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UTISM PECTRUM EWS TM A YOUR TRUSTED SOURCE OFS INFORMATION, EDUCATION, ADVOCACY, NAND RESOURCES FALL 2008 FROM THE LOCAL, STATE, AND NATIONAL NEWS SCENE VOL. 1 NO. 1

The Promise of Research The National Strategic Plan for Spectrum Disorders

By Thomas R. Insel, MD, Director research, and plan for scientific initiatives million (http://www.nimh.nih.gov/ National Institute of that can be supported by either federal research-funding/scientific-meetings/ National Institutes of Health agencies, private foundations, or public- recurring-meetings/iacc/nih-initiatives/fy- private partnerships. 2007-nih-asd-research-portfolio-summary The mission of the IACC Strategic -by-research-area.shtml). When combined he of Plan is to “focus, coordinate, and acceler- with CDC, Department of Defense, Au- 2006 mandated the reestablish- ate high quality research and scientific tism Speaks, and the Simons Foundation ment of the Interagency Autism discovery in partnership with stakeholders commitments, 2007 ASD-related research Coordinating Committee (IACC) to answer the urgent questions and needs funding exceeded $188 million. How are Tto coordinate all efforts concerning Au- of individuals on the and these funds distributed by research area? tism Spectrum Disorder (ASD) across the their families.” Toward this end the IACC While not every project fits into a single Department of Health and Human Ser- received over 500 responses to a public category, approximately 28% was dedi- vices (DHHS). IACC membership in- request for information (RFI) published in cated to investigations of risk factors, cludes an individual with an ASD, repre- December, 2007. In January, 2008 over 27% to biology, 17% to diagnosis, 14% to sentatives from several advocacy groups 60 scientists, clinicians, and advocates treatment, and 14% to other areas such as (, Autism Society of Amer- participated in scientific workshops to training and infrastructure. By matching ica, SafeMinds), and officials from most identify research opportunities within the research support across these various ar- of the federal agencies that deal with au- areas of: risk factors, biology, diagnosis, eas and across funding sources to the re- tism research or services (including Cen- and treatment. Recently, the IACC held search needs highlighted in the strategic ters for Disease Control and Prevention, the first of a series of town hall meetings plan, the IACC will identify opportunities the Department of Education, the Centers to gather additional public input. for new investments as well as for lever- for Medicare and Medicaid Services, the An important part of the strategic plan- aging current support. Office on Disability, Substance Abuse Thomas R. Insel, MD ning effort has been the first comprehen- What specific research initiatives will be and Mental Health Services Administra- for ASD research that will be updated sive analysis of autism funding from both recommended by the Strategic Plan? The tion, and five Institutes of the National yearly. The Strategic Plan for ASD re- public and private sources. The NIH offi- various ideas gathered from the response Institutes of Health). One of the first tasks search is an opportunity to take stock of cial funding commitment for ASD-related of the IACC is to develop a strategic plan recent progress, identify needs for new research in 2007 was approximately $127 see Strategic Plan on page 50 OMRDD Announces Statewide Autism Platform Initiative Includes Research Consortium and Interagency Task Force

Staff Writer OMRDD has re-examined its current ses and unique needs, the Platform re- Autism Spectrum News supports and services, its ongoing initia- sponds to the growing number of indi- tives and its internal structure to align viduals and families faced with the par- every part of its system and its workforce ticular challenges of Autism or an Autism hen Diana Jones Ritter took with this singular mission and these spe- Spectrum Disorder. The Platform is com- office last spring and be- cific outcomes. Within this new reorgani- prised of a collection of activities, some came the Commissioner of zation, the agency has launched numerous new and some well underway, that will W the New York State Office initiatives that respond to the needs of affect the services OMRDD provides to of Mental Retardation and Developmental New Yorkers living with developmental individuals and families living with ASD. Disabilities (OMRDD), she adopted the disabilities with more individualized ser- In keeping with OMRDD’s inclusive mis- agency motto, “Putting People First.” vice, personal choice, community-based sion, the Autism Platform is built largely Ever since, Ritter and her leadership services, fiscal accountability and effi- – though not entirely – on initiatives that team have worked hard to integrate the ciency. In each initiative for improve- serve individuals who need services, not slogan throughout the agency and its pro- ment, OMRDD is committed to two prin- merely individuals with a diagnosis of grams of services and supports. This year, ciples: providing services to individuals, Autism or ASD. It responds with a com- OMRDD is celebrating 30 years of ser- that is, to people who are not alike, but prehensive “platform” of initiatives em- vice, and the new motto speaks of Ritter’s who are unique in their need for ser- bodied in five major areas: goal: to help the world see people with vices and their choices, and responding • Increasing research; developmental disabilities as people first, to the needs of individuals with devel- instead of just a disability. Under her opmental disabilities of all kinds and • Translating research results into im- guidance, the agency’s new mission is to their families. proved treatment options;

help individuals with developmental dis- • Uniting public, private, and nonprofit abilities lead richer lives. Diana Jones Ritter OMRDD Autism Platform Initiative interests to establish statewide research, For OMRDD, this translates into giv- evaluation and treatment capacity; ing people with developmental disabilities within their community; opportunities to OMRDD’s newly developed Autism as much individual control and choice work and engage in activities that allow Platform does just that. Within a service • Networking across State Government over their own lives as possible, the them to contribute to their communities; system that exists on behalf of more than chance to live in a home of their choosing meaningful relationships; and good health. 125,000 individuals with different diagno- see OMRDD Platform on page 49

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The Autism Spectrum News The Mental Health News Education, Inc. Editorial Board Board of Directors

Joel Bregman, MD, Medical Director Chairman

Fay J. Lindner Center for Autism and Developmental Disorders Peter C. Campanelli, PsyD, President & CEO North Shore - Long Island Jewish Health System Institute for Community Living

Cindy Alterson, PhD, BCBA, Principal and Program Director Vice-Chairman Devereux Millwood Learning Center Janet Z. Segal, LCSW, Executive Vice President Four Winds Hospital Steve Freeman, Associate Executive Director YAI National Institute for People with Disabilities Secretary

Lynda Geller, PhD, Clinical Director of the Asperger Institute Peg Moran, LMSW, Senior Vice President NYU Child Study Center F●E●G●S Health and Human Services System

Treasurer Eric Hollander, MD, Director Seaver and New York Autism Center of Excellence Peter Beitchman, DSW, Executive Director Mount Sinai School of Medicine The Bridge

Members of The Board Ami Klin, PhD, Director, Autism Program Carmen Collado, LCSW, Director of Immigrant and Latino Services Jewish Board of Family & Children’s Services Harold S. Koplewicz, MD, Founder and Director NYU Child Study Center Donald M. Fitch, MS., Executive Director The Center For Career Freedom Cecelia M. McCarton, MD, Founder and CEO The McCarton Foundation Michael B. Friedman, LMSW Public Policy Consultant

Judith R. Omidvaran Mary Hanrahan, LCSW, Government Relations Specialist Parent Advocate, New York New York Presbyterian Hospital

Theresa Pirraglia, Co-Founder and Board Member Amy Kohn, DSW, Executive Director & CEO The Foundation for Educating Children with Autism Mental Health Association of Westchester

John C. Pomeroy, MD, Founding Director Leo Leiderman, PsyD, Director, Latino Treatment Services Saint Vincent Catholic Medical Center Cody Center for Autism and Developmental Disabilities Stony Brook University Medical Center Barry B. Perlman, MD, Director of Saint Joseph’s Hospital Pat Schissel, LMSW, President and High Functioning Autism Association Giselle Stolper, EdM, Executive Director Mental Health Association of New York City Alison Tepper Singer, Executive Vice President Autism Speaks Alan Trager, Executive Director & CEO Westchester Jewish Community Services

Douglas K. Stern, Esq. Jonas Waizer, PhD, Chief Operating Officer Abrams, Fensterman, Fensterman, F●E●G●S Health and Human Services System Eisman, Greenberg, Formato & Einiger, LLP Carolyn Reinach Wolf, Esq. Richard Swierat, Executive Director Abrams, Fensterman, Fensterman, Eisman, Greenberg, Formato & Einiger Westchester ARC Executive Staff

Fred Volkmar, MD, Director Ira H. Minot, LMSW, Founder & Executive Director Yale Child Study Center Mental Health News Education, Inc.

Carey Zuckerman, President David H. Minot, BA, Associate Director Autism Society of America, Manhattan Chapter Mental Health News Education, Inc.

Autism Spectrum News TM

Is a publication of Mental Health News Education, Inc, a nonprofit organization.

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Copyright © 2008 Mental Health News Education, Inc. All rights reserved. AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 3

Autism Spectrum News - Table of Contents

The Publisher’s Desk 25 Passion for Football Brings a Boy Out of His Shell

5 The New Voice of the Autism Community 26 Introducing the Editorial Board of Autism Spectrum News

29 Autism and Inclusion in the Classroom Autism Spectrum News Desk 29 Autism Speaks Reaches Out To Latino Community 6 The M.I.N.D. Institute Attacks Autism on All Fronts 30 The Needs and Challenges Facing the Autism Community 6 Cold Spring Harbor Laboratory Model for Autism 32 Statewide Autism Initiative Evolves From Regional Center 7 Researchers Present Findings at IMFAR Conference 33 AHA Provides Essential Services to Autism Community 7 NARSAD Researchers Study Neurotransmitter

34 Putnam County ARC Launches Autism Website Our Cover Story: The Promise of Research 35 F●E●G●S and Seaver Center: A Partnership in Excellence 1 National Strategic Plan for Autism Spectrum Disorders 35 Filling the Gaps: Developing Programs for the Lifespan 1 OMRDD Announces Statewide Autism Platform 36 Addressing the Needs and Challenges of Latino Children

9 Autism Speaks Funds Over $30 Million in Research 37 Adulthood: It’s Closer Than You Think

11 The Seaver and New York Autism Center of Excellence 37 Westchester Convenes Autism Advisory Committee

13 Meeting the Medical Needs of People with ASD 38 Teaching Social Skills Through

13 Early Detection Makes a Lifetime of Difference 39 Dimensions of Quality: Best For Educating ASD Students

15 Social Skills Groups: What Does the Research Tell Us? 17 Evidence-Based Practices for Educating Children Autism Spectrum News 17 What to Consider When Evaluating School Programs Upcoming Theme and Deadline Calendar

19 Identifying Émigré Children with Special Needs Winter 2009 Issue: “Understanding and Treating Autism Spectrum Disorders” 21 Vital Services Available at Long Island Psychiatric Deadline: September 15, 2008

21 Matching Best Practice to Children’s Needs Spring 2009 Issue: “Helping Parents and Family Members Cope with ASD’s” 23 The Path Forward: Brain Stimulation in Autism Deadline: December 15, 2008

23 Autism Research at Columbia University Medical Center Summer 2009 Issue: “Education for Children & Adults with Autism Spectrum Disorders” Deadline: March 15, 2009 24 Genetic Abnormalities in Older Fathers Fall 2009 Issue: 24 Cody Center at Stony Brook University Medical Center “Addressing the Needs of Adults on The Spectrum” Deadline: June 15, 2009 25 Dr. Thomas Insel Speaks with Autism Spectrum News PAGE 4 AUTISM SPECTRUM NEWS ~ FALL 2008

Help Support our Nonprofit Mission Autism Spectrum News Become an Honored Sponsor of Thanks Our Honored Sponsors Mental Health News Education, Inc.

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F●E●G●S Health and Human Social Skill Builder Services System To Become an Honored Sponsor Please Contact The JCC in Manhattan Ira H. Minot, LMSW, Executive Director Foundation for Educating Mental Health News Education, Inc. Children with Autism Westchester Jewish Community Services 16 Cascade Drive, Effort, 18330 Interactive Autism Network Wiley Publishing E-mail: [email protected] Phone: (570) 629-5960

AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 5 From The Publisher

You Are Not Alone: Autism Spectrum News - The New Voice of the Autism Community

By Ira Minot, LMSW My son David went on to graduate The Challenges Ahead Founder and Executive Director Ithaca College with honors in Education Mental Health News Education, Inc. and Music. He has recently come to work We hope that the autism community with me as my Associate Director, and will welcome Autism Spectrum News as a brings with him his firsthand experience vital new resource and as an essential elcome to our first issue of of how a loved one’s illness can disrupt educational tool. As a nonprofit organiza- Autism Spectrum News. We and complicate a young person’s world. tion we will be distributing thousands of want to thank everyone He understands the need for community free copies of each issue to many organi- W who helped us bring this education and shares my desire to combat zations in the northeast. As advertising issue to the community, a vision that be- the destructive effects of stigma, cham- sponsors, these organizations help us de- gan two years ago when we were inspired pion the cause for increased funding for liver Autism Spectrum News to you. In by a parent of a young adult on the spec- cutting edge research, and to help others addition, we will put each entire quarterly trum. Because of her, we devoted an issue find hope in knowing that they are not issue of Autism Spectrum News on our of Mental Health News to Understanding alone in their struggle with mental health website: www.mhnews-autism.org. For and Treating Autism Spectrum Disorders. and autism spectrum disorders. those readers who want us to mail them Following its release, we heard from their own personal copy, we offer afford- many readers who suggested we bring our Our Philosophy able individual and group subscriptions— award-winning format to a new publica- see page 55 for details. tion devoted entirely to the autism com- Since it began, Mental Health News As a nonprofit organization, our chal- munity. We listened, and the seeds to de- has embraced a philosophy that provides lenge is to be as effective as we can in velop Autism Spectrum News began to the community with a trusted and bal- providing you with a trusted source of take shape. Over the next two years we anced source of information. During this news, information, and education about went out into the community and met Ira Minot, LMSW time, the delivery of mental health treat- autism spectrum disorders and to continu- more inspirational parents and leaders of ment and services has shifted to a more ally expand our geographic reach. The many wonderful organizations that are “evidence-based” scientific framework, only funding we receive comes from our making a difference in the lives of people Little did I know that 20 years later I designed to bring the best clinical treat- low-cost advertising, an occasional grant, with autism spectrum disorders. Thanks to would be a patient at that very same hos- ment practices to recipients of services. and our new honorary sponsorship pro- their help we have found a new voice for pital, fighting to save myself from being As a survivor of mental illness, I have gram. Our challenge will be to find the bringing you a new and trusted source of institutionalized in a state psychiatric hos- also followed, supported, and reported on financial resources needed for us to con- news, information, education, research, pital. I was in my late 30’s with a career, the growing consumer recovery move- tinue publishing and to guarantee a secure advocacy and resources about the promis- family, and a five year old son named ment—now highly regarded as playing an future for Autism Spectrum News. ing and ever changing world of autism David. My mother had just lost a difficult important role in the recovery process of This premier issue is but a sample of spectrum disorders. battle with cancer, a loss which affected people with mental illness. what we can accomplish. We want you to me deeply. Soon after, I began to develop The topic of “alternative therapies” is feel that Autism Spectrum News is your Gaining Your Trust symptoms of severe anxiety and depres- not new to us. Our approach has been to newspaper—a publication by the commu- sion. These early symptoms were a warn- focus on those that have been proven ef- nity, for the community. Your participa- I would like to share my own personal ing sign of what was to become a 10-year fective, such as art and music therapy and tion, feedback and support will enable us journey with you, and why I believe it life and death plunge into the darkest anxiety reducing relaxation techniques, to make Autism Spectrum News a publica- explains my sincerity and obligation to depths of despair. I had developed a se- which have found widespread acceptance tion the autism community can be proud bring Autism Spectrum News to the com- vere form of unresponsive clinical depres- as supplemental practices in the treatment of. We are calling on all parents, families, munity. As many of our readers are par- sion. Over the course of my illness, eve- of mental illness. To decide what philoso- adults on the spectrum, treatment profes- ents struggling with children on the spec- rything I had worked so hard to accom- phy we would adopt on alternative thera- sionals, legislators, advocates, members trum, gaining your trust is of the utmost plish in my life was destroyed. My son pies in Autism Spectrum News, we spoke of the scientific community, teachers and importance to me and what our organiza- David grew up in the shadow of my ill- with many people. The more parents and members of the educational community, tion is all about. ness and was profoundly affected by it. leaders of the autism community we and all organizations that provide pro- First let me state that I am not the par- This compounded my shame and feelings spoke with, the more we realized how grams and services to the autism commu- ent of a child on the spectrum, nor am I an of hopelessness and failure. I had to be many different types of alternative treat- nity to help us accomplish this. expert on ASD’s. However, I am a survi- brought to the emergency room on a ment approaches there were, and how Recently, we began hearing from par- vor of a devastating illness that has pro- stretcher on several occasions after trying confused and desperate parents are in ents that Autism Spectrum News would vided me with a unique perspective into to end my life. In and out of hospitals and finding trusted and safe therapies for their provide an excellent resource for teachers what must be a life-changing, overwhelm- programs over the 10 years, my last inpa- children. We wanted to distinguish our- and administrators at public and private ing, and incredibly challenging struggle tient stay was at the very hospital where I selves from the many hundreds of internet schools, working to meet the special edu- that parents with children on the spectrum first worked. Homeless, destitute and still sites that may be offering false hope to cation needs of children on the spectrum. face each and every day. Let me begin by very ill, my doctors gave me one last parents by promoting alternative therapies We agree, and encourage teachers and telling you why we stated our first publi- chance before sending me to a state hospi- that have not been proven by sound scien- school administrators to contact us about cation, Mental Health News. tal. I agreed and underwent Electrocon- tific research. Autism Spectrum News will our group subscription discounts. I grew up in a small town in the north- vulsive Therapy (ECT). Thankfully for stand apart from these groups by focusing We would also like to publish stories ern suburbs of New York City. As a me it was the treatment that finally broke on evidence-based treatments and prac- written by parents and by adults on the youngster my life was full of happiness, the chains of my relentless illness. Over tices that have been studied in clinical spectrum. Having personal accounts of youthful energy and wonder. I enjoyed the next few years, I struggled to rebuild trials by members of the scientific com- your experiences would be an education school and entered college in 1969, where my life and dedicated myself to helping munity. We hope that by doing so, we and inspiration to others. I took a great interest in the study of psy- others who struggled with mental illness will provide our readers with a safe and We look forward to hearing from you. chology. I thought about pursuing a career as I had. I went out into the community trusted source of news and information. Please e-mail us at [email protected] helping people with mental illness. My and met many of the dedicated leaders of In keeping with this philosophy, we and tell us what issues are important to first job following graduation was caring the mental health community to enlist will work with some of the autism com- you, so that we can address them in future for patients at a prominent psychiatric their help in starting a local newsletter munity’s leading minds in the areas of issues of Autism Spectrum News. hospital located near my hometown. It called Mental Health News. Today, these science, treatment, education and advo- was an experience of a lifetime and con- leaders are our Board of Directors and cacy. They have volunteered to serve on You Are Not Alone firmed my desire to further my studies by Mental Health News is an award-winning our Editorial Board, and we are deeply Autism Spectrum News Cares About You earning a Masters degree in Social Work quarterly publication with a readership of grateful for their participation. We intro- at New York University. over 160,000 from coast to coast. duce you to them beginning on page 26. Have a Wonderful Fall Season. PAGE 6 AUTISM SPECTRUM NEWS ~ FALL 2008

AUTISM SPECTRUM NEWS DESK

The M.I.N.D. Institute Attacks Autism on All Fronts

Staff Writer dren’s Center for Environmental Health enrolled in the Triumph Center for Early Autism Spectrum News and Disease Prevention. Pessah is the Childhood Education, fulfilling a shared author of a study connecting the mercury- dream of , educators and based preservative thimerosal with disrup- community activists to provide an innova- hen Leo Kanner described tions in antigen-presenting cells known as tive and affordable preschool for both typi- his patients with rare and dendritic cells obtained from mice. The cally developing children and children with “fascinating peculiarities” in study provides the first evidence that den- special needs in Sacramento's socio- W his seminal 1943 work, tritic cells show unprecedented sensitivity to economically depressed Oak Park neighbor- “Autistic Disturbances of Affective Con- thimerosal, resulting in fundamental hood. This partnership will allow the tact,” he could never have imagined that one changes in the immune system’s ability to M.I.N.D. Institute to bring intervention day one in 150 children would carry the respond to external factors. strategies to the youngest students, estab- diagnosis whose name he coined: autism. Our knowledge of the subtle behavioral lishing a model early education program Nor could Kanner have imagined the vast markers of autism has grown because of that can be used in other school districts arsenal of weapons that researchers would work, led by M.I.N.D. Institute researcher throughout the state and nation. marshal to search for treatments and cures. Sally Ozonoff, and has allowed us to iden- The M.I.N.D. Institute has received At the UC Davis M.I.N.D. Institute tify children with the condition, sometimes funding to expand these efforts even fur- (Medical Investigation of Neurodevelop- as young as 12 months old. While we don’t ther with the receipt of a grant from the mental Disorders), attacking autism on all have any fully effective treatments for chil- U.S. Department of Health and Human fronts already has yielded that there are sev- dren with autism, behavioral and educa- Services to establish a new University eral different “autisms,” all labeled with one tional interventions, treating associated Center for Excellence in Developmental single diagnosis. The M.I.N.D. Institute is medical problems and some medications Disabilities, Education, Research and Ser- developing the largest and most comprehen- Robert Hendren, DO can make significant differences in the lives vice. Led by M.I.N.D. Institute Education sive biomedical assessment of children with of children and adults with autism. Director Robin Hansen, the grant will in- autism that has been attempting to parse out Research by neuroimmunologist Judy Another promising line of research is crease access for both patients and health- the characteristics of autism’s phenotypes. Van de Water has found that antibodies in grounded in the theory that some forms of care providers to interdisciplinary training Led by M.I.N.D. Institute Research Di- the blood of mothers of children with au- autism result from the body’s inability to resources and support clinical research that rector , the Autism Phenotype tism bind to fetal brain cells, potentially handle environmental stressors. M.I.N.D. enhances assessment and treatment options Project is a longitudinal study of 1,800 chil- interrupting healthy brain development. Institute Executive Director Dr. Robert for children and adults with developmental dren from multiple sites across the United Van de Water’s study also found that the Hendren has begun treating patients with disabilities. The new center will serve as a States that aims to distinguish among differ- reaction was most common in mothers of methyl B12 which is believed to help the regional, state and national resource for ent subgroups of autism that might correlate, children with the regressive form of au- body handle toxins and oxidative stress in community services and technical assis- for example, with or au- tism, which occurs when a period of typi- the environment. Oxidative stress results in tance to improve the capacity of systems of tism with particular medical symptoms. cal development is followed by loss of the production of peroxides and free radi- care to meet the needs of individuals with Over 52 scientists from eight research areas social and/or language skills. The finding cals that are toxic to cells, damaging DNA developmental disabilities. are taking part in the Autism Phenome Pro- raises the possibility that the transfer of and other cellular components. A prelimi- There is one other partnership that must ject, using a variety of tools to yield new maternal antibodies during pregnancy is a nary study at Arkansas Children’s Hospital be acknowledged. The M.I.N.D. Institute insights into the genesis of autism, including risk factor for autism and, at some point, has shown that MB12 supplementation came into being through the tireless efforts medical examinations, analysis of environ- that a prenatal test and treatment could reduced markers of oxidative stress in the of the families of children with autism. It is mental exposures, evaluation of behavior prevent the disorder in some children. blood of children with autism. the urgency of their needs for effective and neuropsychology, genomics, brain The interplay between genes and spe- Community partnerships are allowing treatments, preventions and cures that con- structure, brain function and immune func- cific toxins and the roles they may plan in M.I.N.D. Institute clinical and translational tinues to inspire the M.I.N.D. Institute’s tion. These varied areas of inquiry have the onset and severity of autism is the researchers to share these insights. In Sep- research initiatives and forms the basis for started to yield important results. work of Isaac Pessah, director of the Chil- tember 2007, 60 children aged 3 and 4 years its many advances.

Cold Spring Harbor Laboratory Model for Autism Suggests Women Carry the Disorder and Explains Age as a Risk Factor

Staff Writer tion – but do not exhibit severe symptoms The model proposes two prominent know about spontaneous mutations and Autism Spectrum News of the disorder – have a 50% chance of pass- risk classes for families affected by au- autism offers an alternative to traditional ing the mutation on to their children. Sons tism. Low risk families give rise to spo- thinking about genetic disorders as purely often show the most severe symptoms. radic autism, the more common form, by heritable from a parent. This has implica- new model for understanding Spontaneous mutations are changes in a spontaneous germ-line mutation. The chil- tions for other disorders such as morbid how autism is acquired has chromosome that alter genes. Germ-line dren, mostly female, who receive such a obesity, schizophrenia, and congenital been developed by a team of mutations are newly acquired in a germ cell mutation, but do not display the disorder, heart disease.” A researchers led by Cold Spring of a parent, and sometimes are transmitted are the source of the high risk families. Harbor Laboratory (CSHL) and Albert to offspring at conception. Men and women The data shows that the transmission pat- The research was funded by the Einstein College of Medicine. Autism is a are equally as likely to acquire a spontane- tern to boys in high risk families is often Simons Foundation and utilized databases developmental disorder, characterized by ous mutation that can cause autism, but au- of a dominant pattern that may account from the Autistic Resource Exchange language impairments, social deficits, and tism is three times more likely in men, mak- for a quarter of autism. Although the data (AGRE) Consortium, the University of repetitive behaviors. The researchers ana- ing women the more likely carriers of new does not answer whether there is a grada- Michigan, and the Interactive Autism Net- lyzed data on autism incidence and found mutations. “The fact that germ-line muta- tion of lower risk, the model builds on work (IAN). IAN is an on-line national a previously unrecognized pattern. The tions increase with age places older parents recent CSHL findings that spontaneous autism registry and database launched in pattern can be explained by assuming that at a higher risk of having children with au- mutation is frequent in sporadic autism April by the Kennedy Krieger Institute. spontaneous germ-line mutation is a sig- tism, explaining a pattern that has been re- and less frequent in children from high Families impacted by an Autism Spectrum nificant cause of the disorder. Parents, cently observed,” said CSHL co-author of risk families. Disorder can contact IAN at especially women, who acquire the muta- the study Michael Wigler, Ph.D. Wigler suggests that “what we now www.ianproject.org. AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 7

AUTISM SPECTRUM NEWS DESK

Researchers Present Findings at IMFAR Conference

Staff Writer mental outcome, and spoke of the promise Autism Spectrum News of currently ongoing studies that prospec- tively examine mothers and children in order to assess risk factors and match he seventh annual International them with their ultimate outcome. Meeting for Autism Research Tony Persico, M.D. from the Univer- (IMFAR) recently concluded in sity Biomedico in Rome highlighted the London with over 1,150 re- importance of a strong pathophysiological Tsearchers from around the world attending foundation to environmental research by and making over 850 presentations. discussing how researchers must link par- Among the countries represented were ticular environmental exposures to the Australia, Bangladesh, Brazil, Canada, specific disruptions in biological func- China, Denmark, Finland, France, Greece, tions that they cause. He presented data Iceland, India, Ireland, Israel, Mexico, from his own lab which examined function Norway, Portugal, Saudi Arabia, South of the mitochondrial aspartate/glutamate Africa, South Korea, Spain, Sweden, Tai- transporter in brain tissue from individu- wan, Uganda, United Kingdom, United als affected with autism and also dis- States, Venezuela and Vietnam. cussed newly published research that The following are brief summaries of pointed to a set of genes that affect im- some of the IMFAR presentations in the mune function which he found may be areas of autism etiology, biology, diagno- dysregulated in autism. He concluded that sis and treatment. The record number of environmental exposures may not be nec- attendees and the depth and breadth of the essary or sufficient in themselves for de- science presented signals that autism re- additional environmental factors to ulti- factors as method of birth induction, ultra- velopment of autism, but hypothesized search is truly becoming global, with ad- mately cause autism. The IMFAR hosted sound frequency, as well as chemical ex- that they may contribute to the apparent vances being made across the board. But an educational symposium concerning posures found in the home. abrupt onset of symptoms in a subset of most importantly, the goal of the confer- links between the environment and au- Irva Hertz-Picciotto, Ph.D., lead inves- individuals. These groups need to be ence was to help individuals and families tism. These presentations, led by Craig tigator of the CHARGE study at UC much more carefully studied. who are living with autism by uncovering Newschaffer, Ph.D., were intended to Davis, provided an overview of epidemi- In two final talks, Brenda Eskenazi, more effective means to diagnose, treat educate the community on ongoing re- ologic designs to study environmental Ph.D. from Berkeley University and Eric and determine the . search and current thinking in environ- factors in neurodevelopmental disorders. Roberts, M.D. from the Depart- mental health science, genetics and epide- She focused on epidemiologic ap- ment of Health each presented different Etiology miology that is relevant to the investiga- proaches, outlining different study designs approaches to studying risk factors from tion of environmental risk factors in au- that each pose a different challenge. She an epidemiological perspective. Dr. Eske- Environmental Science: Several pres- tism. This symposium also served to com- also stressed the importance of connecting nazi is the lead investigator on an NIEHS/ entations focused on the role of the envi- plement other presentations on environ- epidemiology to neuropathology and neu- EPA longitudinal birth cohort study called ronment as a risk factor for autism. Ge- mental exposures that are being examined rotoxicology. Her talk emphasized that netic risk factors may be acted upon by for links to autism, which include such timing of exposure is critical to develop- see IMFAR Conference on page 52

NARSAD Researchers Study Neurotransmitter Overactive Transporters of Serotonin and Sticky Blood Protein Yield Clues to Autism

Staff Writer Serotonin has long been suspected to bilt Center for Molecular Neuroscience at cal relationship between the two proteins, Autism Spectrum News play a role in autism via elevated blood Vanderbilt University Medical Center. they investigated whether the interaction serotonin levels and genetic variations in “This took us to platelets.” can change SERT activity. They found SERT. Alterations in brain serotonin have Platelets are the sticky cells that com- that cells lacking integrin beta3 took up any children with autism have also been associated with anxiety, depres- bine to form blood clots. In platelets, less serotonin and that integrin beta3 acti- elevated blood levels of sero- sion and alcoholism. Antidepressants that SERTs accumulate serotonin that is pro- vation or a human integrin beta3 mutation tonin, a neurotransmitter cen- block SERT, known as SSRIs, or selec- duced in the gut. Administration of SSRIs greatly enhances serotonin uptake. tral in brain processes that tive serotonin reuptake inhibitors, block or genetic suppression of the SERT pro- “We found that integrin beta3 can put regulatesM mood and anxiety. New research the molecule’s ability to sweep synapses tein in animals has been observed to pre- the serotonin transporter into high gear,” led by a NARSAD investigator suggests that clean of serotonin. vent serotonin uptake in platelets. “Prior said Dr. Blakely. Notably, Scientific this condition, called “hyperserotonemia,” research had fingered the integrin beta3 Council member Edwin Cook, M.D., at may play a role in the origins of certain Looking for Serotonin in Platelets gene as a determinant of blood serotonin the University of Illinois at Chicago and a autism-associated deficits. levels and, independently, as a risk factor co-author on the study, had previously In an article appearing in the March Working in the lab of NARSAD Scien- for autism,” Dr. Blakely said. shown that the same integrin beta3 muta- issue of the Journal of Clinical Investi- tific Council member Randy Blakely, Ph.D., tion that elevates SERT activity also pre- gation, Ana Carneiro, Ph.D., a 2007 Dr. Carneiro was searching for proteins that Integrin Beta3 Activation Enhances dicts elevated blood serotonin. NARSAD Young Investigator, and col- interact with SERT and might contribute to Serotonin Uptake “Most investigators studying this integrin leagues at Vanderbilt University Medi- disorders where serotonin signaling is al- beta3 mutation have focused on how its cal Center, report that a well-known tered. “Levels of SERT in the brain are actu- In the new study, Dr. Carneiro identi- high activity state changes platelet clotting protein found in blood platelets called ally quite low, so we decided to see what fied a large set of proteins that “stick” to and never looked at its impact on serotonin integrin beta3 physically associates with progress we could make with peripheral SERT, hypothesizing that they might con- levels or SERT function,” explained Dr. and regulates a protein called the sero- cells that have much higher quantities,” said trol SERT activity. One of these turned Carneiro. “Now they have a reason to.” tonin transporter, or SERT, which con- Dr. Blakely, the Allan D. Bass Professor of out to be integrin beta3. Once Drs. trols serotonin availability. Pharmacology and director of the Vander- Carneiro and Blakely confirmed a physi- see NARSAD on page 48 PAGE 8 AUTISM SPECTRUM NEWS ~ FALL 2008 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 9 Autism Speaks Funds Over $30 Million in Research

Staff Writer available to scientists worldwide. In 2007, Autism Spectrum News an $8.4 million grant from the NIH was awarded to the University of Southern California to establish a Center for Ge- t was a momentous year for autism nomic and Phenomic Studies of Autism. research. In 2007, Autism Speaks Over the next five years, 50 percent of funded over $30 million in research, those funds will be allocated to directly almost double that of last year. With support the ongoing data collection ef- anticipatedI annual budget increases of 15 forts of the AGRE program to survey to 25 percent over the next few years, we the genetic, physical, and behavioral took the opportunity to clarify and define profiles of children with autism. The our research priorities into four distinct NIH funding will double the number of areas: etiology (or risk factors), biology, families in the AGRE database diagnosis and treatment. (currently at 1700) and expand the data beyond genetic and clinical profiles to What We Fund include phenomics, the systematic study of the outward physical and behavioral Grants and Fellowships: Autism characteristics of autism. Speaks funds several types of investigator ATN - Autism Treatment Network: The -initiated grants targeting critical areas of ATN is the nation’s first network of hos- autism research. These grants are crucial pitals and physicians working together to for allowing investigators to gain enough establish standards of clinical care based data to be able to attract even larger, multi on research and shared clinical practice -year commitments from the NIH and for autism and related disorders. At the other traditional medical research funding doctoral awards offered to encourage and Brain Development Initiative: This end of 2007, Autism Speaks’ Board of organizations. Fellowships provide the support the training of young scientists initiative takes its impetus from a conflu- Directors approved the expansion of the necessary resources to support and en- interested in a career in autism research. ence of findings on abnormal brain devel- ATN from five to 15 sites nationwide courage the development of young scien- In 2007, 31 mentor-based fellowships opment in autism. This initiative focuses (sidebar), reaffirming Autism Speaks’ tists who benefit from the mentorship of were awarded, totaling $2.6 million. on bridging research disciplines – brain commitment to evidence-based treatment prominent researchers. Physician/Investigator Beginning Au- structure, function, chemistry, and genet- for autism. tism Research (PIBAR) Fellowships: ics—to fund innovative work in under- ATP - Autism Tissue Program: The Our Research Grants These fellowships support medical doctors standing why brain development goes ATP is the only privately funded program who wish to spend a year devoted to autism awry. In 2007, the Brain Development dedicated to increasing and enhancing the Augmentation and Opportunity Bridge research. In 2007, Autism Speaks awarded Initiative funded the second year of the availability of post-mortem brain tissue Awards: In light of a tight federal research $1.4 million to five such fellowships. Neuropathology Workgroup, a collabora- for basic research in autism. In 2007, the budget, these awards are designed to sup- tive effort to understand the cellular and ATP received support from the NIH for plement or expand the scope of autism Autism Speaks – Organized Initiatives molecular changes in the developing au- its awareness and recruitment efforts, and related research projects already funded tism brain. hopes to secure additional public and pri- through the NIH, CDC, or other federal As important as individual grants, ini- Gene-Environment Interaction Ini- vate funding for 2008. agencies. In 2007, a total of 4 projects tiative projects give Autism Speaks a tiative: This interdisciplinary effort be- IAN - Interactive Autism Network: were allocated approximately $450,000. much more proactive role in promoting gan in 2007 and brings together experts IAN, a partnership between the Ken- Basic and Clinical Research Grants: specific research. Initiatives frequently in the fields of genetics and environ- nedy Krieger Institute and Autism These awards provide enhanced funding to involve formation of collaborative re- mental health to capitalize on the latest Speaks, is an innovative web-based pro- researchers with existing preliminary data search consortia, support of targeted re- findings in autism genetic and environ- ject designed to accelerate the pace of from pilot studies. In 2007 Autism Speaks search, organization of research meetings, mental sciences. autism research by linking researchers awarded $11.5 million to 27 projects. and creation of research resources. We High-Risk Baby Siblings Consortium with families. In addition, families of Innovative Technology for Autism believe initiatives that bring together re- and Toddler Treatment Network: The children with an ASD can share infor- Grants: This grant mechanism spurs de- searchers from varied fields will promote Consortium’s goal is to bring together the mation in a secure online setting and velopment of new technology to assist a collaborative approach to help solve the major research groups in the field become part of the nation’s largest online those living with autism. In 2007, five new mysteries of this complex disorder as (including the National Institutes of research effort. Launched in April 2007, grants worth approximately $416,000 were quickly as possible. Health [NIH] and scientists worldwide) to IAN has already registered more than awarded. discover the earliest behavioral and bio- 25,000 people in this program. Treatment Grants: These grants sup- Targeted Initiatives medical markers for ASD and develop CTN - Clinical Trials Network: The port research focused on all aspects of treatments appropriate for infants and CTN is a collaboration of hospitals and treatment, including behavioral, biomedi- Autism Epidemiology Network: Autism toddlers. medical centers working together on cal, and technological interventions. In Speaks and the Centers for Disease Control Innovative Technology for Autism Ini- clinical trials. The CTN approach en- 2007, over $2 million in funding was and Prevention (CDC) are co-sponsoring the tiative: This initiative was established to ables sites to enroll children around the awarded to treatment research. Autism Epidemiology Network in an inter- lead in the development of products that country in a single study, allowing sites Pilot Research Grants: These awards national effort to understand the causes of provide real-world solutions to issues to reach recruitment goals in a much support innovative new approaches, fund- autism, particularly across diverse genetic faced by those with autism, their families, shorter amount of time, thereby acceler- ing an investigator’s beginning explora- and cultural settings. educators, healthcare specialists and re- ating progress. In 2007, the CTN tions in autism research. In 2007, Autism Autism Genome Project (AGP): In searchers. launched a new study in collaboration Speaks committed $1.7 million to support 2007, the AGP moved into phase two, in with specialty pharmaceutical company 15 projects in this category. which the coalition of researchers will Resources and Clinical Programs Neuropharm Group PLC. The trial, apply state-of-the-art “gene-chip” tech- known as SOFIA (study of in Our Research Fellowships nologies to scan the genome for associa- AGRE - Autism Genetic Resource Ex- autism), will include more than 100 tion with newly identified genetic mark- change: The AGRE collection is the larg- children and adolescents with ASDs to Mentor-Based Fellowships: These ers, as well as copy number variables est private single source of genetic and confirm the effectiveness of Neuro- fellowships are pre-doctoral and post- along chromosomes in autism. clinical information for autism research pharm’s custom-designed product.

Autism Speaks is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention and treatments for autism, and to advocating for the needs of individuals with autism and their families. PAGE 10 AUTISM SPECTRUM NEWS ~ FALL 2008 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 11

The Seaver and New York Autism Center of Excellence Dedicated to Research, Treatment, Education, and Improving Care in the Community

By Eric Hollander, MD, Director The Center is also committed to educa- The Center conducts weekly Social Seaver and New York Autism tion and provides training opportunities in Skills Therapy Groups for school-age chil- Center of Excellence, Mount Sinai state of the art assessment, treatment, and dren with ASD. Groups are conducted in School of Medicine research approaches to autism spectrum 12-week modules targeting deficits in in- disorders through funded fellowship pro- terpretation of social/emotional cues, con- grams available to physicians and gradu- versational skills, anxiety-management, he Seaver and New York Autism ate students. and peer interaction/friendship skills. Center of Excellence was launched Groups are conducted utilizing cognitive- in 1993 by a grant to Mount Sinai Clinical Services behavioral models of intervention and in- Medical School of Medicine from clude concurrent parent-training sessions to theT Beatrice and Samuel A. Seaver Foun- Our team consists of clinical/ facilitate skills generalization. dation. The Center is under the direction behavioral psychologists, psychiatrists, of Dr. Eric Hollander, the Esther and Jo- and neurologists with specialized training Research Program seph Klingenstein Professor of Psychia- and expertise in the diagnosis, assessment, try and Chairman of the Department of and treatment of autism spectrum disor- The Seaver Center research program is Psychiatry at Mount Sinai School of ders (ASD). The clinical team has unique a collaborative effort that offers an inte- Medicine. expertise working with children, adoles- grated series of research studies in inno- In 2003, the Seaver Center was named a cents, and adults on the autism spectrum vative treatments, genetics, and brain im- Center of Excellence by the National Insti- who have complex needs and who may be aging. All services in research studies are tute of Health (NIH) as part of the Studies considered difficult to assess and treat. provided without charge to eligible par- to Advance Autism Research and Treat- We offer Assessment & Evaluation ticipants and include gold standard diag- ment (STAART) Centers Program initia- Services, including diagnostic testing, nostic assessments such as the Autism tive. We have also received funding from neuropsychological testing, academic Diagnostic Observation Schedule several Federal sources, including the Na- testing, and psychiatric evaluations. In (ADOS), the Autism Diagnostic Interview tional Institute of Mental Health, the Na- Eric Hollander, MD addition, we offer comprehensive Treat- (ADI), and neuropsychological testing. tional Institute of Neurological Disorders ment Services, including medication man- and Stroke, and the Orphan Products Divi- and to developing breakthrough treat- agement, social skills groups, parent train- The Experimental Therapeutics & sion of the Food and Drug Administration, ments. The Center strives to translate sci- ing sessions, cognitive behavior therapy, Clinical Trials Program conducts treat- in addition to multiple foundations and the entific efforts into optimal community and a sibling support program. As part of ment studies for children and adults that pharmaceutical industry. care and has alliances with numerous sup- our commitment to education and com- target specific symptoms of ASD, includ- port groups and community agencies, as munity care, we also have a Community ing repetitive behaviors, aggression, lan- Our Mission well as affiliations with the YAI National Outreach & Training Program that pro- guage delays, motor skills deficits, and Institute for People with Disabilities, Fed- vides lectures and workshops to parent social impairment. The Center has a long The Seaver and New York Autism eration Employment and Guidance Ser- groups, agencies, and schools. And we and successful history of conducting key Center of Excellence is dedicated to dis- vice (F.E.G.S.), and United Jewish Ap- also host an annual conference to address covering the biological causes of autism peal Federation of New York (UJA). current scientific trends and discoveries. see Seaver Center on page 40 PAGE 12 AUTISM SPECTRUM NEWS ~ FALL 2008 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 13

Good Health For Life Meeting the Medical Needs of People with Autism Spectrum Disorders

By Peter DellaBella, MD, Associate For Devon, now 16, trips to the dentist clude many, but not all, people on the au- Medical Director and Chief of are now easy and, thanks in part to his tism spectrum — “experience poorer health Psychiatry, Premier HealthCare of regular checkups, he has been cavity-free and more difficulty in finding, getting to and The YAI/National Institute for People for years. paying for appropriate health care.” with Disabilities Network In fact, a 2002 study conducted by Overcoming Barriers to Good Health researchers from the Heller School for hen Devon Kennedy was Social Policy and Management at small, a visit to the dentist For many people on the autism spec- Brandeis University found that more than could induce an episode of trum, routine medical checkups and dental a third of children with autism encoun- W panic. Having a cavity visits often have to be administered under tered obstacles in obtaining necessary care filled, while unpleasant for anyone, was general anesthesia and may even result in from medical specialists over a 12-month for him, a nightmare. trips to the emergency room. This often time span. The reason? An inability to But his dentist, Chrystalla Orthodoxou, causes families or caregivers to forgo im- find referrals and providers with appropri- had confidence that Devon, who has an portant preventative checkups and exams. ate training (Krauss, Gulley, Sciegaj & autism spectrum disorder (ASD), could Barriers to accessing care are a major Wells, 2002). come to terms with a dental checkup — issue for this population. For decades, this has been a fact of life even with having a cavity filled. “People with ASDs have the same for many people with ASDs. And while As chief of dentistry at Premier medical needs as anybody else,” said health care services for people with au- HealthCare, a member of the YAI/ Stephen E. Freeman, Associate Executive tism have begun to improve, much needs National Institute for People with Dis- Director of YAI/National Institute for to be accomplished in providing access to abilities Network, Dr. Orthodoxou has the Peter DellaBella, MD People with Disabilities. “But they also services and educating health care profes- training and experience necessary to set have specific health concerns that need to sionals about patients with autism spec- patients like Devon at ease. She spent “The staff at Premier HealthCare take be addressed. They often require more trum disorders. several visits dedicated solely to acclimat- the time to understand each patient’s spe- time and patience to treat than the general ing Devon to the dental chair and instru- cific situation, help them overcome their population, so it can be very difficult to A Model ments and building a trusting relationship fear and successfully complete the necessary find doctors, dentists and mental health for Community-Based Health Care with him. clinical procedures,” Dr. Orthodoxou said. professionals who have the knowledge “For individuals with autism, who may Cathy, Devon’s mother, will never and willingness to work with them.” Premier HealthCare was founded in have more difficulty understanding the forget the day that Devon was able to According to a 2002 report by the U.S. 1997 to serve people with disabilities, importance of health care, anxiety can calmly have a cavity filled, an event that Surgeon General titled “Closing the Gap: whose needs were simply not being met create significant obstacles to physical would have been unthinkable a few months A National Blueprint to Improve the by the traditional health care system. This well-being and overall quality of life,” before. “Dr. Orthodoxou called me later that Health of Persons with Mental Retarda- person-centered, community-based model said David Kaufman, M.D., medical di- day, saying, ‘I knew he could do it! I knew tion,” children, adolescents and adults rector at Premier HealthCare. he could do it!’” she recalls. with intellectual disabilities — which in- see Good Health on page 47

Early Detection Makes a Lifetime of Difference

By Bernadette Flynn, EdD trum, James has experienced a significant When parents call Hilda wondering if Director of the New York League speech delay, which is a prominent indi- their children need evaluations, she tries for Early Learning, a member of the cator for autism. It is also the aspect of the to be as helpful, and as realistic, as possible. YAI/National Institute for People with disability that families often have the “Evaluations, the first step in determin- Disabilities Network most difficulty coming to terms with. ing a child’s diagnosis, are stressful for “One of the he biggest fear for families parents because of the fear that a profes- whose child is more recently diagnosed is: sional will tell them that there is some- t 15 months old, James had not ‘Will my child ever talk?’” said Hilda thing wrong,” Hilda said. “The most diffi- yet begun to speak. His Chusid, Early Intervention Supervisor of cult part comes when they learn that their mother, Michelle Lederman, the LifeStart program at the New York fears have been confirmed. Then they A was not particularly worried, League for Early Learning, a member of have to figure out how they are going to but she decided to do the prudent thing the YAI/National Institute for People with help their child—and how they are going and have him evaluated for a speech delay. Disabilities Network. LifeStart offers to deal with this.” When the speech therapist recom- early intervention services for newborns Unfortunately, parents sometimes ig- mended a second, more comprehensive through age three. “Parents wonder, ‘If nore the signs of autism. They may attrib- evaluation, “I said, ‘Sure, go ahead!’” my child doesn’t have the words to tell ute their children’s lack of speech to being Michelle recalls. “Our speech therapist me he’s in pain, how will I know? If my a “late bloomer.” Or they may try to ra- kept saying it was behavioral, but I really child goes on the school bus and some- tionalize away their children’s develop- wasn’t sure what that meant.” thing happens to her, how will I know?’ ” mental delays when they see typically Months later, James was diagnosed as For families, speech delays may be the developing children of friends or relatives being on the autism spectrum. Autism is a most obvious sign that their children begin to speak later than usual. neurologically based developmental dis- aren’t developing typically. However, Carol Stein-Schulman, Assistant Di- ability that according to the Centers for Bernadette Flynn, EdD parents are also advised to consult a phy- rector of Education and Training for the Disease Control and Prevention affects sician if their child exhibits any of the New York League for Early Learning, one in 150 children in the United States. guideline that all children be screened for following tendencies: explains that parents sometimes miss cru- James was lucky. Because he was di- autism spectrum disorder twice before age cial indicators for autism because their agnosed before the age of 2, he was able two -- once at 18 months and once at 24 • No response to name children appear to be good, easy babies, to begin receiving crucial early interven- months -- as part of well baby checkups. who play in their cribs without fussing. tion services that, for many children, can It also recommends that treatment for • Repetitive and excessive use of words, “Parents need to see whether their chil- change the course of their lives. Accord- autism be started when autism spectrum phrases, mannerisms or gestures dren are understanding language,” Carol ing to the New York State Department of disorder is suspected, rather than when a • said. “You want to make sure that by ap- Health Early Intervention Program, inten- formal diagnosis is made. Little or no eye contact proximately 12 to 18 months of age, they

sive behavioral approaches, when started But a diagnosis of an autism spectrum are interacting with their primary care- • Lack of interest in making friends at an early age, may significantly improve disorder can only occur if parents, care- taker. If all they want to do is sit in the cor- outcomes for children with autism. givers and doctors and other professionals • Lack of spontaneous or make-believe play ner and arrange their cars or play with the In fact, this explains why the American know what to look for. Academy for Pediatrics adopted a new Like most children on the autism spec- • Persistent fixation on parts of objects see Early Detection on page 43 PAGE 14 AUTISM SPECTRUM NEWS ~ FALL 2008 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 15 Social Skills Groups: What Does the Research Tell Us?

By Lynda Geller, PhD and providing opportunities for skill gen- critical area to examine. A meta-analysis Clinical Director, Asperger Institute eralization. Their strongest recommenda- of fifty-five single-subject design studies NYU Child Study Center tion was that we need to develop and vali- was conducted to formulate some gener- date manualized social skills curricula to alizations about treatment effectiveness of be utilized in schools and community- programs as they are currently being de- ocial skills deficits are considered based groups. livered in schools and to specify what to be one of the critical diagnos- Rao, Beidel & Murray reviewed papers approaches seem to offer the best poten- impairments that define au- evaluating social skills training programs tial. Bellini et al. reiterate that there is S tism and Asperger Syndrome, so for youth with Asperger Syndrome or only minimal evidence that social skills it is perhaps not surprising that both high functioning autism to assess their training programs are effective for chil- school personnel and clinicians in the efficacy and make recommendations for dren in general, let alone for those for community frequently recommend that a future research directions. They exam- whom social deficit is the defining attribute. child or adolescent on the autism spec- ined ten studies of high functioning chil- The most important conclusions of this trum should be enrolled in social skills dren on the autism spectrum as such stu- review were that social skills interven- groups. The intention of such groups is to dents are more likely to be in inclusion tions in schools, as they are being re- improve the development of these skills settings where the social demands are ported in the literature, have low to ques- that often are so compromised. Yet just more intense. They found that current tionable treatment and generalization ef- how much research evidence exists sup- research is lacking in the following areas: fects and moderate maintenance effects. porting the effectiveness of social skills establishing a common definition of what That implies that most treatments were groups as they are currently being deliv- comprises social skills; conducting re- not particularly effective in changing so- ered? The goals of this review are to search that includes having control groups cial behavior or affecting any changes that summarize what the research tells us re- to compare outcomes and having blind generalize across settings, but that any garding efficacy of group social skills observers to evaluate results; generalizing changes that occurred were somewhat development models and to suggest to techniques to other settings; and conduct- maintained. The studies were then as- families what they should require from ing long term follow-up to determine if an sessed by approach with the general find- those delivering this kind of service. Lynda Geller, PhD intervention had any effects on eventual ings that interventions need to be more Social skills are critical to successful outcome. They recommended that future intensively implemented, that they should adult outcome, from having rewarding studies utilize manualized treatments spe- occur in context rather than in an office, personal relationships to academic and schools and clinics effective in improving cific to particular social deficits (e.g. sim- that the strategy should match the specific vocational accomplishment to overall essential social skills? ple interaction versus relationship devel- skill deficit, and that validated treatments mental health and quality of life. When Very recently, four significant reviews opment,) that more rigorous research de- should be implemented by clinicians considering these issues for the individual of social skills interventions have been signs be employed to assess effectiveness, trained in the specific intervention to in- with an autism spectrum disorder we must published (White et al., 2007; Rao et al., and that generalization beyond the office sure effectiveness. The findings of this be cognizant of the developmental nature 2008; Matson et al., 2007; Bellini et al., be specifically implemented and meas- analysis were discouraging and implied of these conditions. Individuals on the 2007.) They provide guidelines for assess- ured. As in the previous review, these that much of what is now being done for autism spectrum have underlying brain ing social skills groups as they have been authors noted that the feasibility of im- students with ASDs in schools may be differences that affect how they experi- implemented and give us important stan- proving social development through group rather ineffective. ence the world. In turn, experiences in dards for assessing whether critical qualities instruction has been demonstrated, but the Given the limited research evidence life have direct consequences on ongoing exist in what is being currently offered. specific methods need further research. for the effectiveness of group social skills brain development. So the outcome of White, Keonig & Scahill describe their Matson, Matson & Rivet examined a interventions, what are responsible recom- any child’s development is the sum total concern with social skills development as wide range of social skills interventions mendations? For community-based inter- of underlying assets and deficits and the being based on findings that social skills for children with ASDs of all functioning ventions, parents should ask the following life experiences that continuously shape deficits do not remit but become more levels. In their review of seventy-nine questions: all of us and directly impact brain devel- devastating with age as the social milieu treatment studies, they generated specific opment. That is why early intervention is becomes more complex; that children in recommendations of what is required for • Is there a manualized, evidence-based such a powerful tool. It actually shapes inclusive settings are often more rejected the field to move forward toward more curriculum or a well-designed, ex- brain development during critical periods and isolated, yet are not given the skills to validated and specific social skills treat- plicit program with specific goals? and individual outcome can be profoundly succeed; and that social skills deficits ments. They suggest: affected by having or not having these contribute to academic and occupational • Do the proposed group members kinds of experiences. underachievement and later mood and • Parent training models to improve have similar needs that are being ad- Those of us who work intensively with anxiety problems. Given these outcomes, generalization and to make interven- dressed specifically? children with autism continually witness high quality social skills interventions are tion available for younger children how autism unfolds and how the lack of crucial. Fourteen studies were identified • Do the target behaviors being ad- certain experiences contributes to the ulti- that addressed group intervention for chil- • Programs that address interfering dressed make sense for each member? mate outcome of each one of them. For dren and adolescents identified as having behaviors or co-morbid disorders example, it is not uncommon for parents an autism spectrum disorder (ASD.) All (such as severe anxiety) • Is generalization to real-life settings to tell us that their child has never had a studies had very small sample sizes (ten being designed as an integral part of friend. While this is painful in and of or less.) Only two studies utilized a • Interventions for children under six the program? itself, the developmental ramifications are manualized approach specifically devel- years of age whose brains have significant. Peer interactions are neces- oped for individuals with an ASD while greater plasticity and who should be As children with ASDs typically lack sary to develop the skills for maintaining others used techniques developed for developing skills they can practice good generalization skills, it is necessary conversation, taking perspective, playing other populations. Others simply de- throughout elementary school to provide more specific opportunities for appropriately, controlling emotional ex- scribed their approaches in greater or practice in realistic settings. This can be pression, negotiating conflict, and experi- lesser detail. Only five studies included a • Need-specific programs that can dif- implemented through parent involvement encing intimacy. Without these experi- comparison group and none used random- ferentiate between those who need with each session’s lesson, rehearsal and ences in childhood, establishing a positive ized assignment to treatment group. None very basic versus more advanced skill reinforcement homework for members, adulthood is very difficult. So, the child of the studies could be considered an ef- development and prescribed member interaction be- with the developmental differences of fectiveness study, that is, one that exam- tween sessions. Interventions can also autism suffers the additional burden of ines the generalizability of gains to other • Consistent use of measurements take place in actual life locations. Of im- limited experience in critical areas, result- settings. White et al. concluded that the in existing school and community so- portance, as well, is the therapist’s orien- ing in what we so often see in young state of research about social skills groups cial skills programs to assess if partici- tation to achieving measurable goals. adults as inability to establish relation- is still in its infancy. However, they iden- pants are meeting their specified goals Does the group leader: ships or maintain a job and personal inde- tified some promising strategies, based on pendence. Therefore it is no wonder that what was demonstrated in the studies, that Bellini, Peters, Benner & Hope re- • Assess each member’s needs before so many clinicians and educational pro- should be considered in future program viewed social skills interventions being inclusion in the group? fessionals try to provide development in development. These include stimulating delivered in school settings. As social the area of social skills. We all know it is social motivation, rewarding social initia- skills development is almost universally • Have plans for assessing effectiveness? critical for successful adulthood. But is tion, reinforcing appropriate social re- stated as a goal for special education stu- what is being typically provided in sponding, treating interfering behaviors, dents with ASDs, this is a particularly see Social Skills Groups on page 45 PAGE 16 AUTISM SPECTRUM NEWS ~ FALL 2008 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 17 Evidence-Based Practices for Educating Children with ASD

By Cindy Alterson, PhD, BCBA eral law (IDEA) to complete a functional to cover ABA as a service for individuals Principal and Program Director behavioral assessment for an individual with autism (Arizona, Florida, Indiana, Min- Devereux Millwood Learning Center on any behavior that interferes with learn- nesota, South Carolina, and Texas). Over ing. The determination that a challenging 20 states have no such laws, and no bills on behavior functions to help a child escape the horizon to address this issue. he use of interventions derived from difficult tasks, and then the develop- It is important for autism intervention from principles of applied behav- ment of a program to help that child com- that educational and related service pro- ior analysis (ABA) has a decades municate “I need help” may in some cir- viders become more attuned to the need -long history in providing effec- cumstances, be completed by licensed for empirical evaluation of teaching strate- Ttive methods of ameliorating some of the clinical staff, such as a psychologist and a gies. As a field, education is rife with “fad” symptoms of autism spectrum disorders. speech pathologist. For this intervention instructional practices (Jacobson, Foxx, & As a notable example, functional commu- to be truly effective, it must be imple- Mulick, 2005); special education less so nication training (FCT)(Durand, 1990) has mented as well by teachers, aides, other than general education, as the develop- been shown to be an effective way to de- classroom support staff and parents so ment of strategies for students who strug- crease behaviors that interfere with learn- that the new behavior of requesting a gle to learn in traditional ways has re- ing, including behaviors that can be signifi- break is demonstrated across all settings. quired research analysis to some extent. cantly or severely harmful. Briefly, FCT And in all likelihood, it is probably the For autism in particular, the type of strate- assumes that all challenging behaviors teacher, aide, support staff and parents gies that are needed to ameliorate symp- have communicative intent, and FCT de- who complete the FBA and develop FCT toms can be so complex and varied and can creases those challenging behaviors by as an intervention in most schools any- need contributions from medical, psychiat- providing an individual with alternate, way. That FCT is now thankfully pro- ric, behavioral, speech, occupational and more appropriate ways to communicate vided by educational teams, has resulted in physical therapies, that true analysis of that intent. So a child who throws himself more students with autism included in less what is effective for each individual should on the floor when asked to do a difficult Cindy Alterson, PhD, BCBA restrictive settings and tremendous ad- be a required component of the child’s task, may be provided with a way to com- vancements for individual students to have educational plan. municate “I need help.” speech pathology, and can also be consid- better behavioral and social outcomes. It would greatly benefit autism ser- Based on the example provided, one ered a clinical intervention. Clinical However, it also may have contributed to vices if all providers were required to may wonder whether to consider func- fields like medicine and psychology can the current debates over whether insurance learn how to conduct and consume re- tional communication training in a clinical demonstrate, through a history of re- companies will cover ABA as an interven- search in single-case design. When a or educational intervention. The elimina- search, that providing this intervention tion with autism. Any good intervention medical intervention is tested, it is demon- tion or decreasing of challenging behav- can result in certain improved outcomes. plan using ABA as a model will include strated effective if the average amount of iors has traditionally been under the pur- These interventions may be defined as increasing skills. It is usually a school’s change in all individuals combined pre-to view of the medical, psychiatric or psy- evidence-based and it is the expectation of responsibility to teach new skills. Why post-treatment is greater for the sample chological fields and thus may be seen as insurance companies that an intervention would a medical insurance company take on who received the intervention than those a clinical intervention. Helping an indi- prove its ability to reach certain outcomes the task of education? To the best of my who didn’t. This may be acceptable in vidual learn to state “I need help” has before it will be paid for by them. knowledge, only six states have a law in traditionally been under the purview of However, schools are required by fed- place requiring private insurance companies see Educating Children on page 43

What Parents Should Consider When Evaluating School Programs for their Child with Autism

By Todd Harris, PhD (and/or appear to be listening), following mestic and vocational skills. Parents Are these plans proactive and designed to and Karen Neifer, MEd instructions, actively completing work, should also ask about the level and inten- teach appropriate alternatives to replace Devereux CARES and/or appropriately engaged with recrea- sity of a school's community-based in- challenging behaviors versus plans that tional materials (such as toys, a computer, struction program. For optimal progress, emphasize reactive strategies and what to a book, etc.). Ideally, students should be most students should receive frequent do when the behaviors occur? Another ne of the greatest challenges engaged at least 80% of the time. instruction in community locations, such consideration is how staff responds to that parents of children with Parents should also carefully note the as the grocery store, at least weekly. This unwanted behavior. Are staff members disabilities face is finding the number of learning opportunities for com- type of instruction should also be sup- calm when addressing challenging behav- O most appropriate educational munication and social skill instruction that ported by instruction that takes place out- iors, or do they get upset and/or show program. When looking for a school for a are presented. Good programs will sys- side of the classroom in other locations their frustration? child with autism, the parents' task often tematically arrange their learning environ- within the school (such as the office, li- is complex and difficult, but understand- ments so students will need to frequently brary, lunchroom and/or kitchen, etc). Social Considerations ing instructional and social variables will communicate. For example, at snack time, When observing structured teaching, help in making the right decision. students are encouraged to ask for their parents should look for evidence that While it's crucial to consider the in- snack rather than having the teacher sim- there is a motivational system in place structional aspects of a school, the social Instructional Considerations ply present it to them. (such as a token or point card system), fun climate should be thought of as equally There should also be obvious chances materials and visual supports to enhance important. In particular, parents should First and foremost, parents need to de- to learn and practice social skills. These understanding (such as a visual schedule, pay close attention to the frequency and termine if the instructional strategies used types of skills can range from something pictorial reward cards, word/picture quality of staff-to-student interactions. by a school and its philosophy are consis- as simple as looking at a speaker, greeting prompt cards and ). Families Not only do staff members need to be tent with what they feel will be effective others and taking turns, to more complex should also ask how staff are trained to highly supportive with students, but they for their child. Ensuring this "goodness of skills such as saying "please" and "thank implement different strategies, as well as also need to deliver high rates of verbal fit" is critical and can be assessed by not you," engaging in conversations and giv- what systems are in place to ensure that praise. This praise should be varied and only asking questions of a school adminis- ing compliments. Using snack time as an programs are consistently implemented offered in an enthusiastic and animated trator, but also by touring a program and example, students can be taught to take across time and staff (i.e., how often are manner. Families should also take note of observing classrooms in action. turns pouring their own juice, passing administrators or supervisors in the class- the frequency of corrective feedback and While observing a classroom, parents napkins to other students and saying rooms observing staff). Parents should also how it's delivered (i.e., in a kind way as should note the engagement levels of stu- "thank you" when receiving food. determine if the teaching methods and opposed to using a harsh and disapprov- dents. For learning to occur, a student It will also be important that independ- other types of interventions used by a ing tone). If instruction is designed care- must be frequently and appropriately en- ence and generalization areas are targeted. school are supported by scientific research. fully, error rates will be low and the use gaged with materials, as well as staff and Families should look for evidence that A parent should ask about the school's of corrective feedback can be minimized. other children. During an observation, students are taught not only academics (or philosophy regarding reducing unwanted Most experts agree that for every instance select several students to watch and deter- functional academics), but also self-care, behaviors. Are functional behavior as- mine if they are watching the instructor motor skills, recreational/play, and do- sessments used for program planning? see The Right School on page 54 PAGE 18 AUTISM SPECTRUM NEWS ~ FALL 2008 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 19

Identifying Émigré Children with Speci al Needs in Mainstream Preschools The Brooklyn Autism Spectrum Disorder Initiative

By Bruce A. Grellong, PhD dren and with the specialists who visit and Fern Fisher, MA, MS, LCSW their classrooms. We explained who the Jewish Board of Family and Children’s specialists are: Occupational Therapist Services (JBFCS) (OT), Physical Therapist (PT), Special Education Itinerant Teacher (SEIT) and/or Play Therapist, and what their area of rina was puzzling to her teachers in practice tries to accomplish. the day care center. For a 3 ½ year The reality of specialists in early child- old, she spoke very little, sometimes hood classrooms and what having other mixing English and Russian words practitioners in your classroom means to orI phrases. She seemed to like being classroom teachers is another topic not ad- nearby the other children but did not initi- dressed in most pre-service or in-service ate interaction or seem to follow the se- teacher training. This was a class where quence of activities going on around her. discussion was central to the goal of rela- She used only a few materials in the room tionship building in the service of enhancing and always in the same way and some- the sense of community in the classroom. times resisted changing activities. Her Participant teachers were very inter- family had been in the U.S. about 2 years, ested in knowing how they could work so maybe she was unfamiliar with the more effectively with specialists. More- language or the routines of a busy New over, they wanted to acquaint themselves York day care center. Irina’s teachers with helpful classroom strategies and in- needed some guidance to better under- terventions to address the problems of stand her development and what Irina children when the specialists were not on- needed. They worried about how they Bruce A. Grellong, PhD Fern Fisher, MA, MS, LCSW site. These included how to help specific would communicate their questions and children with language acquisition, social concerns to Irina’s parents. Our project strongly that knowledgeable early child- clearly showed the sometimes extreme be- skills, self-regulation and managing their was developed specifically to help early hood educators could help these parents haviors associated with ASD. It highlighted anger and aggression. Teachers contributed child care settings that serve émigré fami- by offering support and information and children from infancy to age five and in- a lot of anecdotal information and were lies become better able to meet such spe- by instilling the confidence to find thera- cluded children from many backgrounds. pleased to receive individual and specific as cial needs as emerged with Irina and her peutic services when necessary. Participants also read and assessed well as more general recommendations. family. We accomplished this through a The funders sought expertise from The descriptive anecdotes that involved chil- teacher training program on autism spec- Jewish Board of Family and Children’s dren who had subtle signs of ASD, but Consultation trum disorders and ongoing early child- Services both for well-informed teachers to still exhibited behaviors that should cause hood consultation. work with the four chosen sites in Brooklyn concern. The ability to understand these A series of teacher training workshops Nowadays there are more children diag- and for experienced early childhood consult- anecdotes was based on understanding of such as those described above are not nosed with Autism Spectrum Disorders ants to provide consultation services to set- development from the previous class. sufficient to sustain the teacher’s learning (ASD) than ever before. Yet teachers trained tings that didn’t already have it. or support teachers as they take on the to work with young children in mainstream Working Closely with Parents difficult tasks of including youngsters early childhood programs are not routinely Course Design with special needs in their classroom and taught about spectrum disorders. Because of Changes in the field, in family life, in being able to work collaboratively and the proven value of early intervention, and The teaching portion of this grant was identification and remediation for devel- empathically with the parents of these the need for teachers to have information designed to cover normative development, opmental problems have all increased the children. For that reason, this project also about ASD, a course was designed to pro- atypical development, communication and responsibilities of teaching staff to inter- placed early childhood consultants in each vide early childhood educators with infor- interactions with parents, classroom man- act with parents in helpful ways. The participating site. These consultants had mation to help them become aware of chil- agement and problem-solving. The four course covered both daily parent/teacher experience and training in work with spe- dren who may be on the spectrum and to session course included supplemental interactions and then the very complicated cial needs children and autism spectrum understand and better serve these children in readings, information about important and difficult meetings that take place disorders in particular. Moreover, the their classrooms. The community-based websites, discussion, a listing of commu- when a child is in difficulty and needs to consultants were all sensitive to the cul- sites that participated in this program each nity resources and videos. The program be evaluated by outside professionals. tural issues of the émigré families in the served émigré families (primarily, but not covered four distinct areas: Just as early childhood education for centers and in most cases the consultants exclusively Russian) so it was important teachers doesn’t include ASD awareness, were also bilingual. The consultants en- that our program be bicultural-bilingual in Typical Development, Infancy to Age 5: teacher training for early childhood edu- abled the teachers to feel better prepared order to address the unique needs of families Temperament, Personality, Age & Stage cators rarely includes the complicated to include children with a range of devel- unfamiliar with both the language and cul- work they sometimes do with parents. opmental challenges in their classrooms. ture of the dominant community served by Knowledge of gov- Work with parents is always central to Moreover, the consultants were there the day care centers. erns the principles of practice for early practice, but when parents begin to realize to work with the directors and the parents The funding for this course was made childhood education. This session covered that their child isn’t managing in pre- themselves in order to put into motion the possible by a partnership grant from the physical, cognitive, social, emotional and school, they experience indescribable efforts necessary to have these children UJA-Federation of New York, Butler linguistic development and explored how anxiety and pain. evaluated and become eligible for all the Foundation and New York Community growth, maturation and certain behaviors, Training can help professionals be- therapeutic interventions needed to ad- Trust. The course became a part of a lar- beginning in infancy, follow a well-defined come more empathic toward parents, re- dress their challenges. We have found ger program that was designed to support sequence in typically developing children. specting both their feelings and culture. that for émigré parents in particular, the community-based organizations in early Teachers can develop knowledge of the process of understanding and accepting identification of children who may be on Atypical Development, Infancy to Age 5: way in which to approach parents and be their child’s developmental differences the spectrum, support efforts by schools Red Flag Behaviors able to make appropriate suggestions and then negotiating a complex system of and parents to provide these children with when help is needed. Teachers can also evaluation, intervention services, and enti- the services they require and integrate the Participants were questioned about become familiar with the services avail- tlements is daunting and confusing. Ac- children into the community. their familiarity with ASD in an effort to able in their community and can be ready complishing this outcome became a cen- The funding organizations conducted a look at their previous knowledge and ex- to lend a hand to parents when it is neces- tral role for the consultants. twenty month needs assessment and were periences with children who displayed a sary for them to negotiate the public edu- Participating teachers became open to convinced that early childhood teacher variety of behaviors that were either hard cation entitlement system. new ideas and new ways of working with education would be crucial in helping to to understand or difficult to manage. children as they became informed about identify ASD children and helping their We used a ‘First Signs’ video aimed at Classroom Management: special needs children and working with families. Parents with children on the improving observational skills and show- Problem Solving Together their parents. The support of the consult- spectrum often become more conscious of ing the routine screening that is designed ants each week also helped further inspire their children’s difficulties when pre- to identify children at risk for ASD and This class explored the day to day ex- school begins. The funders believed other developmental disorders. The video periences that teachers have with the chil- see Émigré Children on page 45 PAGE 20 AUTISM SPECTRUM NEWS ~ FALL 2008 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 21 Vital Services Available at Long Island Psychiatric

By James B. Snyder, MD ately to them. Our groups are led by ex- therapies to achieve the best possible Long Island Psychiatric, PLLC perienced consultants with knowledge in treatment outcome and prognosis. child development and the treatment of At Long Island Psychiatric we under- children with Learning Disabilities, As- stand that when it comes to choosing a ince our inception in 2001, Long perger Syndrome, Autistic Spectrum Dis- right treatment, there is no “one size fits Island Psychiatric has provided orders and other related childhood disor- all”. Our treatment selection is based on expert comprehensive treatment ders. Our behavioral team works closely up-to-date clinical research and neurosci- S for children and adults afflicted with schools and vocational programs to ence, with special attention to the individ- with Autism, Asperger Syndrome and co- establish a fully integrated, individualized ual’s personal and physiological make-up. morbid mental health disorders. Our treatment plan. Psychiatrists at Long Island Psychiatric highly regarded, private outpatient treat- Accurate assessments provide the basis believe that proper medication selection ment center provides distinguished ser- for the most effective treatment strategies. and overall treatment success begins with vice to countless families and children At Long Island Psychiatric, we believe establishing the most accurate diagnosis and is acknowledged as one of the most that expert diagnostic assessments and and a thorough assessment to uncover well-established centers of excellence for specialized treatment strategies lay the commonly missed co-existing conditions. Autistim and Asperger Syndrome in our foundation for reducing the intensity of Our experienced clinicians remain community. interfering symptoms and removing ob- determined in providing the highest stan- At Long Island Psychiatric, we place a stacles standing in the way of develop- dard in diagnosis, treatment planning and strong emphasis on early detection, diag- mental progress. Our center is dedicated advocacy for children, adolescents, adults nosis and comprehensive treatment plan- to providing state-of-the-art, evidence- and families suffering with Autism and ning. Some of the finest and well- based therapies, education and resources, Asperger Syndrome across the entire life- respected clinicians have joined together which aim directly at real world demands span. As established professionals in this at our center to provide a collaborative and expectations. area, we’ve made a commitment to con- treatment team approach; offering ser- Medications are sometimes a crucial tinually respond to the increasing needs of vices from several disciplines including James B. Snyder, MD part of recovery from many neuro- our community by providing the most up Psychiatry, Psychology, Social Work, biological disorders. Psychiatrists at to date, expert level care and services for Nutrition and Art Therapy. Our highly help to children and adolescents who are Long Island Psychiatric have extensive those who suffer with these unique and regarded Social Skills Group Program sets having difficulty with peer relationships training and experience in treating a wide specialized disorders. the stage for self-esteem enrichment and and self-esteem issues. Children who are array of neuro-biological and psychiatric For more information about our staff the development of friendships through socially isolated or have problems with conditions. Our team approach empha- and services, please visit us at skilled counseling, drama and art thera- teasing and bullying learn to recognize sizes the importance of using medications www.lipsychiatric.com, or call us at pies. The program is designed to offer social clues and how to respond appropri- in conjunction with talking and behavioral (516) 626-2182.

View From the Spectrum Matching Best Practice to Children’s Needs

By Stephen M. Shore, EdD Different Strokes for Different Folks with children on the autism spectrum. As Executive Director I began my literature search on different Autism Spectrum Disorder Consulting When I was diagnosed in 1964 the methods I found there to be no such re- amount of material written about autism search, possibly due to a combination of could fit in a single bookshelf and was practical and political reasons. oom! The “Autism Bomb” ex- restricted to “highly qualified” medical Practically, finding matched groups of plodes. Like many children professionals. There was no alphabet soup children with autism to accommodate a with regressive autism I lost of ABA, DIR, DLT, MM, RDI, or study spanning several approaches, as functional communication, had SCERTS, which makes up just a small well as finding the needed control groups tantrums,B engaged in self-stimulatory and piece of what there is available today. A is problematic at best. Even if several abusive behaviors beginning at 18 recent search for “autism” on Google.com dozen matched children could be located months. Others are affected earlier and now brings 24,600,000 hits. The chal- there would be the challenge of control- mothers may report that their child was lenge now is to sort out appropriate infor- ling for variables such therapist experi- “different” even before birth. Life was mation that best matches the needs of the ence and efficacy, home life, exposure to never the same again from me, nor for person with autism you are supporting. previous interventions, and biomedical others supporting me. More than ever there are myriad inter- issues. Additionally, there are ethical or It was the mid 1960’s and there was vention, approaches, and techniques for moral concerns concerning withholding very little information about this seem- working with people on the autism spec- intervention from a population in desper- ingly psychiatric condition that affected trum. Stephen Edelson, Executive Direc- ate need of support. only 1 in 10,000 people and was tanta- tor of the Autism Research Institute The second reason is that I have found mount to a life sentence of dependency. Stephen M. Shore, EdD (www.autism.com) suggests that children that many practitioners of certain ap- Possibly, with luck and much effort, with autism need treatment in three main proaches get locked into their methodolo- adulthood in a group home and employ- count the behaviorally oriented or other areas of interventions, including: educa- gies to the exclusion of others and to the ment in a sheltered workshop could be- approaches for children with autism? No. tional/behavioral/developmental, bio- detriment of people on the autism spec- come reality. My parents were told to put It just means that my parents were able to medical, and sensory integration. Then trum. The diverse nature of the autism their “sick” child in an institution and to provide for my needs and did what was there are other supporting techniques such spectrum indicates that different people get on with their lives. best for me at that time. as Powercards, Picture Exchange Sys- will have different needs in terms of inter- Fortunately, my parents advocated on Grade school, especially at the elemen- tems, assistive communication devices, vention. It is not a one size fits all situa- my behalf, and implemented what would tary level, was very difficult. However, I etc., not to mention all the bio-medical tion. No one person or approach has all today be best described as a home-based did graduate. In fact, I made it through interventions that are available. the answers. intensive early intervention program em- higher education and have recently com- Since I was unable to find work done in phasizing music, movement, sensory inte- pleted my doctoral dissertation on matching Matching Best Practice this area, I felt that the best way to open the gration, narration, and imitation. Done at best practice to the needs of children on the to Individual Needs line of research into comparative approaches a time when the term “early intervention” autism spectrum. I have been married for 18 was to gather more information by find- hadn’t even been developed, their work years and live a fulfilling, productive, and One of my special or focused interests ing out how leading theorists and devel- closely aligned with developmental- interdependent life. Not an independent life, (termed “restricted” by the DSM IV) is opers of today’s promising approaches cognitive or affective approaches such as because only hermits live without appropri- comparing educational/behavioral/ the Miller Method or DIR. Does that dis- ately depending on others for their needs. developmental approaches for working see Best Practice on page 45 PAGE 22 AUTISM SPECTRUM NEWS ~ FALL 2008

AUTISM RESEARCH STUDY

Cutting edge techniques using Transcranial Magnetic Stimulation (TMS) and functional Magnetic Resonance Imaging (fMRI) will be used to map brain function and learn more about the symptoms of autism.

If you are between the ages of 18-35 and have Autism, Asperger’s Syndrome, an Autism Spectrum Disorder, or other issues with social communication or repetitive behaviors, please contact us for more information.

Columbia University Medical Center

For information call:

(212) 543-5767

or email [email protected] AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 23 The Path Forward: Brain Stimulation in Autism

By Alexandra L. Sporn, MD Here at Columbia, we are developing a Assistant Professor of Clinical Psychiatry new approach to study brain functioning Columbia University College in autism. We are bridging the fields of of Physicians and Surgeons fMRI and noninvasive brain stimulation techniques, such as Transcranial Magnetic Stimulation and transcranial Direct Cur- utism and Autism Spectrum rent Stimulation (tDCS). Disorders (ASD), while once considered extremely rare, are What is Transcranial A now recognized as relatively Magnetic Stimulation (TMS)? common. At Columbia University Medi- cal Center, we are using the cutting edge TMS is a noninvasive tool that induces technology to develop an innovative ap- focal electrical currents in the brain by creat- proach to studying and treating the symp- ing a magnetic field. It has been applied to toms of autism. map attention, memory, movement, and speech.(George, Nahas et al. 2003) There What Do We Know are three types of TMS: single-pulse TMS, of Brain Functioning in ASD? paired-pulse TMS, and repetitive TMS (rTMS). In single- and paired-pulse TMS, According to the DSM-IV, there are pulses are given to the motor cortex to three core symptom clusters in autism and measure various aspects of motor cortex ASD: social deficits, speech/communication excitability. In rTMS, trains of pulses at deficits and repetitive behaviors. various frequencies are given to acutely Converging evidence suggests that probe functioning of cognitive systems, or to autism involves abnormalities in brain treat disorders such as depression, OCD, or volume, (Courchesne 2004) neurotrans- schizophrenia.(George, Nahas et al. 2003). mitter systems and neuronal growth. (Courchesne and Pierce 2005) In addition, Alexandra L. Sporn, MD Sitting in a Trial TMS Treatment Our Protocols evidence links autism with abnormalities in the cerebellum, the medial temporal Why Is It Difficult to Study Autism? performing a certain task while in the Our main protocol “Neurocircuitry of lobe, and the frontal lobe.(Penn 2006) scanner, paying attention, pressing a but- Autism” is designed to use fMRI and Neurochemical findings suggest involve- Present methods of studying brain ton in response to a stimulus, which is TMS to study the neurocircuitry of autism ment of multiple neurotransmitter systems functioning mostly include structural hard for children or low-functioning pa- symptoms. Using single and double pulse (serotonergic, GABA-ergic and choliner- MRI, functional MRI (fMRI) and Positron tients. PET is invasive, and uses radioac- TMS we compare excitability of motor gic as the primary ones. (McDougle, Emission Tomography (PET). However, tive substances that have to be injected Erickson et al. 2005) fMRI, though very safe, usually requires into the bloodstream. see Brain Stimulation on page 50

Efforts in Autism Research at Columbia University Medical Center

By Bradley Peterson, MD, Chairman, molecular and cellular processes within improved treatments for these conditions. Division of Child and Adolescent the developing brain are presumed to dis- We are building the knowledge, technol- Psychiatry, Columbia University College turb (a) the formation of connections, or ogy, and collaborative ties necessary for of Physicians and Surgeons and synapses, between cells, (b) the proper making discoveries that were unimagin- New York State Psychiatric Institute integration of those cells and synapses able even a few years ago. We believe into local circuits, and (c) the organization that ultimately this course will lead to of those local circuits into large neural identifying the causes of autism and to he autism spectrum disorders or systems that process and transmit infor- developing more effective approaches to autisms (including the DSM mation across the brain. These distur- their treatment and cure. diagnoses Autistic Disorder, bances in circuit formation disrupt the Asperger’s Disorder, and Perva- brain functions that support socialization, Genes and Cells Tsive Developmental Disorder Not Other- attachment, and relatedness to other human wise Specified) are a set of developmental beings, disturbances considered to be the Many previous genetic studies of au- disorders involving problems with social “core” or defining symptoms common to all tism have been “multiplex” studies, in- behavior, communication, and repetitive of the disorders included in the term autism. volving families who have more than one behavior or interests (we will use the term Fortunately, the advent of powerful member affected. In these studies, re- “autism” to refer to the set of these disor- new research techniques, many of them searchers seek to identify inherited ge- ders). Autism is among the most debilitat- developed and used at Columbia Univer- netic patterns. A “simplex” study, a study ing of all childhood neuropsychiatric disor- sity, has brought us to a new era in which of families with only one member af- ders and has the potential to derail cognitive, we can legitimately hope to identify and fected by autism, seeks to examine the de emotional, and behavioral development. understand the genetic and environmental novo, or brand new genetic mutations that Over the past several years a growing causes of autism. These discoveries are contribute to the development of autism. appreciation for the number of individuals Bradley Peterson, MD bringing us closer to designing truly ef- The Simons Simplex Collection (SSC) is affected by these disorders and the impact fective treatments that will address the a core project and resource of the Simons they have on individuals, families, and this disorder and how we can help the peo- core symptoms of these disorders. Colum- Foundation Autism Research Initiative society at large has led researchers at Co- ple affected by it and their families. bia University is covering the gamut in (SFARI). At Columbia, the SSC team, lumbia University to study autism, its As an infant develops, his or her ge- autism research, with studies investigating headed by Dr. Bradley Peterson, is one of causes, and its potential treatments from a netic material, or DNA, controls the each link in this developmental chain: thirteen research teams across North wide range of perspectives. Our research growth of the cells which become the from genes, to cells, to brain, to behavior. America who have joined together to program is dedicated to identifying the brain, which in turn governs his or her Our program for research brings to- gather genetic samples from 2000 simplex causes of autism and to developing more behavior. The causes of autism can be gether basic and clinical neuroscientists to families. The family of each affected indi- effective approaches to diagnosis, treatment, traced to a complex interaction of many focus their attention and formidable skills vidual will also undergo a detailed set of and cure. This dedicated research team, elements adversely affecting the links of on identifying the disturbances in brain interviews and neuropsychological tests in spread throughout the Columbia campus, is this chain. The yet unknown genetic and development that cause autism, and then joining forces to help us learn more about environmental factors that influence the to use that knowledge to develop new and see Research at Columbia on page 44 PAGE 24 AUTISM SPECTRUM NEWS ~ FALL 2008 Genetic Abnormalities in Older Fathers: Implications for Autism

By Jeremy M. Silverman, PhD results have since been replicated in sev- families (~7%) as compared to multiplex Lauren J. Donnelly, BA eral other populations including those in families (~2%). and Lauren J. Brickman, BS the United States. Given the work on paternal age as a Mount Sinai School of Medicine In that same year, Wyrobek et al. risk factor for autism, CNVs in autism, (PNAS, 2006) suggested that genetic mu- and the evidence that CNVs may be in- tations, other genetic abnormalities, and creasingly common in sperm as men age, he Mount Sinai School of Medi- genomic anomalies in sperm increase in the Family Studies Research Center’s will cine’s Family Studies Research frequency as men age. now directly examine CNVs in the sperm Center has initiated a new study Finally, Sebat et al. (Science, 2007) cells of fathers of autistic children and investigating the possibility of studied de novo CNVs in simplex families fathers of normal controls. The group has Tnew genetic changes in autism and related (one ASD child), multiplex families begun collecting sperm samples in order disorders in the sperm of fathers of chil- (multiple siblings with ASD), and con- to determine whether there is an increased dren with autism. More specifically, this trols. A CNV is micro-deletion or inser- frequency of de novo CNVs in the sperm study will directly examine whether there tion on a chromosome – a tiny segment of of fathers of children with ASD in com- are elevated levels of de novo copy num- a chromosome that is missing or dupli- parison to the sperm of fathers with typi- ber variants (CNVs) in autism spectrum cated. A CNV is considered de novo cally developing children. disorders (ASD). when these genomic anomalies are pre- More information regarding this study This new study follows from an excit- sent in an individual but not in their re- can be obtained by calling Lauren Don- ing and potentially very important new spective parents. Sebat et al.’s study iden- nelly or Lauren Brickman at 212-659- line of research in autism. In 2006, re- tified 14 out of 195 ASD children with 5654 or 212-659-5655 or e-mailing us at searchers from the Mount Sinai School of CNVs (12 out of 118 simplex; 2 out of 77 [email protected] or Lau- Medicine’s Family Studies Research Cen- multiplex) and 2 out of 196 control chil- [email protected]. ter contributed to a study investigating the dren with CNVs. This suggests there is a relationship between paternal and mater- greater frequency of de novo CNVs Jeremy M. Silverman, PhD is a Professor, nal age and autism (Reichenberg et al., Jeremy M. Silverman, PhD (7.2%) in the autism sample in compari- Lauren J. Donnelly, BA is a Clinical Research Arch Gen Psychiatry, 2006). Within an son to controls (1.0%). Similarly, Mar- Coordinator and Lauren J. Brickman, BS, is a Israeli population, offspring of men 40 shall et al. (The American Journal of Hu- Clinical Research Coordinator at the Family years and older were about 6 times more younger than 30 years old. Maternal age man Genetics, 2008) suggested de novo Studies Research Center at the Mount Sinai likely to have ASD than offspring of men showed no association with ASD. These CNVs were more common in simplex School of Medicine.

The Cody Center at Stony Brook University Medical Center Excellence in Research, Clinical Services and Family Support

By John C. Pomeroy, MD the research data to identify what is most other parents made them realize that there Founding Director, The Matt & Debra relevant requiring us to be somewhat con- was a great need for a central source of Cody Center for Autism and versant with a complex range of discipli- information and support for families on Developmental Disabilities at Stony nary skills. Long Island who were affected by ASD. Brook University Medical Center In that sifting there will be a necessity In 1988 they funded a resource center to place priorities on aspects of available located in Stony Brook University’s Divi- research data that are most important for sion of Developmental Disabilities. Over e, at the Cody Center, are the individual situation or specific profes- 700 families used the center in the first pleased to join Ira and sional. No area of research really has year and it became apparent that a center David Minot’s initiative to prominence and reporting on a successful with a broader mission was necessary. W “address the need to pro- form of intervention for some clinical With their financial support the Matt and vide information, education, advocacy, aspect of individuals with Autism may be Debra Cody Center for Autism and De- and resources to the Autism community.” of more immediate importance for those velopmental Disabilities at Stony Brook Over 25 years ago, when I was both individuals, and others like them, than the University was founded in 2001. Its mis- studying and serving individuals with isolation of one gene that in the future sion is to promote excellence in clinical disorders that have come to be known as will lead to greater understanding and, treatment, research, community service, the Autism Spectrum, it was a relatively perhaps, treatment for these disorders. and education for those with Autism and easy task to keep up to date with the small Scientists from these various disciplines related developmental disabilities. The amount of literature that was published must work collaboratively and set com- Cody Center has been formally designated that related to Autism and associated dis- mon goals for their focus of study. Unfor- by the New York State legislature as a orders. With the increased awareness of John C. Pomeroy, MD tunately the scientific process is rarely State University of New York Center for these disorders has come a virtual epi- rapid and frustration with the pace of re- Autism and Developmental Disabilities. demic of publications, theories of cause such a complex neurobiological disorder search and difficulty in foreseeing the In creating the center there was a con- and treatment, support services and advo- (or, as generally agreed, group of disor- potential rewards of more basic science scious effort to systematically develop in a cacy, as well as much controversy. It is ders) that our understanding of Autism discoveries has led to considerable disap- balanced fashion the three major compo- not possible any more to feel comfortable will require integration of data from di- pointment with the mainstream academic nents of clinical service, education and with one’s own ability to adequately re- verse fields of study. These include neuro- research approach, for some. This has community outreach, and multidisciplinary view all the exciting things that are hap- anatomy, neurophysiology, neuroimaging, been accompanied by the ready availabil- research. The Cody Center provides a vari- pening in the field of Autism Spectrum genetics, cognitive neuroscience, develop- ity in the community of presently un- ety of clinical, educational and family sup- Disorders (ASD). There is tremendous mental neurobiology, behavioral psychol- proven treatments often based on theories port services to individuals on Long Island potential for this publication to assist in ogy, education, clinical and medical sci- that have also not had the necessary scien- affected by Autism and related develop- disseminating information and become a ences, as well as developing areas of tific review. Unfortunately this has led to mental disabilities as well as having a re- major resource for all involved with these study such as proteomics (essentially the divisiveness within the Autism commu- search consortium of world-class scientists disorders – personally and professionally. study of specific actions of genes) and the nity that we can hope will be addressed by who collaborate in the Cody Center Re- As implied, research in the field of utilization of neuroimaging technology to publications like Autism Spectrum News search Consortium. They are engaged in Autism has never been so promising and understand regional brain function, active and centers like our own. clinical, basic and translational research on yet so tantalizing. Scientists from so many metabolic processes, brain pathways and Matt & Debra Cody are the parents of the Stony Brook University campus, as fields of basic and clinical science have connections, and stem cell activity in the three children, all of whom have received well as at Brookhaven National Laboratory been enticed into this area of study due brain throughout the lifetime. Given all a diagnosis of Autism. Their experience and at Cold Spring Harbor Laboratory. partly to increased funding, but also be- the information available, it is apparent with their own family, education and ser- cause of the realization that Autism is that we all need to be able to sift through vice systems, and communication with see The Cody Center on page 44 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 25 Doctor Thomas Insel Speaks with Autism Spectrum News

Staff Writer vention but it is beginning to identify sub- www.aap.org/healthtopics/autism.cfm). Autism Spectrum News types of the disorder and already it is clear Nevertheless, too many parents find that that many different mutations can lead to their concerns are dismissed or when a re- ASD. NIMH also supports research on ferral for evaluation is recommended, pre- utism Spectrum News had the the efficacy and safety of various treat- cious months may be lost waiting for an unique opportunity to inter- ments, from behavioral interventions to appointment. Awareness is necessary but view Thomas R. Insel, MD. specific diets to medications. Ongoing not sufficient if resources for diagnosis and A Dr. Insel is the Director of the clinical trials are investigating the value treatment are not available. Fortunately, National Institute of Mental Health and of a range of medications, including anti- with increasing access to information on the the National Institutes of Health. We are inflammatories and antidepressants. One Internet and growing awareness of the needs delighted to present Dr. Insel and his can- of the most exciting areas of research has of parents with autistic children, resources did discussion on the subject of autism. been the study of infants at high risk of are becoming easier to find in many parts of developing ASD. These “baby sib” stud- the country. Q: Dr. Insel, where are we currently in ies have demonstrated that 50% of infants our understanding of autism? who will develop autism can be identified Q: What are your hopes for the future of by their first birthday. Early detection autism education, treatment and research? A: In many ways we are still in the and early intervention is one of the most early days of autism research. But it is promising areas for ensuring the best out- A: Recently I have been reading about the an active research area and many prom- come for children at risk. polio epidemic of the 1950’s. This was a ising efforts are underway led by top time of broad public concern and confu- scientists. We think of autism as a de- Q: What do parents and members of the sion, dominated by a range of theories and velopmental brain disorder, but we do treatment community need to know about therapies, all advocated passionately in not know when, where, or how it devel- Thomas R. Insel, MD early detection and treatment of autism? the absence of scientific data. Fifty years ops. Most scientists consider autism to A: NIMH is only one of several govern- later, none of this matters because polio is be the result of genetic risk as well as ment and private sources of ASD research A: One of the biggest shifts in medicine in largely a history lesson and not a threat. I environmental exposures, but we have funding, including other institutes within the past two decades has been the emphasis would like my grandchildren to read a very few specific genes and even fewer the NIH, CDC, Dept of Defense, Autism on early detection and early treatment. In book about autism as a history lesson be- specific environmental factors that have Speaks, and the Simons Foundation. cancer and heart disease, this approach has cause every child at risk for autism has been empirically validated. We now NIMH supports a broad range of research led to profound improvements in outcomes. grown up to enjoy a full and productive life. recognize that autism is a heterogeneous including basic molecular studies, clinical We can expect the same effects with autism. group of disorders (Autism Spectrum trials, and services research which meas- Most scientists believe that the earlier ASD Q: How can Autism Spectrum News best Disorder, ASD). Indeed, we should ures the effectiveness and costs of ser- can be detected and treated, the better the serve the needs of the family, treatment, probably become accustomed to speak- vices in different settings. In virtually outcome for most children. Ideally, we and scientific community? ing of “autisms” rather than “autism.” every area of biomedical research, genet- would like to identify the disorder or risk for This heterogeneity is found not only in ics is transforming our understanding of the disorder with a biomarker, long before A: I am pleased to see the initiation of the clinical features, but almost cer- human diseases. This is just beginning to any behavioral signs develop. We are not Autism Spectrum News, and to be a part of tainly in the biological bases of ASD. happen with ASD with more than 10% of there now, but this needs to be a goal for the this inaugural issue, as this publication We need much more information to un- people with autism having a known ge- future. Today, parents need to know the and others like it play a critical role in derstand the various autisms. What are netic lesion. While we have yet to identify importance of early detection based on be- ensuring the communication of research the specific risk factors for each? And a genetic “cause” in the other 90%, com- havioral signs. The CDC and Autism findings and evidence-based treatment what are the best interventions for a given mon variations may confer risk for devel- Speaks have sponsored campaigns to in- options to clinicians and families. The individual on the autism spectrum? oping autism after exposure to environ- crease awareness and information on early dissemination of information is a vital mental factors. In many areas of medi- red flags that help parents distinguish be- component of public health. I hope that Q: What areas of research is NIMH ex- cine, genetics has led to the development tween typical and delayed development. Autism Spectrum News will help individu- ploring that might hold a key to unlocking of novel targeted treatments or prevention The American Academy of Pediatrics now als with ASD and their families receive the mysteries of the cause and treatment strategies. Autism genetic research has recommends screening all children at 18 the best information so they can make the of autism? yet to yield this type of treatment or pre- months and again at 24 months (http:// best choices.

A Path Into the World Passion for Football Brings a Boy With Autism Out of His Shell

By Robin Morris autism who will truly comprehend. It was beyond words could not alleviate his ag- Patient Advocate raining - a cold and bitter kind of weather ony. But we vowed to help him learn that chills your bones. The doors had flexibility, a daunting challenge for those closed, denying entry to the hundreds of on the autism spectrum. he NFL draft is a machine, hopefuls who wanted to witness football Time and intervention were our part- hardly designed for the faint of history. Disappointment prevailed as the ners. It is an arduous task to usher chil- stamina. Fans line up at the mob began to disperse. Paul, plagued by dren with autism into the typical social doors of such landmarks as the rigidity of autism, could not reconcile world. Every nuance must be taught to a TMadison Square Garden, or Radio City his frustration. So there he wailed in the child with autism. There is no natural pro- Music Hall this year, on a first-come, first rain, right at the door of Madison Square gression for understanding idiom or ban- -served basis and hope to hear the name Garden, heartbroken. How could we ex- ter. Words are meaningless without com- of their choice player scooped up by their plain to the gawking crowd that autism prehension. We made Herculean efforts favorite team. It is a day of promise for vandalizes the social and neurological with little response, fully aware that hard young talent and fodder for the fans; an- systems of those who suffer from it? How work does not necessarily glean success. other vehicle that creates heroes. could we explain what drives a child tor- That explains the complexity and mystery What's interesting about the coveted mented with such behaviors? It is foreign of autism. results of the NFL draft is that ultimately to those who navigate the social world A year later, Paul again began to fixate it is simply a list. Lists are food for indi- within customary guidelines. The disap- on the NFL draft. Perhaps it was simple viduals with autism. Lists provide comfort Robin Morris pointment for Paul was so tangible that fear of the inevitable or a last-effort idea, and stability. Lists are a constant; once his body was visibly shaken. The only but we encouraged Paul to write a letter to announced, they do not change. Lists have tiae with precise notation. way that he could articulate his pain was Jeff Lurie, owner of the Philadelphia Ea- been the fruit of our child's steadiness in a One dreary Saturday in spring 2003 to repeat a mantra that he hadn't "been gles, whose brother suffers from autism. world of uncertainty. A devout sports fan, marked an event that diehard football fans good enough to go to the draft." our son Paul, 15, thrives on athletic minu- might appreciate, but it is the families of Words failed us. We who love this boy see A Path on page 42 PAGE 26 AUTISM SPECTRUM NEWS ~ FALL 2008 Introducing the Editorial Board of Autism Spectrum News

Cindy Alterson, PhD, BCBA Lynda Geller, PhD Principal and Program Director Clinical Director of the Asperger Institute Devereux Millwood Learning Center NYU Child Study Center

r. Cindy Alterson received her r. Geller is one of the nation’s BA in Psychology from Bing- foremost experts on Asperger hamton University- State Uni- Syndrome and Autism Spec- versity of New York in 1993 trum Disorders. She is a Clini- calD Associate Professor of Child and Ado- andD her Ph.D. in Clinical Psychology from State University of New York- Uni- lescent Psychiatry at the NYU School of versity at Albany in 1999. Her pre- Medicine and the Clinical Director of the doctoral internship was completed at the NYU Child Study Center’s Asperger Insti- renowned Neurobehavioral Unit of the tute, where she is responsible for the de- Kennedy-Krieger Institute- Johns Hop- velopment of innovative clinical services, kins University School of Medicine. Dr. the supervision of therapeutic care for indi- Alterson is a licensed psychologist, Board viduals with Asperger Syndrome and re- Certified Behavior Analyst, and a NYS lated conditions, and the training of young School District Administrator. professionals planning a career in autism. Dr. Alterson is currently the Principal Dr. Geller is a frequent speaker for and Program Director of the Devereux professional and family audiences on Millwood Learning Center (DMLC). evidence-based treatment and support DMLC is a non-public school utilizing services and consults to a wide variety of principles of applied behavior analysis Cindy Alterson, PhD, BCBA schools, community agencies, and univer- serving 48 children on the autism spec- sities regarding Asperger Syndrome trum from age five to 21 in Westchester Dr. Alterson is an adjunct faculty mem- across the lifespan. She also developed a Lynda Geller, PhD County, NY. Dr. Alterson provides ad- ber of Manhattanville College and teaches training DVD for families whose children ministrative and clinical expertise to the courses in applied behavior analysis, func- with Asperger Syndrome are planning for school towards skill acquisition and re- tional behavior assessment and functional the college experience. Development at the University of Miami duction of behaviors that interfere with analysis in the Department of Special Edu- Dr. Geller earned her Ph.D. in Counsel- and Georgetown University Child Develop- learning and consultation to part- and full cation. She participates on the New York ing Psychology from the University of Mi- ment Center. Dr. Geller serves on the pro- -time inclusion programs in less restric- State Child-specific Exceptions Panel, and ami and her M.A. in School Psychology fessional advisory boards of the Asperger tive settings. She started a pre-vocational is a frequent presenter at local, state and from the University of Illinois. She com- Syndrome and Higher-Functioning Autism program which has since grown to in- national conferences in the areas of posi- pleted an externship and an internship in Association and the YAI/ National Institute clude 24 students at more than ten job tive behavior support and instruction of Developmental Disabilities and Pediatric for People with Disabilities Network’s Cen- sites in the local community. students with autism spectrum disorders. Psychology at Mailman Center for Child ter for Autism.

Eric Hollander, MD, Director Ami Klin, PhD, Director Seaver and New York Autism Program Autism Center of Excellence Yale Child Study Center Mount Sinai School of Medicine

r. Klin is the Harris Associate r. Hollander is the Esther and Professor of Child Psychology Joseph Klingenstein Professor and Psychiatry at the Yale and Chair of Psychiatry at the Child Study Center, Yale Uni- Mount Sinai School of Medi- versityD School of Medicine, in New Ha- cineD in New York City. He is also Direc- ven, . He obtained his Ph.D. tor of the Seaver and Greater New York from the University of London, and com- Autism Center of Excellence, also at the pleted clinical and research post-doctoral Mount Sinai School of Medicine. fellowships at the Yale Child Study Cen- Dr. Hollander received his B.A. from ter. He directs the Autism Program at Brandeis University (1978), and his M.D. Yale, which is one of the National Insti- from SUNY Downstate Medical College, tutes of Health Autism Centers of Excel- Brooklyn (1982). He completed his in- lence. This program includes a broad ternship in Internal Medicine at Mt. Sinai range of diagnostic and treatment ser- Hospital (1983), residency and chief resi- vices, and an interdisciplinary program of dent in psychiatry at Mt Sinai School of research that includes behavioral, brain, Medicine (1986), and his NIMH research and genetics investigations. The program fellowship at Columbia University Col- also provides training in a broad range of lege of Physicians and Surgeons (1988). disciplines, and is strongly committed to Ami Klin, PhD He was appointed Associate Professor of Eric Hollander, MD advocacy at the local, national and inter- Psychiatry at Columbia University Col- national levels, with collaborations in related conditions. He is also the co- lege of Physicians and Surgeons in 1992. several countries in Europe, Israel, and editor of a textbook on Asperger Syn- He joined the faculty of Mount Sinai treatment trial of pediatric body dysmor- Latin America. Dr. Klin’s primary re- drome published by Guilford Press (soon School of Medicine as an Associate Pro- phic disorder. He is the principal investi- search activities focus on the social mind to be released in its second edition), the fessor of Psychiatry in 1993, and rose gator of the autism Clinical Trials Net- and the social brain, and on aspects of third edition of the Handbook of Autism through the academic ranks at MSSM and work, and Chair of the eight center NIH autism from infancy through adulthood. and Pervasive Developmental Disorders was appointed Professor in 1996. STAART Autism Steering Committee. These studies include novel techniques published by Wiley, and several special Dr. Hollander is the principal investi- He is involved in research on the neuro- such as the eye-tracking laboratory that issues of professional journals focused on gator for a number of current federal pharmacology, neuropsychiatry, func- allows researchers to see the world autism and related disorders. grants, including the NIH Greater New tional imaging, and treatment of obses- through the eyes of individuals with au- Dr. Klin’s primary research interests York Autism Center of Excellence, the sive-compulsive disorder, impulsive/ tism. These techniques are now being are in fundamental mechanisms of so- NIMH Research Training Grant in Psy- aggressive personality disorders, applied in the screening of babies at risk cialization and their disruption in autism chopharmacology and Outcomes Re- for autism. He is the author of over 150 search, and an FDA funded multicenter see Dr. Hollander on page 50 publications in the field of autism and see Dr. Klin on page 40 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 27 Introducing the Editorial Board of Autism Spectrum News

Harold S. Koplewicz, MD Cecelia M. McCarton, MD Founder and Director Founder and CEO NYU Child Study Center The McCarton Foundation

arold S. Koplewicz, MD is the ith over 30 years of experi- Director of the NYU Child ence as a pediatrician, re- Study Center; Arnold and searcher, and lecturer, Debbie Simon Professor and W Cecelia McCarton, M.D., is Chair,H Department of Child and Adoles- among the nation's leading experts in diag- cent Psychiatry; Sr. Vice President and nosing and treating children with develop- Vice Dean for External Affairs, NYU mental disorders. Medical Center; Professor of Pediatrics, In 1998, Dr. McCarton founded The NYU School of Medicine; Director, Divi- McCarton Center for Developmental Pediat- sion of Child and Adolescent Psychiatry, rics, a diagnostic and treatment center dedi- Bellevue Hospital Center; Director, Na- cated to childhood developmental disorders. than Kline Institute for Psychiatric Re- The Center provides assessments and thera- search peutic interventions for a wide range of de- Cecelia M. McCarton, MD In May of 2006, Governor George Pataki velopmental disorders in children form birth and Sharon Carpinello, R.N., Ph.D., Com- to 14 years of age. She is also the founder Kennedy Center for Research in Mental Re- missioner of the New York State Office of and executive director of The McCarton tardation and Human Development at the Mental Health, appointed Dr. Koplewicz School, serving children with autism and Albert Einstein College of Medicine. the Executive Director of the Nathan S. autistic spectrum disorders, which opened in After finishing her formal training, she Kline Institute for Psychiatric Research September, 2002. It offers a dynamic and has served as Director of the Clinical Re- (NKI), making him the third person in that Harold S. Koplewicz, MD broad-based approach integrating scientifi- search Unit at the Rose F. Kennedy Center. position since its 1952 founding. NKI is one cally supported best practices from a number Her research experience includes national of only two New York State-funded re- ating only the second independent depart- of disciplines in the treatment of autism. studies on developmental complications in search institutions and is nationally and ment of a major university in the United Early in her medical career, Dr. McCarton infants with low birth weight, infant health internationally known for its pioneering States. Dr. Koplewicz was named chair- developed an affinity for children who dis- and development, and the prevention of contributions to psychiatric research in the man of this new department. played special needs. After completing her mental retardation. Dr. McCarton has also study of the etiology, treatment, prevention The NYU Child Study Center is dedi- residency in Pediatrics at the Bronx Munici- taught pediatrics for over 30 years and is and rehabilitation of severe and persistent cated to increasing the awareness of child pal Hospital Center, where she also served as currently Clinical Professor of Pediatrics at mental illnesses. mental health issues, expanding scientific chief resident, she received two prestigious the Albert Einstein College of Medicine. In October of 2006, the NYU School knowledge, and improving the treatment post-doctoral research fellowships from the She received numerous grants and has pub- of Medicine established the Department Department of Psychiatry at the Albert Ein- lished over 50 book chapters and peer- of Child and Adolescent Psychiatry, cre- see Dr. Koplewicz on page 51 stein College of Medicine and the Rose F. reviewed articles in medical journals.

Judith Omidvaran Theresa Pirraglia Parent Advocate Co-Founder and Board Member Westchester County, New York The Foundation for Educating Children with Autism

y name is Judith Omidvaran and I reside in Westchester heresa Pirraglia is the parent County, a northern suburb of a son with autism and has of New York City. My been actively involved in the journeyM into the world of autism began in field of autism since 1990. 1981 when my 2-year old son, Sina was SheT is a board member and co- diagnosed with autism. From that point in founder of the Foundation for Educat- time, I immersed myself in any type of ing Children with Autism (FECA). information I could find to best serve FECA is a non-profit organization Sina’s needs. My objective was to do what- dedicated to providing the appropriate ever I could to “normalize” him as much as educational opportunities for children possible so that he could eventually survive with autism based on applied behavior in the world without his parents. analysis (ABA), through the develop- Theresa Pirraglia One of my first goals was to find a ment of schools, inclusion and voca- school that would help Sina develop his tional programs, consumer advocacy DMLC, the first and only school in language and social behavior skills, and community outreach. the Lower Hudson Valley offering which in turn, would gradually improve Judith Omidvaran FECA was founded in 1994 by a this method of teaching children with his intellect and interaction with his peers concerned group of eight families who autism. Since its creation, DMLC has and other persons. I consulted with many knew the most appropriate method to become a model program for educat- psychiatrists and psychologists in order to myself in the world of autism. I found the educate their children was through ap- ing children with autism, and has decrease Sina’s serious emotional and need to learn everything I could about plied behavior analysis (ABA). This been used as a blueprint for other behavioral disorders that were induced by coping with his emotional difficulties. In therapy provides an extremely struc- schools in Pennsylvania and Califor- his severe anxieties, fears, and rigid searching to locate support services I tured learning environment for children nia. She has been actively involved in thought processes. He also had sensory journeyed into the world of psychiatry, with autism. At the time, there were no the planning of the foundation’s an- problems such as his dislike of being psychology, the social services system schools in the lower Hudson Valley of nual conference since 1995. touched by anyone, his acute hearing and support services systems of West- New York offering this method of Theresa was recently awarded the which made him very nervous when hear- chester County and the New York Metro- teaching, and the only way to provide Martha Fitzpatrick Citizen Advocate ing certain sounds, and his other sensory politan area. I learned how to network this intervention was to create and ad- Award by the New York State Rehabilita- disorders. Sina developed as a with other parents about resources and minister an ABA program in the indi- tion Association. Theresa has served on teenager and on June 9, 2007 his life sud- joined various support groups. I also vidual's home. the New York Autism Network, (NYAN) denly ended when he succumbed to a joined organizations that advocate for This changed in 1996, when FECA and is presently a member of the newly seizure, in spite of the medication he took people with autism, other types of celebrated the opening of the Deve- formed Autism Advisory Committee of to control his Epilepsy. reux Millwood Learning Center the Westchester County Department of Throughout Sina’s life I immersed see Judith Omidvaran on page 42 (DMLC). Theresa was a co-founder of Community Mental Health. PAGE 28 AUTISM SPECTRUM NEWS ~ FALL 2008 Introducing the Editorial Board of Autism Spectrum News

Pat Schissel, LMSW, President Alison Tepper Singer Asperger Syndrome and Executive Vice President High Functioning Autism Association Autism Speaks

at Schissel, LMSW, is the Presi- lison Tepper Singer is Execu- dent of the Asperger Syndrome tive Vice President for Autism and Higher-Functioning Autism Speaks. Singer has been with Association (AHA), a support the foundation since its launch andP education group with close to 1000 A in February, 2005 and is a staff member parent and professional members across of the Board of Directors. She served as Long Island and New York City. She Interim CEO of the organization from facilitates three of their ten support February through July 2005. Currently, groups, manages their Website and e- she supervises all of the foundation’s au- list, and is the coordinator of their two tism awareness initiatives, including its yearly conferences. She served as a award-winning public service campaign, Board of Education Trustee for close to produced in conjunction with the Ad twenty years. She is an adjunct associate Council and the Centers for Disease Con- professor at Adelphi’s Ammon School of trol (CDC). She is also the Executive in Education teaching a course on the au- Charge of Production of Autism Speaks’ tism spectrum to graduate and under- documentary “” which graduate students. Previously at Long premiered at the Sundance Film Festival Island University, CW Post Campus in in 2007 and is used in schools across the the School of Education she taught a Pat Schissel, LMSW country as a tool to teach educators about course titled, “Contemporary Issues in autism spectrum disorder. In addition, Alison Tepper Singer Autism Spectrum Disorders” to graduate she oversees all of Autism Speaks’ media students who had a focus in autism. She 1999) and co-authored a manual, Orient- relations activities and serves as a spokes- mother of a child with autism and legal is a frequent lecturer. ing New School Board Members, The person for the organization, appearing on guardian of her adult brother with autism, Ms. Schissel holds a BFA from Bos- Roslyn Public Schools, 1998. Ms. Schis- Oprah, The Apprentice, NBC Nightly she is a natural advocate. In 2007, Singer ton University and an MSW from Adel- sel is the mother of two; one an adult on News, Good Morning America, CBS was appointed by Health and Human Ser- phi University. She has published an the autism spectrum who was diagnosed Early Show and many other news pro- vices Secretary Michael Leavitt to serve article, College Planning - What You with Asperger's Syndrome in his 20's grams. Singer also played a critical role as one of six public members of the Fed- Need to Know, for The Source, A Publi- and the other an attorney who works in in the passage of the Combating Autism eral Interagency Autism Coordinating cation of ASPEN of America (Summer public interest law. Act of 2006, which authorizes the dou- Committee (IACC). She also serves on bling of current federal funding for au- the National Institute of Mental Health’s tism research. Alliance for Research Progress. In past Prior to joining Autism Speaks, Alison years she served on the IACC subcom- spent 14 years at NBC and CNBC, in a mittee for Autism Research Matrix Re- Fred Volkmar, MD variety of positions. From 1994-1999 she view and on the Institute of Medicine Director served as Vice President of Programming planning committee for the Autism and Yale Child Study Center in NBC's Cable and Business Develop- the Environment conference. For the past

ment division, where she launched NBC four years Singer has served as the co-

Desktop Video and oversaw long-term chair of the Westchester/Fairfield "Walk red R. Volkmar, M.D. is the planning for both CNBC.com and Now for Autism Research", and as co- Irving B. Harris Professor of MSNBC.com. Prior to that she served as captain of Team Scarsdale CHILD, the Child Psychiatry, Pediatrics, Producer of several top-rated CNBC pro- highest fundraising team in the nation. and Psychology and Director of grams, including The MoneyWheel, Mar- Singer also currently serves on the Execu- theF Yale University Child Study Center, ketWrap, Capital Report, Power Lunch, tive Board of the Yale Child Study Center Yale University School of Medicine. He Wall Street Journal Editorial Board and Associates Committee and the West- is also the Chief of Child Psychiatry at Wall Street Week with Louis Rukeyser. In chester County Autism Council. From Yale-New Haven Hospital, New Haven, 2005, she produced the award-winning 2003-2006 she served as Co-Chair of Connecticut. CNBC series Autism: Paying the Price. Scarsdale CHILD (Children Having Indi- A graduate of the University of Illi- Singer graduated magna cum laude vidual Learning Differences) in Scars- nois where he received in undergradu- from Yale University with a B.A. in Eco- dale, New York. ate degree in psychology in 1972 and of nomics and has an MBA from Harvard Alison is married to Dan Singer, a Stanford University where he received Business School. director in the media practice at his MD and a master’s degree in psy- Singer brings unequivocal leadership, McKinsey & Company. They live in chology in 1976 Dr. Volkmar was the vision and creativity to the senior man- Scarsdale NY with their two daughters, primary author of the American Psychi- agement of Autism Speaks. As the Jodie (10) and Lauren (8). atric Association’s DSM-IV autism and pervasive developmental disorders sec- tion. He is the author of several hun- dred scientific papers and chapters as Fred R. Volkmar, MD well as a number of books including Autism Spectrum News Asperger’s Syndrome (Guilford Press), of the American Academy of Child and Wishes to Thank All the Members Health Care for Children on the Autism Adolescent Psychiatry. In addition to Of our Editorial Board Spectrum (Woodbine Publishing), and directing the internationally known au- the Handbook of Autism (Wiley Pub- tism clinic he also serves as director of For Their Support and Participation lishing). He has served as an Associate autism research at Yale. Dr. Volkmar is Editor of the Journal of Autism and the principal investigator of three pro- At the time of printing this issue Developmental Disabilities, the Journal gram project grants including a CPEA we had not received the biographies of of Child Psychology and Psychiatry, (Collaborative Program of Excellent in and the American Journal of Psychiatry Autism) grant from the National Insti- Joel Bregman, MD, Steve Freeman, John C. Pomeroy, MD, and now serves as Editor of the Journal tute of Child Health and Human Devel- Douglas K. Stern, Esq., Richard Swierat, and Carey Zuckerman. of Autism and Developmental Disabili- opment and a STAART (Studies to Ad- ties starting in January of 2008. He vance Autism Research and Treatment) has served as co-chairperson of the au- Autism Center Grant from the National We will introduce you to them in our next issue. tism/intellectual disabilities committee Institute of Mental Health. AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 29

Autism and Inclusion in the Classroom: The Social Challenge

By Diana Friedlander can be a deadly sentence if those responsi- is a responsible starting place. Under- Doctoral Student and Special ble for overseeing the process are not standing how overwhelming school can Education Inclusion Teacher properly prepared. It is imperative that be we should ask ourselves, “Why is he/ educators receive instruction and training she acting this way? What is it about this on the methods and strategies necessary to classroom that makes it so difficult or utism is, for the most part, a insure success. Too often students with even unbearable for this student?” An social disability. The very autism are left to their own sparse devises environmental inventory which considers derivation of the word autism for unstructured times of the day such as all aspects of the classroom, noise level, A reflects a preference for isola- lunch and recess. These activities, al- lighting, space definition, peers, seating, tion. One of the most challenging tasks though loosely organized by adults, are smells ,temperature, etc. will increase the set before parents and educators integrat- highly social and peppered with unspoken teacher’s awareness of classroom sur- ing students with autism into the general childhood . roundings previously unnoticed. Observ- education classroom is overcoming social A child with autism has little or no ing how children relate and the intensity, obstacles. By the time typical children understanding of these rules unless they speed and duration of these interactions enter kindergarten they have developed are specifically taught, explained and can provide guidelines for creating a less skills and strategies which enable them to practiced under the guidance of a knowl- challenging and more understanding navigate the social aspects of the class- edgeable adult. Typical children quickly classroom environment, allowing greater room. Children with autism often do not comprehend what it means for a peer to success for all students. possess these strategies. turn their back on them, children with autism can be observed talking to the back Social Scripting A Rare Insight of a peer’s head well into the elementary Diana Friedlander grades and beyond. Carol Gray developed a method of is a professor at teaching children with autism to literally State University who has au- Inclusive Practice How Can We Help? read these social situations (Gray, 2000). tism. In her book, Emergence, Labeled With careful planning, adults target par- Autistic, she writes about her experi- Classrooms are micro societies de- Since inclusion is preferred, how can ticular social situations which have been ence in the elementary school classroom signed to facilitate learning in a routine we improve the practice? Children with troublesome in the past resulting in a lack and describes herself as a visitor from manner. Teachers strive to maintain order autism must be taught to recognize those of appropriate classroom behaviors, such another planet who had to learn the and achieve curriculum benchmarks, subtle cues, identify an implied intent as lining up to go to the lunchroom. They strange ways of the aliens (Grandin, while attempting to meet the social and and formulate a plan of action in re- then compile a booklet using simple 1986). She further shares the difficul- emotional needs of each and every child. sponse. Although typical children learn drawings and descriptive sentences to ties and successes she encountered in The needs of children with autism are so to read this blueprint usually beginning explain the procedure. Using words like her quest to gain social understanding diverse and individual and they can be in infancy through constant observation, “I will, or “You can”, help children under- giving readers a rare insight into a child quite difficult to meet in this setting. We this is not the case for children with au- stand social expectations. A positive con- struggling with the social uncertainties have learned through practice and legisla- tism. They often do not possess the tools clusion might contain phrases such as of autism. Often these overwhelming tion that inclusive environments are gen- needed for making these social, emo- “Your friends will be proud of you” to uncertainties manifest themselves in erally preferred placements for children tional and behavioral adjustments. Per- reinforce behaviors and underscore oppor- behaviors that can become barriers for with autism. It is here they have access to haps more important than math or read- tunities for social connectedness. Social inclusion. A child struggling to under- the general education curriculum and op- ing, teachers must teach students with stories can be used in a variety of settings stand the active environment of the ele- portunities to observe the day-to-day so- autism how to navigate this complex and can be designed to address simple or mentary school classroom has little abil- cial and behavioral models of typical chil- world. They must learn to see the world complex social situations. Their design is ity to appropriately interact with others. dren doing what children will do. through “autistic eyes” and recognize the unique to a particular social encounter Schools must provide supported and Unfortunately, this is the most difficult potential pitfalls their students encounter which is misunderstood or even incom- authentic opportunities for students with environment for children who have diffi- throughout a school day. Taking a close prehensible for the student with autism. autism to gain the necessary skills of culty understanding and interacting with diagnostic look at their students with social interaction. their peers. Inclusion for the autistic child autism and appreciating their confusion see Inclusion on page 48

Autism Speaks Reaches Out To Latino Community Website, Information Kit, and Walk Now for Autism Materials Now Available in Spanish

Staff Writer staff to its Autism Response Team to an- Autism Spectrum News swer phone calls and emails from Spanish- speaking families who have requested the kit and are seeking additional information n an effort to better convey important about support services in their region. information about autism to Spanish Those interested in receiving Spanish- speakers, Autism Speaks -- the na- language Walk Now for Autism brochures tion’s largest autism advocacy organi- Diana Friedlander and other printed materials, including fund- zationI -- today announced that it has begun raising guides and a one-sheet explanation to make key pages on its web site available of autism, should contact their local walk in Spanish. The organization is also releas- office. Contact information for each office ing a new Spanish-language version of its is available at www.walknowforautism.org. 100 Day Kit this summer for newly diag- “Our goal is to reach as many families nosed families and has created Walk Now as possible with key information about for Autism materials in Spanish. autism, including the importance of recog- The Autism Speaks web site nizing the early warning signs and ways to www.autismspeaks.org now features several get help,” said Mark Roithmayr, president key pages of essential information about of Autism Speaks. “This initiative is an autism in Spanish (www.autismspeaks.org/ important step toward making it easier for espanol/), including What Is Autism?, Facts, Spanish-speaking families across the coun- FAQ, Learn the Signs, and Diagnosis. try to access this critical information so In addition to offering the 100 Day Kit in that they can make informed decisions and Spanish, Autism Speaks will add bi-lingual get the services they need.” PAGE 30 AUTISM SPECTRUM NEWS ~ FALL 2008

Autism Spectrum News Asked Readers What are the Needs and Challenges Facing the Autism Community?

Stephen M. Shore, EdD Regina Brandow & Deborah Berger Patricia J. Slager, MA, SSS, LDT/C Stephanie McCaskill, MS

he potential for people with au- e believe that the chal- learly as an advocate for chil- esearch in the effectiveness of tism to lead fulfilling and pro- lenge faced by parents of dren on the Autism spectrum, I various intervention methods ductive lives is unlimited. It is children with autism is to feel that school districts are will have the most impact on our challenge to find a way to W get appropriate services C often short changing our chil- educational services for people Tempower those on the spectrum to reach dren. Districts are being near-sighted with Rwith Autism. As educators are provided for their children from birth through age success to the best of their ability. One of 21. In Long Island, New York, children regard to cost factors and they often are with additional research on how each in- the primary keys will be continued re- with autism tend to get research based not looking at the long term prognosis for tervention method is proven effective with search on matching best practices to the models of therapy through early inter- learning challenged children. By putting different profiles on the Autism Spectrum, needs of people on the autism spec- vention and preschool and then services resources at the front end of the educa- options for students in various school set- trum. We have only some of the an- change when the children reach school tional process, research is clear that cer- tings will increase. swers. Furthering our efforts will em- age. Unfortunately the case law that we tain educational methods can effectuate I see the largest challenges for the Au- power us to reach this goal. see in New York State allows school life altering changes. As a learning con- tism community as access to gainful em- districts to use eclectic type methodolo- sultant and an advocate in New Jersey, I ployment, and availability of college- Stephen M. Shore, EdD, gies based on what we believe to be lim- want to make sure the rights of our stu- based programs. As the number of young Executive Director ited proof that these eclectic methodolo- dents and parents are safeguarded. adults diagnosed on the spectrum in- Autism Spectrum Disorder Consulting gies work. We thought the use of eclectic creases. gaining assistance in seeking methodologies would change given the Patricia J. Slager, M.A., SSS, LDT/C meaningful employment and identifying changes made to the IDEA in 2004. Learning Disabilities Specialist and employers who are knowledgeable about There are also limited programs Founder of Educational Resources, Inc. the needs of a person with Autism will available for children with autism in continue to be a challenge. In addition, Long Island. The private programs access to college-based programs for have waiting lists and the good pro- young adults and support services on grams in school districts are filled by campus will be a focus for change. The the district’s own residents. We believe college campus offers many opportunities that all children with autism are entitled for peer-mentoring models, social skill to a free appropriate public education programming, job opportunities and aca- using research based methodolo- demic focus. The challenge ahead is the gies. There is still a great need for ad- establishment of support services on the vocacy to change legislation to require college campus to address scheduling, school districts to use research based time management and choice making methodologies that have been proven to skills specific to the needs of a person work with children with autism. We with Autism. need universities and colleges to pro- vide teacher training to all teachers in Stephanie McCaskill, MS working with autistic children so that Director, Office of Autism we can see more mainstreaming of chil- NYC Department of Education District 75 dren to regular education settings. We need more programs in our public schools so that all children, regardless Valerie Paradiz, PhD of income, receive what should be the Richard H. McCarthy, MD, CM, PhD best education not the ‘floor of opportu- nity’ that is now allowed. To do this we s a designer of educational need to again change laws and make it hile I am a “true believer” in s a parent of autistic twins, I programs, a parent of a teen- clear that children with autism and chil- the usefulness and power of have followed the directions of ager with ASD, and an individ- dren with disabilities need to be edu- medication to bring about numerous professionals and A ual diagnosed with Asperger's cated by trained teachers and staff, that W significant change, the es- A doctors. My sons are now syndrome, I feel one of the most urgent our children are entitled to have educa- sence of the Doctor-Patient interaction re- eleven years old and they continue to needs we have in schools and organiza- tion that is based on methodologies that lies on a relationship. I worry that in our make progress. I have seen also various tions is to train staff and support people in we know work, and that rather than the enthusiasm for biological approaches to professionals in the school system work how they can assist people with autism ‘floor of opportunity’ our children re- treatment, we will overlook the need re- tirelessly to help these boys and I have and Asperger’s syndrome to become bet- ceive an education that allows them to quirement to meet our patients as people. also seen some people torpedo those ef- ter, more effective self advocates. reach their full potential. forts by overwhelming the children and Richard H. McCarthy, MD, CM, PhD the pointing out that these guys cannot Valerie Paradiz, PhD Deborah Berger & Regina Brandow, Esqs. Research Psychiatrist and Member Co-Founder of the Open Center for Autism Berger & Brandow, LLP of the Consult Service, NYSOMH see As a Parent on page 48 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 31

Autism Spectrum News Asked Readers What are the Needs and Challenges Facing the Autism Community?

Debra Machado, LCSW Megann Czekalski, MA, BCABA Jill Harris, PhD Stephanie Hamarman, MD

s a Mental Health profes- research based approach to his is a very exciting time for t is important for parents to have sional and a parent of children the treatment of autism is the world of autism! There is their children vaccinated. We have with neurological disorders, I essential to ensure measurable widespread focus on autism recently had an outbreak of measles A am painfully aware of the A progress utilizing best prac- and the search for causes and in Brooklyn. Vaccinations will help preventI such outbreaks, which can have lack of emphasis on the emotional well- tices. Consumers are bombarded with Tmost effective treatments. We are learn- being of family members - parents and "fad" treatments that lack validated pro- ing more and more about the role of ge- terrible consequences. siblings, of those with Autism Spectrum cedures and outcomes, but promise to netics and possible role of environmental Disorders. Families suffering intense, "cure" autism. Through evaluation of factors. Of course, with autism being a Stephanie Hamarman, MD and chronic emotional stress from all of literature containing scientifically vali- spectrum disorder, there may be multiple American Psychiatric Association Committee the ramifications of having a family dated interventions the individual receiv- causes and multiple effective treatments on Autism & Developmental Disabilities member with ASD contribute to the dif- ing services will be more likely to make for various forms or aspects of autism. Clinical Asst Professor of Psychiatry, ficulties of helping the ASD member progress and be treated ethically. Now With excitement comes confusion and Chief of Psychopharmacology, NNCA themselves. and in the future the Autism Community frustration as well. Although more fund- Taking care of marriages, single par- will be faced with the challenge of ac- ing and attention are being allocated, it ents and siblings needs much more atten- cessing research based services in the feels as though it is never enough. Also, tion in the treatment of ASD, than is cur- natural environment to ensure the gener- there are many “treatments” being publi- rently offered or stressed in the field. The alization of skills learned and to develop cized but not enough careful studies burnout rate is extremely high and family meaningful interpersonal relationships about whether these treatments work. members need their own, professional, that will endure through adulthood. What might appear to be a fun and at- supportive therapy services in order to tractive intervention might actually do maintain the ability to handle the normal Megann Czekalski, MA, BCABA nothing to improve functional skills. situations and experiences that occur Director of Interactive Kids Thus, families may need direction so with having an ASD family member. they don’t waste their time and money with ineffective interventions. Debra Machado, LCSW Who will provide that direction? Cur- rently, there are various agencies, pro- grams, and websites that deal with au- tism. Rather than more agencies or web- sites, we need central clearing houses that can provide the linkages that both families and professionals need to work together to David L. Holmes finally solve the puzzle of autism. he concern of most parents and Jill Harris, PhD professionals, advocating for Director of Psychology appropriate educational ser- Coordinator of Autism Center of Excellence vices and educational benefit Children’s Specialized Hospital Tfor children with autism, is that many special educators and administrators feel that exposure to an education or contain- s a society in which we tend ment during the educational day satisfies to compartmentalize, we must the standard for an appropriate educa- continually strive to serve tion. The simple presence in any educa- A each individual with autism in tional setting, be it regular education or a holistic manner. Inherently the arts special education, without educational Theresa Pirraglia Danielle M. Torre, MS invite us to address the needs of people benefit for the child is a waste of the with autism in a way that acknowledges child's time and potential in life. ne of the greatest challenges s a psychologist working with and integrates the seemingly disparate What must occur for our children with affecting the autism commu- adolescent males with a diag- aspects of the individual. Our everyday autism is an education that confers bene- nity is the wave of individuals nosis of Autism in a residen- challenge in the arts is to find the path- fit; an education that challenges them to who are just entering the adult tial setting, I am fortunate to ways through which each person will not acquire adaptive skills that will serve O A only connect with his creativity but will them well during the adult years. Any- service system. Unfortunately, federal be a part of a wonderful team of profes- and state governments as well as local sionals who work tirelessly to assist in actualize his capacity for self-expression thing less is a waste of their time and service providers are ill prepared to face maximizing their functioning and inde- and interaction. Approaches to arts in- their lives. this new demographic tsunami. pendence. It has been a pleasure to work volvement must uphold the integrity of directly with these residents and their each discipline while making participation Dr. David L. Holmes Theresa Pirraglia Chairman/CEO Parent/Advocate see As a Psychologist on page 48 see As a Society on page 48 Lifespan Services, LLC PAGE 32 AUTISM SPECTRUM NEWS ~ FALL 2008

What are the Needs Statewide Autism Initiative and Challenges Facing the Evolves From Regional Center Autism Community? in Albany, New York

am a clinical psychologist who has By Kristin V. Christodulu, PhD served adults on the autism spec- SUNY Albany trum for 15 years. As I look ahead I have hopes for more research and programI development funds being he Center for Autism and Re- steered toward adult needs. I would like lated Disabilities at the Univer- to see work done to increase supports sity at Albany (CARD Albany) and interventions that will allow adults is a regional resource center Tthat brings research and practice together to enhance their quality of life. This means different things to different peo- in community settings. Since 2002, ple, but most have goals to improve their CARD Albany has been providing evi- satisfaction with their work lives, rela- dence-based training and support to fami- tionships and sense of emotional bal- lies and professionals and, through ongo- ance. Many want to play a more active ing research, has been contributing role in making their own choices about knowledge to the field of autism spectrum their lives, exercising more self- disorders (ASD). determination, instead of having others CARD Albany currently provides edu- speak for them as they make plans for cation/training in the area of autism and the future. The professional community related disabilities as well as technical must develop more programs and inter- assistance/consultation to parents, educa- Kristin V. Christodulu, PhD ventions to meet their needs, and all tors, and community professionals. such endeavors need to be backed by CARD Albany’s highly successful “train- the seven centers provides high quality, data from well-controlled outcome re- Valerie Gaus, PhD the-trainer” model targets skill develop- cost-effective community education and search. Even if this ideal were to be ment in school professionals and capacity technical assistance to families, schools, met, professionally designed efforts will fessionals about their goals and desires, building to empower districts to share and community providers specific to have limited success if adults on the and in some cases, design and run their information and resources. Data indicate ASD. Activities vary across the centers spectrum are not included in the plan- own programs and supports. that our center has had broad and signifi- allowing for region specific capacity ning process. Adults in the autism com- cant impact on increasing knowledge of building that is sustainable. For example, munity need to continually look for ways Valerie Gaus, PhD ASD and evidence-based practices across the Rochester center leverages its re- to voice their perspectives, educate pro- Clinical Psychologist all stakeholder groups. Our research ac- search and treatment resources to engage tivities in the areas of peer modeling, in community-based cross-systems col- teacher and parent training, and sibling laborations to provide a seamless system ot so many years ago, our support, continuously inform our practice of support for individuals with ASD, their knowledge of Autism was in and the broader autism community families and community providers, across the dark ages. Parents were through our various dissemination efforts. the lifespan. The center at Hunter is de- blamed and we knew little In 2007, CARD Albany formed part- veloping a new ASD kindergarten model N nerships with six university-affiliated for the NYC public schools. The center in about how to help the children. Now, we know that Autism is a genetically-based programs across New York State to estab- Westchester provides training on empiri- disorder and that early intensive thera- lish and operate additional Regional Cen- cally-validated interventions to its well- pies can produce dramatic improvements ters for Autism Spectrum Disorders established network of school districts in a child’s ability to communicate and (RCASD). The overarching goal of the and parent groups. The Binghamton cen- to relate. seven centers is to identify, disseminate, ter is providing a range of school support As a medical student, I was taught and assist in the implementation of evi- services. The Queens center is providing that Autism occurred in 5-6 out of 10,000 dence-based practices to build capacity to support to families of children with au- children. Now, through a broader under- improve services and outcomes for chil- tism who also display challenging behav- standing of a spectrum of Autism, we dren and youth with ASD. CARD Albany ior, and the center in Buffalo is conduct- know that number was at least 10 times currently serves as the headquarters for ing workshops on topics specific to au- higher all along. Later in medical school I this statewide network, with partners at tism for school personnel and parents. trained in an evidence-based treatment - the University of Rochester, the Univer- For more information on the NYS Applied Behavioral Analysis (ABA) and sity at Buffalo/Summit Educational Re- Regional Centers for Autism Spectrum worked with a child who blossomed from sources, Inc., SUNY Binghamton, Hunter Disorders, visit us at www.albany.edu/ a silent world of her own to a fully fluent, College-CUNY, Queens College-CUNY, psy/autism. very interactive little girl. I saw the power and New York Medical College/ or a properly delivered, intensive, evi- Westchester Institute for Human Devel- Kristin V. Christodulu, PhD, is with dence-based treatment. opment (WIHD). Using the regional SUNY Albany. Additional contributors to Now researchers are honing in on the Melissa Nishawala, MD model approach, an approach demon- this article include: Caroline I. Magyar, chromosomes involved in causing Autism strated to be a successful paradigm PhD, the University of Rochester, Shirley and testing which environmental, immune grams and services to all of the children around the nation, resources are now Cohen, PhD, Hunter College, David Kuhn, -mediated or other factors may be in- who could benefit so immensely.” available to families and professional in PhD, the Westchester Institute for Human volved in turning on those genes. We areas of NYS that have not had access to Development, and Raymond Romancyzk, already know that earlier intervention is Melissa Nishawala, MD cost-effective services in the past. Each of PhD, SUNY Binghamton. more effective. At the NYU Child Study Assistant Professor of Child and Adolescent Center, we are focusing on making the Psychiatry, Director, Tisch Young diagnosis as early as possible, before a Adult Program, and Clinical Director, child’s second birthday. The next challenge Autism Spectrum Disorders Service, Have an Upcoming Conference or Special Event? will be to provide sufficient therapists, pro- NYU Child Study Center Advertise in Autism Spectrum News

For Our Upcoming See Page 55 for Our Low-Cost Ad Rates Themes and Deadline Calendar And our Release Date Calendar To Be Sure Your Special Event is Advertised See Page 3 Well in Advance of Our Release Date Schedule AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 33 AHA Provides Essential Services to the Autism Community

By Patricia R. Schissel, LMSW on the autism spectrum to become more port line answers upwards of 2500 President of the AHA Association independent. Considered unique among calls per year. Adjunct Professor, Ammon School of conferences, it is attended by families, Education, Adelphi University individuals on the spectrum and profes- • AHA offers free seminars and work- sionals, and features a keynote speaker, shops for member families. panels, and workshops with lectures on sperger Syndrome and High varied topics such as ‘coping with anxi- • AHA’s newsletter, On The Spectrum, Functioning Autism Association ety’, ‘understanding sensory issues’, keeps people informed and connected to (AHA), Inc. began in the spring ‘communication strategies’, and many the high functioning autism community. of 1988 under the auspices of more. In the words of one of the people A • the Department of Child Psychiatry at Stony attending, “So many conferences I go to are Special events like AHA’s annual Brook University. The Association has characterized by people wandering around picnic and bowling programs fill a changed names multiple times as the classi- in isolation between presentations . . .failing need for appropriate social and rec- fications and diagnoses of autism have to make those connections with other atten- reational activities. evolved. After 20 years of volunteers work- dees that seem to characterize this type of ing in bedrooms and basements, AHA has event. You have found the formula - you • AHA’s website is a valuable source of now, in the last two years, set up their first should bottle it and sell it!” reliable scientific information and is vis- offices at The Fay J. Lindner Center for In 2009, the Keynote speaker for the ited by thousands who have an interest in Autism in Bethpage where all of our volun- annual spring conference to be held on Asperger’s Syndrome, High Functioning teers and our small part-time staff work May 9, 2009 will be Temple Grandin. Autism and related conditions. together on our many projects. Each year our fall conference is held at Some of the Services AHA Offers: • AHA’s e-list provides the most current Eastern Suffolk BOCES in Holbrook, news in the field of autism, with special Long Island. Now in its 18th year, it was • AHA now has 10 support groups from attention to up-to-date research. among the first conferences anywhere Patricia R. Schissel, LMSW Montauk to Manhattan. Two of them, a designed to educate educators about high teen group and a group for adults, are Join the AHA e-list by going to the main functioning autism, pervasive develop- Syndrome and a teen panel of ‘experts’. The for individuals on the spectrum. page of the website www.ahaNY.org and mental disorder, Asperger Syndrome and speakers will include Brenda Smith Myles, clicking “JOIN E-LIST” at the top. You will related conditions. This year, on Monday Ph.D., Michelle Garcia Winner, SLP-CCC, • AHA’s two conferences have attained receive news articles, research abstracts and Tuesday, October 27 and 28, it will and Barry Grossman, Ph.D. and Ruth Aspy, national attention with foremost and timely information on autism and the feature speakers on behavior strategies for Ph.D. of the Ziggurat Group. speakers in the field conducting association in your email mailbox every the classroom, understanding language Our annual spring conference held at workshops and making presentations. day. You can email us at [email protected] and communication of students with Adelphi University in Garden City, NY, or call us anytime at (516) 470-0360 for higher functioning autism and Asperger focuses on assisting older teens and adults • AHA’s information telephone sup- assistance.

Do you know a child, teen, or adult who...

• Is socially awkward or isolated?

• Has difficulty making or maintaining friendships?

• Has difficulty with changes in routine?

• Has a problem with give and take in conversation?

• Shows “odd” behaviors and mannerisms?

Looking for information and support?

AHA Association can help! Support meetings, hotline, and informational lectures Bi-annual conferences for professionals, family, and individuals on the autism spectrum Email listserv and member newsletter (516) 470-0360 Asperger Syndrome and High Functioning Autism Association (AHA) Inc. Bethpage, New York Website: www.ahany.org E-mail: [email protected]

AHA Association is a Not-for-Profit Corporation PAGE 34 AUTISM SPECTRUM NEWS ~ FALL 2008 Putnam County ARC Launches Autism Website

Staff Writer Director. “With the numbers of children Autism Spectrum News being diagnosed with autism and thou- sands of people living with autism in New York State alone, we knew it was ith a legacy of 54 years time to have a centralized place for infor- providing exceptional ser- mation, assistance and hope for families vices and extensive pro- and people with Autism.” W grams which offer new and AutismResourceCenter.info went live on exciting initiatives to participants and March 1, 2008 and now offers more than 80 family members, PARC is pleased to an- pages of information about diagnosing au- nounce to development and launch of the tism, warning signs, information for parents region’s first, comprehensive website and educators, where to find help, treat- dedicated to Autism. ments and intervention, regional and na- Putnam County ARC has a new web- tional resources, and much more. site, www.AutismResourceCenter.info, a The website is just the first component one-stop clearinghouse of information of the PARC-sponsored Regional Autism related to Autism Spectrum Disorders Resource Center located at the Mahopac (ASDs), including autism, pervasive de- Public Library in Mahopac, New York. velopmental disabilities (PDD), and As- The library, which is easily accessible to perger’s Syndrome. The autism spectrum residents of Westchester, Putnam and disorders are developmental disabilities Dutchess counties and has an extensive that cause significant impairments in so- inter-library loan system, will be working cial interaction and communication. The with PARC to increase the size of its au- ability of individuals with ASDs to think tism collection, including materials and and learn ranges from gifted to severely books for parents, as well as children and challenged. And rates for those affected people living with autism. In the coming by autism are changing rapidly. Autism months, center staff will work to create now affects 1 in 150 children, and 1 in support groups for parents and caregivers, 100 male children. and an annual, regional conference re- “PARC has always been at the fore- lated to Autism care, advancements, re- front of advocacy and services for people search, information, and more. with all developmental disabilities,” said For more information about the Autism Susan Limongello, PARC’s Executive Resource Center, call 845-278-PARC. AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 35

F●E●G●S and Seaver Center Partnership Provides Excellence in Working with Adults on the Autism Spectrum

By Lee Rambeau, Excellence to establish a direct link be- Senior Vice President of Disabilities tween the latest research findings on as- and Special Needs Services sessment and treatment with “Best Prac- F·E·G·S Health and Human tices” in the field. Services System One current project involves a formal joint fellowship training program, in which a fellow is trained two days a week he explosive growth in the inci- at the Seaver Center and works at dence of autism now affects one F·E·G·S for the rest of the week. At the in every 150 children and gives Seaver Center, the fellow is trained in new impetus to reexamine and assessment procedures in ASD and is in- Timprove the services provided to adults volved in ongoing research. While work- with Autism Spectrum Disorder to help ing at F·E·G·S, the fellow uses her train- them achieve their highest possible qual- ing to provide diagnostic and neurocogni- ity of life. tive assessments, develop and implement Autism is a complex neurobiological evidence-based interventions to increase developmental disorder that starts in independent living in adults with ASD, childhood and is characterized by abnor- and run autism-specific seminars for se- malities in social interactions and commu- lected F·E·G·S professionals. The fellow nication, severely restricted interests, and also trains and supervises clinical staff highly repetitive behavior. It is pervasive and works to identify best practices and in that it affects all aspects of an individ- research programs that align the needs of ual’s life and is a life-long condition. Per- the Agency and the expertise of the Medi- sons with diagnoses on the Autism Spec- cal Center. trum Disorder (ASD) continuum – unlike son’s independence at work, at home and achieve this goal, two areas require more The partnership between F·E·G·S and individuals diagnosed with other intel- in the community. focus: applied research and staff training. the Seaver Center provides opportunities lectual deficits – often have very un- F·E·G·S Health and Human Services The Mount Sinai School of Medicine for integrated research approaches and even needs in areas such as communica- System is a not-for-profit organization (MSSM) Seaver and New York Autism facilitates the translation of research into tion, behavior, socialization, and sen- that serves adults with a wide range of Center of Excellence and many other state-of-the-art clinical practices. One sory integration. emotional, developmental and physical research bodies have conducted well- example is the implementation of visual- Inevitably, students with ASD “age disabilities. Of approximately 2000 indi- documented clinical trials and scientific support structures (e.g. picture-based out” of the educational system. Many are viduals and families that the F·E·G·S De- research on individuals on the spectrum, classroom schedules and leisure sched- successful graduates but all too often velopmental Disabilities Division reaches including the understudied and under- ules) into classrooms for adults with ASD their families face new challenges, barri- annually throughout the Greater New served population of adults with ASDs. – a clinical practice with wide support in ers and obstacles in the world of adult York area, 100 adults diagnosed with F·E·G·S believes that partnerships be- the literature and which maximizes on the services. As interventions for children ASD are engaged in day, residential, tween providers of service and the univer- strengths of many ASD individuals in with ASD change with advances in re- clinical, and family support programs. In sity and research community will lead to visual learning/processing. Visual sup- search and practice, it is incumbent that order to make the necessary improve- more meaningful and targeted advances in ports such as picture activity schedules related changes be studied and imple- ments in service delivery, F·E·G·S be- effective assessment and treatment ap- have been shown to improve independ- mented in the provision of services to lieves that services to adults with ASD proaches for adults on the spectrum. In ence and decrease problem behaviors in adults with ASD. New interventions are must be more specifically tailored to re- 2006, F·E·G·S partnered with the MSSM part of our goal to maximize each per- flect a person-centered approach. To Seaver and New York Autism Center of see Partnership on page 48

Filling the Gaps: Developing Programs for the Lifespan

By Kristen Macaluso, MS increased. One only needs to do an inter- were given another type of diagnosis such who, if they were children today, would and Patricia Grossman, LCSW net search on “autism” and find an endless as mental retardation, attention deficit be diagnosed with an autism spectrum Westchester Jewish Community Services number of websites filled with informa- disorder, depression, impulse control dis- disorder. First and foremost, information tion. Not only are families more savvy in order or an ? Who are and education are key. We must continue terms of awareness of differences in their these adults? Are they the students who to educate school personnel, therapists, he number of children being child, but professionals are more knowl- are able to do well academically but are physicians, first responders and employers diagnosed with autism spectrum edgeable as well. The result is two-fold: completely overwhelmed when trying to on signs, symptoms and unique character- disorders (ASD) has, without a more parents today demand assessments navigate the unfamiliar new social world istics of individuals with autism spectrum doubt, been increasing rapidly of their child at an earlier age and more of college? Are they the individuals who disorders. We must recognize and put Tover the past 20 years. The increase can professionals are adept at recognizing and were able to graduate from a university into place supportive programs that will be attributed to several factors, a few of diagnosing the condition. The DSM-IV but do not have the social aptitude to get provide the necessary anchors for those which make it clear that many children classification of autism has broadened as past an interview and obtain appropriate with autism spectrum disorders through- with autism spectrum disorders went un- well, offering the ability to diagnose au- employment? Can we find them in our out the lifespan. Supportive programs diagnosed in the past. Why is this? Where tism as part of a continuum of severity or judicial system or our jails? Do we find need to be developed that begin during are these individuals now? What can we “spectrum”. By broadening the defini- them unable to access state services for school and continue throughout a stu- do to fill gaps in services to meet the tion, more individuals fit the diagnosis. people with disabilities? Are they at dent’s transition beyond high school. needs of this older population of individu- Additionally, psychologists and medical home being supported by their parents, Social service agencies and schools need als? What do we need to have available doctors have become more aware of the who themselves have not been given ade- to recognize the importance of providing to meet the future needs of children being signs and symptoms of an autistic spec- quate resources to help their children? comfortable, structured, social outlets for diagnosed today with an autism spectrum trum disorder, therefore more readily rec- We are facing a complex problem of these individuals to both meet others who disorder? ognizing and diagnosing the condition. finding ways to support families as they share in their experiences and learn the There are many reasons why more While this addresses the needs of chil- face the challenges of having a child on social skills necessary for successful inte- children today are being diagnosed with dren today, there remain large numbers of the autism spectrum and address the needs gration into the community. autism compared to the number identified adults living and working in the commu- of adults who may have been overlooked Westchester Jewish Community Ser- previously. One factor that has contrib- nity who were misdiagnosed or undiag- as being on the spectrum as youngsters. vices (WJCS) opened an Autism Family uted significantly to the increase is that nosed as children. We face questions re- There are many questions but the most Center (AFC) in December 2006 with our knowledge base of signs and symp- garding the reality of these individuals important one to ask is what can we do to toms of autism spectrum disorders has who are now adults. Could it be that they help this older population of individuals see Lifespan on page 42 PAGE 36 AUTISM SPECTRUM NEWS ~ FALL 2008 Addressing the Needs and Challenges of Latino Children with Autism

By Carmen Inoa Vazquez, PhD, ABPP autism, making it more common than follow the decision-making steps pro- Clinical Professor pediatric cancer, diabetes, and AIDS com- posed by the DSM-IV (Tryon et al., New York University School of Medicine bined. There is still a lot to learn as there 2006). However, most studies use the are many unanswered questions in terms definition that includes several impair- of whether culture and language are im- ments in communication and language, utism spectrum disorders cause portant components in the diagnosis and social interaction, play style and behavior a great deal of pain to families, treatment of these children. providing at least a certain level of consis- individuals with this syndrome Autism spectrum disorders become tency when referring to autism. A and society. However, in the evident in the first three years of life, In terms of language, most children past, research studies focusing on under- manifesting a pattern of problems in so- with autism have delays in the acquisition standing autism were scarce due to a mis- cial interactions, communication, and of both receptive and expressive lan- understanding that autism was rare repetitive behaviors. The disorders of the guage. These specific language delays (Moldin, S.O., Rubenstein, J. L. R. (2006). autism spectrum are defined in different can at times be misunderstood in Latino This has changed within the last two dec- categories. The different definitions listed children living in the United States, when ades due to the many studies focusing on in the Diagnostic and Statistical Manual- their parents or the professionals assessing autism spectrum disorders (ASDs) contrib- IV (DSM-IV) can add confusion and can them assume that what appears as lan- uting to a better understanding of this syn- add to the difficulties experienced by guage delays are only difficulties related drome. Most recently, research efforts many parents and professionals. There to the simultaneous exposure to Spanish have focused on providing answers and are five different disorders under the term and English with uneven reinforcement in resolving the controversies surrounding pervasive developmental disorders the teaching of the two languages. On the environmental contributors such as the (PDDs) which include different levels of other hand, the opposite is also true when mumps-measles-rubella (MMR) vaccine difficulties in functioning. The categories a language acquisition delay that relates to (Phillips M. 2003) as possible causes of of Asperger’s disorder, pervasive devel- autism is minimized and erroneously seen autism. Other environmental causes that opmental disorder not otherwise specified as the result of the simultaneous and un- have been associated with autism such as (PDDNOS), , and child- evenly reinforced exposure to two lan- heavy metals, including lead and mercury, Carmen Inoa Vazquez, PhD, ABPP hood disintegrative disorder (CDD) all guages. Needless to say, exposure to two have prompted epidemiological surveys in fall under the umbrella of PDDs and cre- languages is not detrimental to a child. a number of countries. There are no spe- exposure to heavy metals or vaccines and ate a great deal of ambiguity in the defini- On the contrary, it provides an added cog- cific answers and there are many different autism. The reality is that there is a need tions of the different types of ASD. These nitive component. But as stated, when a opinions and controversies. to conduct more studies that can help to different types of ASD’s could also in- child’s exposure to two different lan- There have been specific controversies provide the professionals and parents of clude Asperger’s syndrome, atypical au- guages in the home and in the school is among those who reject and those who children with autism with clear and useful tism, and high functioning autism (Rutter, not equally reinforced, then the end result accept the proposition indicating that, at information for the treatment of autism 2005; Wing, 2005; Klin, Sparrow, Ma- can often be a delay in both languages. the moment, there is not enough evidence and related disorders since approximately rans, Carter, & Volkmar, 2000). Many to accept a direct connection between one in 150 children is diagnosed with clinicians for example do not regularly see Latino Children on page 46

The Foundation for Educating Children with Autism (914) 941-FECA www.fecainc.org P.O. Box 813 Mount Kisco, NY 10549

The Foundation for Educating Children with Autism, FECA is a non-profit organization located in Westchester County, New York. FECA is dedicated to providing the appropriate educational opportunities for children with autism based on applied behavior analysis, (ABA); through the development of schools, inclusion and vocational programs, consumer advocacy and community outreach.

Debra Machado, LCSW, Psychotherapist In Honor of Joseph Cona Counseling for: Special Needs Children, Alcoholism/Addictions, Separation/Divorce, Family Distress and Relationship Problems ABRAMS, FENSTERMAN, FENSTERMAN, EISMAN, Westbury, New York (516) 333-6626 By Appointment Only GREENBERG, FORMATO & EINIGER, LLP Donna Klein & Associates, Inc. Attorneys at Law Pediatric Occupational and Physical Therapy Services Specializing in Autism Spectrum Disorders 1111 Marcus Avenue - Suite 107 EI, CPSE, and CSE services available. Private services available in your home or Lake Success, New York 11042 in our state of the art clinic.

690 North Broadway Ste GL2 White Plains, N.Y. 10603 (516) 328-2300 (914) 686-3116 x 104 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 37

Adulthood: It’s Closer Than You Think

By Theresa Pirraglia him to be employed? Will it help him behavioral, community integration and Co-Founder and Board Member enjoy life as an active member of his independent living needs. (note: Remem- The Foundation for Educating community? Will these skills help him ber to request that transition assessments Children with Autism (FECA) lead as independent a life as possible? be conducted for your child.) In addition, You may be proud that your child can she helped me navigate the myriad of do long division, but if he can’t inde- transition “to do’s,” such as: applying for t is difficult to think about the future; pendently take care of all his own “self Social Security/Medicaid benefits, regis- when you are just trying to make it help” needs by the time he graduates what tering for the draft, (No exceptions), reg- through each day. In the early have you really accomplished? istering to vote, getting a non-driver iden- 1990’s when my son, Matthew was tification, and enrolling in our state’s firstI diagnosed with autism and for many The Process adult and voca- years later I consistently pushed any tional rehabilitation systems. She also thoughts about his future away. Inevita- Transition is a process that will span advised me to address the issues of bly, the passage of time and the new reali- several years and must begin under fed- guardianship and estate planning and what ties that accompany it have an unrelenting eral law by the time you child turns six- to look for in adult agency for Matthew. way of forcing their way into the present. teen. The general consensus is that it Her knowledge of the adult service sys- So, eight years ago as my son turned should begin by the age of fourteen. tem was priceless. twelve, I literally forced myself to begin Theresa Pirraglia Transition is not a spectator sport. It is There are well over 500 Independent thinking about his adulthood. a team sport, and guess who the captain Living Centers in the United States. In state’s department of education because is? Yes, it’s you. If done correctly it will addition, some adult service providers Where to Begin some states have increased the age limit. require you and, if possible, your child’s have begun to provide the service. One Adult services for individuals with active participation. More than likely you caveat, if you work with a transition con- It is important to realize that all the autism are funded under the Medicaid will be the one informing your school sultant from an adult service provider educational and support services that your system. Medicaid provides only a frac- district of their transition obligations as make sure that they are advocating for the child has received during his or her school tion of the funding that was allocated to per IDEA. Do not be surprised if you will interest of your child, and not as recruiter years have been funded by a federal man- your child under IDEA. So it is vital that also have to do a lot of the leg work when for their agency’s services. date. This mandate is a direct result of the you secure all the educational/vocational it comes to finding and securing the nec- Individuals with Disabilities Education and transition services your child is enti- essary resources for this process. IDEA and Transition Act (IDEA). Unfortunately, this entitle- tled to while they are still in school. In my son’s case I located, requested ment and the funding that accompanies it At any time during your child’s and obtained from my school district the The reauthorization of IDEA in 2004 terminates when your child’s eligibility schooling but especially as he or she ap- services of an outside transition consultant modified and strengthened the provisions for special education ends. That is either proaches adolescence it is a wise to step from our local independent living center for transition services. Below is a brief when he graduates from high school with back and review your child’s educational to help guide me and my son through the overview of the provisions of the act, a regular diploma or until the child program. Remember the “IDEA” clock is process. Over several years, the consult- IDEA and Transition Services 300.320(b): reaches the age of eligibility for a free ticking. Ask yourself: How does my child ant, I and a school district representative appropriate education under state law. In learn? How long does it take him to learn met twice a year to work on the transition Transition services. Beginning not later most states ineligibility expires at the end a new concept or skill? How functional component of his Individual Education than the first IEP to be in effect when the of the school year in which your child will the things he is learning today be to Plan, (IEP). During these meetings we turns 21; but be sure to check with your him when he graduates? Will it enable discussed his educational, prevocational, see Adulthood on page 46

Westchester County Convenes Autism Advisory Committee

By Christine Reinhard, MA, MS and resources, where gaps exist in the and a “bracelet” tracking system to assist Deputy Commissioner current service delivery system and the families whose children wander. The Westchester County Department types of services needed to fill those gaps. Department of Community Mental Health of Community Mental Health The Committee will make recommen- is also revising and expanding their Au- dations to Dr. Grant Mitchell, Commis- tism Website which can be accessed sioner of the Westchester County Depart- through the department’s main website at e have all heard the statis- ment of Community Mental Health, who www.westchestergov.com/mentalhealth. —1 in 150 children will report these recommendations to the Based on national statistics, it is estimated born in the US will be di- County Executive. The Advisory Com- that between 2000 and 6000 children and W agnosed with Autism. But mittee was announced during the West- adults in Westchester County have a diag- it wasn’t until Westchester County Execu- chester County State of the County Ad- nosis on the Autism Spectrum. Currently tive Andrew Spano heard the stories from dress on April 10, 2008. In the address over 800 children in Westchester County families with children of every age on the the County Executive said, “Parents of public schools (aged 5 to 21) have a diag- Autism Spectrum that he realized the im- Autistic Children spend a lifetime of en- nosis on the Spectrum. pact it was having on the citizens of West- ergy and effort, not counting the huge The Autism Advisory Committee has chester County. The stories ranged from emotional and financial toll, trying to find been meeting on a monthly basis since struggling with getting the right diagnosis the right programs, guidance and support April. The Committee was one of several to finding the best therapy or therapist to to help their youngster to be educated and initiatives by the Department of Commu- difficulties with the criminal justice sys- their older child to be independent. Au- nity Mental Health in recognition of April tem for families with adult children on the tism affects not only families, but the as Autism Awareness Month. Other initia- Spectrum. In response to these stories community at large. There must be public tives included a half-day workshop on and the fact that Autism is the fastest understanding and acceptance.” April 10th by Dr. John Pomeroy, a nation- growing developmental disability in the The goals of the Advisory Committee ally known psychiatrist and founder of the United States, County Executive Spano include identifying initiatives that could Cody Center for Autism and Develop- charged the Westchester County Depart- Andrew Spano be acted upon locally and would benefit mental Disabilities at Stony Brook Uni- ment of Community Mental Health to resources and funding mechanisms that those individuals and families in West- versity Medical Center, attended by 200 convene Westchester’s first Autism Advi- would expand and enhance the opportuni- chester County. Some of the areas they family member, providers and educators. sory Committee. The Committee, com- ties for children and adults in Westchester hope to address include an Autism Infor- On April 6th DCMH co-sponsored the prised of parents and advocates, profes- County on the Autism Spectrum and their mation Center to serve as a clearinghouse Second Annual Autism Information Fair sionals and educators knowledgeable and families. They will also assess the exist- to provide information and resources to with Navigating the Spectrum, a parent active in the field of Autism, will assist ing services available to individuals and families throughout their child’s lifespan, advocacy and information organization. the Department of Community Mental families in Westchester County and deter- education and training on Autism to law Health in identifying research, services, mine, based upon current trends, research enforcement and other first responders see Westchester County on page 45 PAGE 38 AUTISM SPECTRUM NEWS ~ FALL 2008

Teaching Social Skills Through Video Modeling

By Jennifer Jacobs, MS, CCC-SLP modeling led to faster acquisition of tasks technology. The same entertainment ap- Social Skill Builder than in vivo modeling and was effective peal that videos hold for mainstream chil- in promoting generalization. dren applies also to autistic children – Video modeling also has been proven only much more so. Since children with ome children with Autism Spec- to decrease certain problem behaviors, autism respond more readily to visual trum Disorders have to cope with including aggression, tantrums and other cues, videos and television have a more considerable deficits in social and off-task activities. powerful effect on them. Videos are more S communication skills. They may motivating and provide more positive have difficulty understanding the expecta- Why Does Video Modeling Work? reinforcement to autistic children. tions of them in certain social situations resulting in inappropriate behaviors. One There are several key characteristics of Video Modeling at Work intervention method that targets social children with autism that favor the use of skills and is often under-utilized is video video modeling over other learning tech- Christopher was 18 months old when modeling – observing appropriate behav- niques. A study entitled “Video Model- his mother, Noreen, noticed that he wasn’t iors on a monitor and, through repetition, ing: Why Does It Work for Children with paying attention and following directions learning to model those behaviors in day- Autism?” (Corbett & Abdullah, 2005) like the other kids. Rather, he seemed lost. to-day, real-life situations. lists these key characteristics: At Christopher’s two-year checkup, The science behind the effectiveness of the pediatrician said that he was develop- video modeling is strong. In numerous • Over-selective attention (making mentally-delayed, but Noreen’s motherly studies, comprising decades of scientific them very prone to distraction) intuition told her that something didn’t research, video modeling has been shown add up. Christopher could effortlessly to be the most effective method for teach- • Restricted field of focus recite the alphabet and count to 20. ing social skills and target behaviors to Unlike other developmentally-delayed children with autism. Jennifer Jacobs, MS, CCC-SLP • Preference for visual stimuli and children, by age two-and-a-half he could visually cued instruction put words together, but didn’t seem to Target Behaviors and Skills Video modeling can teach target be- understand what they meant. Thus began haviors very quickly compared to other • Avoidance of face-to-face interac- a year-and-a-half long odyssey to uncover Research on children with autism has methods, and the behavior is said to be tions ability to process visual infor- the true cause of Christopher’s communi- shown that video modeling can be very effec- "generalized" (i.e., the child is able to mation more readily than verbal in- cation problems. With the help of a pri- tive in improving the following skills and tar- exhibit the behavior in real-life situations formation vate therapist, they found the answer: get behaviors: social interaction behaviors, that are similar to the research scenario). Semantic-Pragmatic Disorder (SPD), a academic and functional skills, communica- In fact, a 2000 study comparing video Because they can be replayed over and little-known syndrome on the high- tion skills, daily living skills, play skills, social modeling with in vivo modeling for teach- over as needed without additional cost, functioning end of the Autism Spectrum. initiations, perception of emotion, spontaneous ing children with autism (Charlop- videos have been in use as a teaching tool requesting and perspective taking. Christy, et al.) suggested that that video almost since the advent of motion picture See Video Modeling on page 43 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 39 Dimensions of Quality: Best For Educating Students with ASD

By Mary Jane Weiss, PhD Brennan, & Fein, 2002; Smith, 1999). From tion?; are there at least 4 instructions deliv- instruction builds responsivity, naturalistic Cecelia McCarton, MD a clinical perspective, it is important to note ered per minute in group instruction?) Re- strategies build initiation. Initiation skills Ivy Feldman, PhD that more research is still needed to com- sults of the analyses indicated that instruc- are critically important for navigating envi- and Jackie Hickey, MS pletely understand the effective elements of tors delivered 6.5 instructions per minute in ronments independently, and for reducing The McCarton Foundation instruction. Furthermore, outcome remains individual instruction, and 4.8 times per the need for instructors to anticipate the highly variable, and reliable predictors of minute in group instruction. Reinforcers learner’s needs. One naturalistic approach outcome have not been clearly identified. were delivered 4.5 times per minute in indi- is incidental teaching, in which the learner earners with autism spectrum vidual instruction, and 3.1 times per minute initiates a request or a conversation about a disorders have diverse and unique Quality Indicators in group instruction. All of these numbers particular item or topic. The teacher needs. They struggle with atten- fall within the indicators of high quality prompts an elaboration of that initiation, tion, communication, cognitive One of the central issues for both par- instruction, and reflect intensive program- and the learner’s more elaborate communi- delays,L and behavioral control. Their ming and high rates of student engagement. ents and professionals is the identification cation results in immediate access to the learning and behavioral challenges are of quality indicators of programs serving Other indicators of quality programs desired item (Fenske, Krantz, & McClan- highly idiosyncratic, and each learner re- individuals with autism. Parents seek in- involve aspects of program organization, nahan, 2001). One of the most important quires a fully individualized intensive and formation on this as they seek to locate environmental set-up, or classroom man- aspects is that the learner is leading the comprehensive educational program. appropriate programs that will maximize agement. These variables include ensuring teaching interaction, as his or her interests The most effective intervention for learn- their child’s skills. Professionals seek to staff readiness for instruction and involving create the opportunity for the instruction ers with ASD’s is Applied Behavior Analy- identify these variables to develop, refine, the learner in decisions about the sequence (Fenske, Krantz, & McClannahan, 2001). sis, which has been documented to be ex- and improve their educational services. or types of activities selected. Data were Incidental teaching is an excellent way to tremely effective in building a wide variety Most programs utilizing ABA focus on collected on several aspects of these ante- increase initiation and spontaneity. of skills. ABA intervention uses empirically using a combination of formal and naturalis- cedent/preventive strategies to assess Other naturalistic methodologies within validated instructional strategies, develops tic strategies. Discrete trial instruction has whether the environment was maximally ABA have also emphasized the themes of precise educational goals, and uses ongoing been effective in teaching a wide variety of conducive to learning. Data were collected initiation and learner interests. Pivotal Re- collection of data to monitor student pro- core skills in a structured, formalized con- in 16 observations, across 8 learners and 10 sponse Training (PRT) and Natural Lan- gress and make data-based decisions. ABA text. Elements of its effective use include staff members, and indicated that staff guage Paradigm (NLP) emphasize using high intervention has been criticized as teaching errorless learning procedures (e.g., Etzel & members were maximally prepared for interest and motivating materials, teaching in students in a robotic fashion, but it is actu- LeBlanc, 1979; Lancioni & Smeets, 1986; instruction 97% of the time, and that natural situations, and capitalizing on the child’s ally a dynamic and flexible educational Terrace, 1963; Touchette & Howard, 1984) choices were provided to students in 96% interests to target deficits in language (Koegel & programming approach, enabling the prac- and task variation and interspersal (e.g., of potential opportunities. These data indi- Koegel, 2005; Koegel, Koegel, & Surrat, 1992; titioner to not only develop carefully con- Dunlap, 1984; Mace, Hock, Lalli, West, cate good use of strategies associated with Koegel, O’Dell, & Koegel, 1987; Laski, Char- structed incremental programs for skill Belfiore, Pinter, & Brown, 1988; Winter- lower levels of challenging behaviors. lop, & Schreibman, 1988). Natural Environ- acquisition, but also to assess the functions ling, Dunlap, & O’Neill, 1987; Zarcone, In addition to maximizing formal instruc- ment Training (NET; Sundberg & Partington, of challenging behaviors and develop be- Iwata, Hughes, & Vollmer, 1993). In addi- tion and ensuring an optimal environment, 1998), like NLP and PRT, focuses on the use of havior intervention plans matched to func- tion, discrete trial teaching is much more there is also a need for naturalistic instruc- tion, analyze and program the generaliza- effective if utilized with strategies for ef- tion. While the formality of discrete trial see Dimensions on page 50 tion of skills to the natural environment. fective generalization to the natural envi- A combination of discrete trial instruc- ronment (Smith, McAdam, & Napolitano, tion and naturalistic instructional approaches 2007; Stokes & Baer, 1977). Strategies is used to build skills across all curricular that facilitate transfer to the natural envi- areas. There is generally a strong focus on ronment include the use of varied phrases providing reinforcement to build behav- in instruction and the use of a naturalistic iors, on prompting to facilitate skill acqui- tone of voice in delivering instructions. sition, and on assessing the transfer of Other elements of effective instruction skills. Quality ABA programs focus on within formal discrete trials include atten- providing a high number of learning oppor- tion to pacing of instruction and to the pro- tunities and on capitalizing on naturally vision of frequent and motivating rewards. occurring opportunities for instruction. In pacing, the goal is to maximize the num- Many programs that utilize ABA also ber of opportunities there are for the student incorporate interventions from other disci- to learn in an instructional session. Fast- plines, such as speech and occupational paced instruction increases learning oppor- therapy to address communication and tunities, increases access to reinforcers, en- The McCarton Foundation is dedicated sensory issues. ABA can be used in com- sures high rates of engagement, and pre- bination with these approaches to assist vents inappropriate and off-task behaviors. to increasing the educational opportunities for children practitioners first in gaining behavioral Even when formal instruction is delivered in with autism and ASD and making a better life control so they can institute their interven- groups, it is important to attend to the pace tions more effectively. ABA can also be of instruction, as faster pace facilitates atten- for them and their families. helpful in refining interventions by devel- tion, engagement, and appropriate behavior. oping operationally defined targets, in stan- Programs utilizing ABA are committed Please Look Out for Details on Our 2009 Events dardizing some interventions within these to taking data, not just for accountability, approaches to assist in tracking progress, but for quality control and for decision- and in evaluating the impact of these meth- making purposes. From a quality control Parent & Caregiver Workshops: ods for particular learners. perspective, the collection of data provides information on the integrity of treatment Structuring Leisure Time Outcome of ABA (i.e., is treatment being implemented as designed?) For decision-making, data is and As mentioned above, there is a substan- collected and reviewed and analyzed on a Evaluating the Effects of Alternative Treatments tial data base on outcome with behavior daily basis to provide information on rate analytic intervention. Lovaas (1987) com- of acquisition, error patterns, the need for For more information please contact: pared a group of children under age 4 who additional prompts, and recommendations received 40 hours of intervention per week to alterations in treatment. Harvey Weissman for 2 or more years with groups of children Data were collected across a wide variety who received fewer hours of intervention. of learners and teachers in our school (15 (646) 277-5422 Almost half of the children in the intensive learners, 12 staff members). The data allow intervention group were able to be placed for the evaluation of treatment integrity [email protected] unassisted in regular education classes and along some critical dimensions (e.g., are achieved IQ’s in the average range. Other there at least 5 instructions delivered per The McCarton Foundation researchers have replicated that early inten- minute in intensive individualized instruc- nd sive behavioral intervention results in sig- tion? ; are at least 4 reinforcers delivered per 350 East 82 Street, New York, New York 10028 nificant gains for some children (e.g., Green, minute in intensive individualized instruc- PAGE 40 AUTISM SPECTRUM NEWS ~ FALL 2008

Seaver Center from page 11 latory T cells. Recent results of clinical trials with TSO show extremely positive clinical trials in psychopharmacological results in patients with inflammatory interventions as part of the NIH STAART bowel disease and several anecdotal re- Centers Program, including trials of ports describe dramatic responses in indi- fluoxetine and citalopram. We have cre- viduals with ASD. Our group remains ated the Clinical Trials Network (CTN) eager to explore the potential of TSO to funded by Autism Speaks with the mis- ameliorate behavioral symptoms of autism. sion of bridging the gap between new For more information about any of our discoveries at the basic science level and treatment studies, please contact Jessica large clinical trials. Our efforts have led Kiarashi ([email protected]) at to an Orphan Indication/Investigational 212-241-7098. New Drug application for the production of fluoxetine to treat repetitive behaviors, The Laboratory of Molecular Neuro- now being studied by the CTN. Other psychiatry is under the direction of Dr. studies at the Center also suggest that Joseph Buxbaum who has been studying divalproex sodium may be well tolerated the genetics of ASD, including autism, and effective for the treatment of core Asperger syndrome, PDD-NOS, and Rett symptom domains in autism (Hollander et syndrome, for over 10 years. Currently, al, 2005). We remain extremely commit- the laboratory carries out genetic analy- ted to investigating best practices in the ses, identifying known and novel genetic treatment of autism, and are currently causes for ASD in patient samples, and participating in several national, multi- also makes use of mouse model systems center clinical trials of medications, in- to evaluate the mechanisms by which cluding fluoxetine, in addition to explor- genetic variants can cause ASD as well as ing the use of memantine, a novel gluta- to evaluate potential therapies. matergic agent, to treat language, atten- The rationale for genetic analyses in tion, motor planning, and memory in ASD is several-fold. First, there is com- ASD. pelling evidence for a large, albeit com- Most recently, our efforts have grown plex, contribution of genetics to ASD. to focus on a novel and innovative agent, Second, in some cases, by identifying oxytocin. Oxytocin is a nine-amino-acid genetic causes for ASD, there can be im- peptide which is synthesized in the hypo- mediate benefits to the families, including thalamus and released into the blood- awareness of recurrence risk and potential stream from the posterior pituitary. In medical conditions to be aware of. In addition to its release in systemic circula- very rare instances, experimental thera- tion, oxytocin is widely distributed peutics are available to individuals with throughout the central nervous system. It specific genetic causes of ASD. Third, is well known for its peripheral effects on knowing genetic causes can lead to func- facilitating uterine contractions during tional studies in experimental systems, parturition and milk let-down. However, including animal models, which can be oxytocin also plays an important role in used to develop and evaluate therapeutics. social attachment and affiliative behav- The Laboratory of Molecular Neuro- iors, including sexual behavior, mother- psychiatry has taken advantage of the infant and adult-adult pair-bond forma- evolving methods of genetic analyses to tion, and separation distress. Moreover, look at genes that increase risk for ASD oxytocin plays a role in repetitive behav- (susceptibility genes) as well as gene mu- iors and stress reactivity. Investigators in tations and chromosomal abnormalities our Center have found that synthetic oxy- that are causal for ASD. We have identi- tocin administered via intravenous infu- fied causes of ASD in individuals, includ- sion to adults with ASD produced signifi- ing mutations that are causal for ASD cant reductions in repetitive behaviors (e.g., mutations in the PTEN gene), and and facilitated social cognition/memory chromosomal abnormalities that are (Hollander et al, 2003). We are currently causal for ASD (e.g., duplications in conducting an important study examining 15q11-13 and 22q11). We have also the effect of intranasal oxytocin on repeti- identified risk factors for ASD, including tive behaviors and social functioning in single nucleotide polymorphisms that adults with ASD. increase risk (e.g., the SLC25A12 and Another exciting direction of research STK39 genes) and chromosomal changes involves the association between autism that increase risk, including duplications and immune dysfunction. There is a sig- in the regions of the X-chromosome. nificant body of literature linking central With these various causal and suscepti- nervous system dysfunction in autism to bility loci for ASD, we are now able to neuroinflammation and several studies create mouse model systems that have report increased levels of proinflamma- alterations in these loci and these mice can Dr. Klin from page 26 cal samples. This work began with tory cytokines in individuals with ASD. be studied for their neurodevelopment and studies of adolescents and adults with The study of Helminth worms for the behavior. We have implemented a large spectrum disorders. These include stud- autism, and it now involves toddlers treatment of autoimmune disorders battery of behavioral and neuoroanatomi- ies of looking at and thinking about and school-age children with autism. emerged in part from the observation that cal tests and the mice we have character- others. In the past few years, this line of These techniques are also being used to reduced exposure to infectious agents in ized to date show deficits in social com- research has focused on the use of eye- study the development of social visual industrialized countries has led to the rise munication, social memory, and learning, tracking technology to visualize and engagement in infants followed pro- in allergic and autoimmune diseases. as well as other deficits. Ultimately these quantify visual engagement with the spectively from birth. The goal of this Stimulation of the immune system by mice will represent important model sys- social world. Research paradigms in- line of research is to devise techniques microbes may therefore be protective tems to evaluate therapeutics. clude free-viewing of dynamic, sponta- for the detection of vulnerabilities for against the development of inflammatory For more information about genetic neous social stimuli such as complex autism in the first months of life. Other diseases. As a result, porcine whipworm studies, please contact Danielle Zurawiecki social interactions or infant-directed lines of research include the co- Trichuris Suis Ova (TSO) has been stud- ([email protected]) at 212- approaches of caregivers. Novel data registration of eye-tracking and func- ied extensively as a potential treatment 659-8767. analytic techniques were developed to tional magnetic resonance imaging data for Crohn’s disease and ulcerative colitis, quantify visual fixation patterns of and of eye-tracking and electrophysio- among other autoimmune diseases. TSO The Family Studies Research Program groups of viewers, and to statistically logical data, and the utility of eye- regulates immune function by inducing is under the direction of Dr. Jeremy compare the patterns of individuals or tracking measures of social engagement the host to selectively produce Th2 cyto- Silverman and conducts a wide range of groups of viewers relative to normative as outcome measures for psychopharma- kines while blocking Th1 cytokine proin- visual scanning data obtained for typi- cological and other treatment studies. flammatory responses and inducing regu- see Seaver Center on page 47 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 41 PAGE 42 AUTISM SPECTRUM NEWS ~ FALL 2008

see Lifespan on page 35 others who share their difficulties with For many of the groups’ members, Recognizing that there are many adults initiating conversations, understanding this is the first time they have connected today who went undiagnosed and un- funding from UJA-Federation of New York. social cues, maintaining employment and with someone else who is “like them.” treated, WJCS’ Autism Family Center The AFC is a community of families ultimately socializing. These individuals They can share feelings with someone offers original programs to help adults (parents, grandparents, extended family, now have the opportunity, which they did who understands and meet others with with autism spectrum disorders build spouses and siblings) living with or affected not have in the past, to enjoy breakfast or the same diagnosis. It is the first time upon their strengths, improve communica- by an individual(s) with an autism spectrum dinner while connecting with others and they are talking about what it is like to tion and develop connections with others. disorder who join together on a formal and developing social skills. feel as if you are an outsider wanting to Just as programs are being developed for informal basis to build emotional and social Both of these newly developed groups be let in. They share stories about being children diagnosed with an autism spec- supports as they face the challenges of au- filled up quickly after local schools, agen- the target of many jokes growing up or trum disorder, attention needs to be given tism. Additionally the AFC serves as a cen- cies, therapists, and families were informed feeling like their parents always viewed to forming opportunities for adults diag- tralized information and referral resource. about the program. The Breakfast Club them as failures. They discuss the nosed with the disorder who have had Through our work of compiling information meets monthly and is made up of older “what ifs.” “What if my parents found very little support in their formative years. about resources available in Westchester adults with Asperger’s. Group members out sooner? Maybe I would be better The WJCS Autism Family Center recog- County for individuals with autism, it be- struggle with building friendships, forming off.” “Maybe if my parents knew more nizes this gap and is working with the com- came apparent that gaps in services existed, romantic relationships and finding appropri- about Asperger’s they would’ve under- munity to create more programs, like the particularly for adults. As a result of identi- ate employment. The participants also want stood why things were so hard for me.” Breakfast and Supper Clubs that meet the fying a lack of services for adults with As- to learn more about what it means to have Because of the Breakfast and Supper needs of this unique and underserved popu- perger’s or high functioning autism, two Asperger’s syndrome. The young adult Clubs, they are no longer alone in their lation. There is much work to be done. programs were developed. Supper Club meets monthly as well, whose thoughts and in their worlds. Friend- Kristen Macaluso, MS is Program The Breakfast and Supper Clubs, members experience many difficulties tran- ships have begun to form and, at a mini- Coordinator of the WJCS Autism Family funded by the Daniel Jordan Fiddle Foun- sitioning into college or employment. Like mum, they each know that once every Center, and Patricia Grossman, LCSW is dation and the Elaine Gorbach Levine the older adults, they also long for the inti- month they have a place to come where the Program Director of the WJCS Out Charitable Foundation, offer adults a wel- mate relationships in which typical peers they are not an outsider and are always Patient Services for the Developmentally coming environment where they can meet their age are involved. free to be themselves. Disabled.

A Path from page 25 than the look where we've been. Autism is support group and resource center at revo- ‘pioneering’, as therapists utilized behav- so consuming, for parents, children, fam- lutionhealth.com/advocacy/robin-morris. ioral interventions nearly twenty years Slowly and deliberately, he typed a short ily and friends. It does not matter how Her article was reprinted with permission ago. Robin's expertise as a mother living note on the computer. This was equivalent significant the impairment; our personal from the Philadelphia Inquirer. a life with autism, has incurred a plethora to volumes in our eyes. One day Paul re- pain is not measured by degrees. of phone calls with quests for information ceived a call from Lurie's office asking Our struggle with autism continues, Robin H. Morris Biography about her choices for treatment and inter- how many tickets he would like to attend but Paul has employed his enthusiasm for vention. the 2004 draft. What generosity of spirit the NFL draft and used that skill to con- Robin H. Morris received her BS de- Robin's efforts to elevate awareness and thoughtful consideration! Jeff Lurie verse with others. Following the 2004 gree in Secondary Education from Bos- and discover scientific information in the simply knows. draft, he e-mailed Shoop at Columbia and ton University. She majored in English, field of autism, prompted her to join And so, on that Saturday, Paul, accom- forwarded statistics about one of our high with a minor in theater. She taught on the NAAR (National Alliance for Autism panied by his father and brother, walked school players. The senior was then called high school level for two years, but fol- Research) in 2002. Her son's team down the bleachers at Madison Square for an interview. Go figure! lowed the ‘roar of the greasepaint’ to “Paulie’s Promise” raised several thou- Garden, and sat surrounded by broad- Most compelling for his family is that pursue her passion for theatre and per- sand dollars for the premier Walk Far for caster Chris Berman and Bob Shoop, then Paul has learned that he can be flexible. In forming arts. She appeared in various NAAR in her area. NAAR merged with football coach of Columbia University. subsequent years, he has watched the NFL television commercials and daytime soap AUTISM SPEAKS in 2006 in efforts to The exhilaration for Paul was electrifying, draft on TV and been able to report to us operas, while performing in Off Broad- galvanize the global efforts to cure au- and we silently planned to tackle new his passion with the usual gusto. That is way productions. tism, while raising consciousness about vistas. That day, our boy transcended the Paul's plan for Saturday. For parents, how Mrs. Morris’s greatest production the debilitating effects of this disease. pitfalls of autism. He socialized, frater- sweet that is! occurred in 1987 when she and her hus- Mrs. Morris credits the power of her nized, verbalized and clearly triumphed in band became proud parents of quadru- ‘survivor skills’ fueled by the support of the day. That Saturday cemented another Robin H. Morris is a patient advocate for plets, three boys and one girl. The de- her husband Daniel, and all of her chil- kind of hero: Paul. Revolution Health at revolutionhealth.com/ mands of premature infants paled in dren, as the family tackles autism as a Time provides a unique perspective in advocacy/robin-morris. E-mail her at RHAdvo- comparison to the shock and devastation formidable adversary. She continues to separating the forest from the trees. Some- [email protected]. Please visit that one of the boys was diagnosed as attend seminars and lectures given by times, when we live in a world of chaos, Robin’s blog at www.revolutionhealth.com/ autistic. prominent specialists in the arena of au- we are totally immersed in the now, rather blogs/resilientmom, and the Revolution Health Her son’s treatment was viewed as tism research.

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Judith Omidvaran from page 27 of America (ASA), the Attention Deficit adult living at home or away from home there are no mandated services to serve Hyperactivity Disorder Association, with Aspergers/HFA, and to begin plan- them. Because of this, most autistic adults developmental disabilities, and mental NARSAD, NYSACRA, LADDERS, the ning to provide a secure future for their and their families have an extremely diffi- illness. Since autism is comprised of a Cody Autism Center and many others autistic adult child. We invite a variety cult time due to the severe lack of services complex of various types of disorders, I too numerous to list. I also gained a of speakers to our monthly meetings, specifically designed for adults with au- studied about many other types of disor- great deal of knowledge by reading many of whom are professionals with tism. These autistic adults need a service ders which either share core symptoms Mental Health News, from the same expertise in subjects that address the delivery system that meets their special of autism or are disorders that can have organization now bringing you Autism concerns of our group members. needs in the areas of Employment, Mental autistic traits. A few of these psychiatric Spectrum News. I currently serve on the Westchester Health, Housing, Recreation, Social Ser- and developmental disorders are Fragile My dear friend Bonnie Kaplan and I County Department of Mental Health’s vices and the Criminal Justice System X Syndrome, Obsessive Compulsive established a support group to address Advisory Committee on Autism and also which often encounters individuals with disorders, Anxiety disorders, Attention the needs of families with adult children on the department’s MR/DD Subcommit- Asperger’s Syndrome/High Functioning Deficit Disorders, Impulse Disorders, with Asperger’s Syndrome and High tee. I also serve as a Science Ambassador Autism and treats them harshly and un- Schizophrenia, Bi-Polar disorders and Functioning Autism. Ours is the only for the Autism Tissue Program (ATP) an justly due to their lack of understanding many others. Some of the organizations group in the Hudson Valley, NY region initiative of Autism Speaks. In this capac- adults with autism. I became affiliated with advocate for assisting families, to assist families in ity, I will be promoting organ and tissue I am deeply honored that Ira and individuals with autism, developmental learning about services related to em- donation to increase scientific projects David Minot have invited me to serve disabilities, mental health disorders and ployment, supported living, socializa- related to autism research in order to find on the Editorial Board of Autism Spec- social services They include: NAAR tion/recreation, special needs estate the causes and treatments for this devas- trum News, and want to thank them for and CAN (which merged with Autism planning, guardianship, medical treat- tating disorder. their tireless efforts in bringing Autism Speaks), the National Alliance for the ments, medical research, behavior My most important challenge now is to Spectrum News to the community. It is a Dually Diagnosed (NADD), the Asper- modification, etc. We do this to em- advocate for services for adults with au- unique and beneficial publication which ger’s Association of New England power caregivers to better cope with the tism. After an autistic individual leaves I hope has continued growth and suc- (AANE), ASPEN, the Autism Society myriad of problems in caring for an school (usually around the age of 21) cess in the years to come. AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 43

Educating Children from page 17 got worse with it than without. Group an intervention across individuals, ties, which is par-for-the-course in oc- designs to empirically-validate a treat- across settings, or across different cupational therapy, but does not have general education, where the intention is ment do not give you information about behaviors. research support as an effective inter- to treat as many students as possible with how any one individual will respond. vention for autism (NYSDOH, 1999). I the same instruction, and get the largest Single-case design research, however, With decades of single-case design have conducted single-case research number of those students graduating. The does provide a methodology for evaluating research behind it, components of ABA designs with individuals in the school drawbacks of large group research designs instructional practices, behavior interven- (like FCT mentioned above) have for whom sensory activities are recom- (in general and for autism in particular), is tions, or other medical or environmental emerged as the only empirically-validated mended by an occupational therapist to that you cannot predict how any one indi- modifications that may impact on the educa- interventions for individuals with autism. improve reduce impulsivity and distrac- vidual will respond to treatment when you tion and outcome of a student with autism. As such, insurance companies are increas- tion. I have been able to demonstrate are looking at averages. These research designs allow the evaluation ingly by required to take ABA services for a few individuals, that these sensory To make this a concrete example, let’s of the effectiveness of an intervention for seriously as interventions to address com- activities can be provided contingently say we have five individuals who score a one specific individual, and some common munication, social, and behavioral deficits as effective reinforcers to increase at- “20” on some test pre-treatment. The ones are described briefly below (Barlow, in autism. Schools that support students tention to task. average pre-test score would then be Hayes & Nelson, 1984)): with autism, whether public or self- Again, it would benefit autism services (20+20+20+20+20)/5 * 100 = 20. Let’s contained, should be required to demon- if there was a greater emphasis placed on then say that post-treatment, that four of • Reversal design: This research design strate that services provided are resulting the use of evidence-based practices in the individuals increase their score to a involves taking data while systemati- in improved outcomes. These students education. First, we could truly determine 30, and one individual decreases their cally providing and withdrawing an already have individualized education those strategies that will help an individ- score to a 5, making the post-treatment intervention, to see if the rate of be- plans that list services to be provided and ual reach their goals and improve their average (30+30+30+30+5)/5 * 100= 25. havior changes as a function of the goals to be addressed. Measures of the lives in the community. Second, it would There are more complex statistical analy- intervention. empirical basis of a service and account- add some accountability to education that ses for this, but for sake of argument, ability for outcomes should be standard is not based on inappropriate standardized since an average score of 25 post- • Alternating treatments: This research practice. ABA provides a methodology to tests or teacher-created portfolios of stu- treatment is higher than an average score design allows you to compare two (or do this, even for interventions that are not dent work. Third, it would assist in le- of 20 pre-treatment, a group research de- more) interventions provided in alter- based on those same principles. gitimizing services that are provided in sign would determine this was an effec- nating sessions within the same time As an example, students with autism schools as necessary for some students tive intervention. How would you feel period. routinely receive occupational therapy with autism and would allow a mecha- though, if you were the individual whose as a service on their individual educa- nism for families to obtain those ser- score decreased to five? This is not an • Multiple baseline: This research de- tion plans in New York. These services vices when the school can or does not intervention that you would want, as you sign allows you to evaluate effects of can include “sensory integration” activi- provide it.

Video Modeling from page 38 Noreen would whisper in his ear, “Put on life children are presented in real-life situa- -The-Rosie, he’s able to imitate the situa- your happy face.” And when he was an- tions – in the park, in a play group, at pre- tion with other kids later on.” According to the National Autistic Soci- gry with her but didn’t know how to ex- school and on an outing. Playing the game, Since starting therapy, Christopher has ety, features of SPD include delayed lan- press it, she’d coach, “now it’s time for Christopher was asked to identify correct made incredible progress. “It’s like night guage development, learning to talk by your mad face.” behavior related to social interactions such and day,” says Noreen. memorizing phrases instead of putting Christopher’s therapist also recom- as taking turns, sharing, apologizing, coop- Jennifer Jacobs, M.S. CCC-SLP, is co- words together freely, problems understand- mended video modeling and pointed them erating, maintaining personal space and founder of Social Skill Builder ing questions, and difficulty following con- towards a CD-ROM from Social Skill listening. (www.SocialSkillBuilder.com), a company versations. Children with this disorder have Builder (www.socialskillbuilder.com), a “Greetings, and how to act when play- launched in 1999 to provide computer- trouble comprehending the meaning of what company that provides interactive learning ing traditional games like Duck-Duck- based tools for teaching social skills to other people say and cannot use speech ap- tools for teaching social skills to children Goose, do not come naturally to Christo- children affected by Autism Spectrum propriately themselves. affected by Autism Spectrum Disorders and pher, but he doesn’t like me to explain Disorder (ASD). Jennifer, along with her Now that Noreen had pinpointed the other language/learning difficulties. Video these things to him,” says Noreen. “Using sister and co-founder Laurie, developed issue, Christopher’s parents and grandpar- modeling is the basis for their instructional, Preschool Playtime, we’re able to take the software line when she recognized a ents got to work helping Christopher yet child-friendly, programs. advantage of the fact that he’s a really deficit in quality products for children where he needed it most – socialization The CD-ROM, Preschool Playtime, was visual child. When he watches a child in and adolescents with social competence and appropriate communication. When a good fit for Christopher. It offers five lev- the program stop over at a friend’s house issues. Contact Jennifer at Jenni- Christopher was about to receive a gift, els of role-playing exercises in which real- to say hi, or a group playing Ring-Around [email protected].

Early Detection from page 13 on the autism spectrum and their families. • Sit up by themselves. “Don’t wait,” adds Michelle Leder- According to the Centers for Disease man. “Do not wait. It does not take any- string on the rug, it might be a red flag.” Control and Prevention: • Bang objects together. thing away from you to have your child Carol advises parents to watch for cer- evaluated immediately. The sooner your tain behaviors that can vary with each Developmental Milestones for a • Respond to simple verbal requests. child begins receiving services, the bet- child’s development: By about six Typically Developing Three-month-old ter.” months, babies should have big smiles Marni Goltsman and her husband say Today, Michelle is thrilled to see and be able to express warmth and joy; by • Smiling at caretakers and loved ones. that they “weren’t super concerned” James developing language skills. “He

around nine months, they should be able • when their 18-month-old son Shafer now has more words than I can count to engage in reciprocity of sounds, smiles Lifting his or her head when lying on still wasn’t talking or playing with other and he just started putting two words the belly. and other facial expressions; by approxi- children. A pediatric neurologist evalu- together,” she said. mately 12 months, they should be bab- • Gazing intently at faces. ated Shafer and diagnosed him with a But she can’t help but wonder what bling; and by about 16-18 months, they pervasive developmental disorder. “We progress James might have made if he should be able to form at least some words. • Smiling at the sound of familiar voices. didn’t even know what pervasive devel- had received intensive therapies sooner. And anytime there is a loss of speech opmental disorder was,” Marni recalled. “I’m now at a place where I balance or social skills, parents are advised to con- Developmental Milestones for a The doctor recommended 20-25 reality with optimism. The reality is this sult a pediatrician or developmental pe- Typically Developing Seven-month-old hours a week of early intervention ser- is not a six-month or one-year thing; diatrician for an evaluation. vices, including speech, occupational he’ll need years of therapy and support, • Enjoying social play. “The good news is that early interven- and physical therapies. but that won’t prevent him from having tion is here,” Carol said. “We didn’t have • Transferring objects from hand to hand. “A part of me was comforted that we a full and happy life.” it 30 years ago. If there’s a delay it gives were finally going to get some help,” the child a good start on the right path to • The ability to follow moving objects she said. Bernadette Flynn, EdD, is Director learning how to communicate and interact with his or her eyes. Today, Shafer is 5 and doing ex- of the New York League for Early appropriately.” tremely well, thanks in part to the inten- Learning, a member of the YAI/National • Responding to his or her name. Cultural factors and language barriers sive early intervention he began receiv- Institute for People with Disabilities can also hinder early identification of an • Finding partially hidden objects. De- ing before he was 2. Network. For more information on autism spectrum disorder. The shame that velopmental milestones for a typically “My advice to parents is to get their evaluations and services for children some cultures still associate with disabil- developing one-year-old children evaluated,” Marni said. and adults with autism spectrum disor- ity and a lack of information and services “There’s no downside. If it’s nothing, it’s ders, please contact YAI LINK at 1-866- in non-English languages often create fur- • Enjoy initiating play with peers and nothing; but if it’s something, it makes 2-YAI-LINK; TDD: 212-290-2787, ther barriers for first-generation Americans family members. tremendous difference to get help early.” [email protected] or visit www.yai.org. PAGE 44 AUTISM SPECTRUM NEWS ~ FALL 2008

The Cody Center from page 24 workshops and community lectures in top- graduate courses for special education treated with anti-depressant therapies (Dr. ics related to special education services, teachers and other professionals in Au- Grigori Enikolopov), the study of addi- Clinical Services behavioral programs, guardianship, autism tism, behavioral methods, and other topics tional psychiatric disorders in ASD with research and other topics. The Center also as part of the MALS (Master of Arts in preliminary findings suggesting that bio- In the last 12 months, the Center has specializes in services for young persons Liberal Studies). The masters level logic genetic markers might confirm true served over 1400 individuals or families transitioning to adulthood including short- coursework series leading to the creden- comorbidity (Dr. Ken Gadow), and meas- and provided over 4500 clinic visits. 30 term care coordination, assistance with tial of Board Certified Behavior Analyst urement of brain metabolic profiles that percent of clients are adults. Approxi- applications for OMRDD and other adult (BCBA) is also offered by the Cody Cen- may differentiate between ASD clinical mately 75 percent have ASD and 25 per- services, and providing workshops for par- ter. The Cody Center offers internships subtypes and can provide a non-invasive cent have other developmental disabili- ents in transition planning. and residency rotations for health sciences measure to study stem cells in the brain ties. The Center provides comprehensive Two programs address college based and other graduate students. (Dr. Mirjana Savatic). More details and multi-disciplinary diagnostic evaluations education and training programs. The first consideration of research issues at the for children and adults; psychiatric treat- is a summer orientation program within a Research center could be a feature of future issues ment, including medication management; local community college to prepare more of this publication. individual, family and group psychother- able high school students with ASD for The consortium is engaged in multidis- The Cody Center is a division of the apy; neuropsychological testing; educa- the expectations of college education. The ciplinary clinical, basic and translational Department of Pediatrics at Stony Brook tional assessments; and specialty consul- second program will start this year and research currently focused on the genetics University Medical Center and is the only tations in genetics, developmental pediat- will provide support services for individu- of autism, MRI mapping and MRSpectro- multi-disciplinary Center of Excellence rics, and child neurology. The center also als with ASD or developmental disability scoopy of the brain, brain cell biological for Autism and Developmental Disabili- runs a State sponsored sex education and to attend college based vocational training studies, and studies of psychiatric condi- ties on Long Island that is a component of family planning program for adolescents programs provided in a local community tions that co-occur with autism spectrum a tertiary care, university based, medical and adults with a developmental disability. college. This will also be linked with a job disorders. Among the resources available center. It is staffed by psychiatrists, psy- search program and training peer mentors to researchers is a clinical database of chologists, primary care and specialist Education and Community Resources on the worksite to provide job support. more than 2000 cases of patients with physicians, social workers, special educa- The Cody Center provides educational ASD seen at the center. tion teachers, and behavioral consultants. Family Support Services include a consultation services to 20 Long Island Important contributions have been Further information can be found on our Resource Center for information and re- school districts as well as continuing edu- made by the consortium and include the web-site – www.codycenter.org ferrals, parent and grandparent support cation workshops for general and special identification of 2 candidate genes for The Cody Center congratulates all groups, social skills training, and Sib- education teachers, psychologists, guid- ASD (Dr. Eli Hatchwell), the identifica- who have developed this first issue and Shops sibling groups. In 2007, the Re- ance counselors, social workers and other tion of stem cell growth and development looks forward to seeing great success for source Center provided over 25 family professionals. The Center also offers in specific regions of the brain when Autism Spectrum News.

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Research at Columbia from page 23 Brain Behavior We are also evaluating the efficacy of two promising intervention programs order to precisely characterize the nature of Magnetic Resonance Imaging (MRI) Dr. Andrew Gerber is studying the created by Dr. Marion Blank and de- their difficulties and strengths (termed the is a sophisticated way to use magnetic way in which individuals with autism signed to develop basic literacy and “phenotype”). The genetic samples and phe- fields to safely take high quality pic- evaluate a person that they have never met math skills in non-speaking children notypes collected will be made available to tures of structures inside the body of a before in the light of past relationships. with autism. Reports suggest that many research scientists all over the world. This living organism, such as the human He predicts that individuals with autism children with autism show great interest will maximize the value of the resource for brain. We are using this valuable tech- are more accurate in their appraisal of in letters and numbers and that these a wide variety of future projects into the nique to search for and study differ- new individuals than individuals without skills presage an ability to develop sig- causes and mechanisms of autism. ences between the brains of typically autism, because they are less biased by nificant reading and math competence. In mouse and rat models, several genera- developing children and those with au- past social experience. This may make The programs are being implemented tions can be bred in a relatively short period tism. Dr. Daniel Salzman and col- social interactions more difficult, though with 16 children (8 receiving the liter- of time, making it possible to study genes leagues are using electrophysiology and may also make individuals with autism acy intervention and 8 receiving the related to autism. Though the genetic MRI to study an area of the brain re- more keen observers of details than others. math), 4 to 17 years old, with autism makeup and neural pathways in mice are sponsible for regulating emotions, Dr. Ken Hoyte is currently investigat- and no or very limited spoken language. much simpler than in humans, they are simi- called the amygdala, which has also ing the inter-relatedness of social and Both programs will be evaluated using lar enough to provide an excellent platform been implicated as a key site of dys- communicative/language deficits in au- tests designed to measure the children's for research. Dr. Jay Gingrich, funded by function in autism. tism. He employs behavioral and neuroi- acquisition of a host of literacy and math the Simons Foundation, is using a mouse In our own brain imaging lab, we are maging techniques to systematically exam- skills. At the completion of the programs, model to investigate the recent finding that using MRI in multiple ways to compare the ine the ability of children diagnosed with it is expected that the children in both paternal age is a risk factor for autism. By brains of children and adults with autism to autism to use and understand both linguis- groups will have attained a set of skills identifying the specific genetic loci that are those without this diagnosis. First, we exam- tic and affective prosody (i.e., the melody that, in the past, have been considered prone to abnormalities because of advancing ine the fine structure of the surface of the of speech). Dr. Hoyte's research will have beyond the reach of this population. paternal age, he and his colleagues hope to brain (called the cortex) as well as important useful implications for earlier detection and Finally, Dr. Johanna Lantz conducts better understand the mechanism behind this structures beneath the surface (subcortical) intervention in children with autism. research on social skills interventions for risk factor. to see if there are regions that are particu- children with autism. She is particularly Other collaborating neuroscientists at larly abnormal, and therefore may teach us Clinical Research interested in strategies that promote inde- Columbia are exploring the possibility that about the causes and potential treatments of pendent and flexible responding including autism arises from disturbances in the matu- autism. Second, we use a new MRI technol- Our clinical service at Columbia, the self-monitoring and video self-modeling. ration, remodeling, and stabilization of spe- ogy, called diffusion tensor imaging, to ex- Developmental Neuropsychiatry Program, Columbia’s autism program is proud to cific connections between neurons, perhaps plore the connections between various brain is a founding member of the Autism be a part of the inaugural issue of the Au- those involved in the acquisition of lan- regions, guided by evidence that it is these Speaks – Autism Treatment Network tism Spectrum News. We aim to commu- guage or social cognition. They have devel- connections, rather than individual areas in (ATN). The ATN has brought together nicate with those who share our desire and oped and extensively used two learning isolation, that are more closely related to the physicians and healthcare practitioners commitment to understanding the causes model systems: (1) pathways between sen- difficulties in autism. Third, we use mag- from leading medical centers around the of these disorders, and who seek more sory and motor neurons in the Aplysia (a sea netic resonance spectroscopy to examine the nation to evaluate the medical conditions advanced and effective treatments. Col- slug), and (2) the mouse amygdala, a brain concentration of certain brain chemicals in present in autism and provide best prac- laboration between members of the autism region that participates in the formation and various regions, thereby teaching us about tices for their identification and treatment. community has been the key to our achieve- storage of memories associated with emo- the health of different tissues. Finally, we By building an anonymous database, the ments thus far and, we believe, will be the tional events. They have cloned genes in the use functional MRI to look at which parts of ATN plans to create treatment guidelines cornerstone of our future success. Aplysia that correspond to human genes the brain are active in specific tasks, such as that will be made broadly available to related to Fragile X (a genetic syndrome that solving problems or rating the emotional physicians, researchers, parents, policy Dr. Peterson is the Chairman, Division can co-occur with autism) and mental retar- expression of faces. We believe that under- makers and others dedicated to enhancing of Child and Adolescent Psychiatry, Direc- dation and are investigating the role of these standing differences in brain function in the medical care of individuals with au- tor of MRI Research, Department of Psy- autism-linked genes in learning and memory autism will lead us to understand which tism. At Columbia, we are focusing in par- chiatry, Director, Pediatric Neuropsychiatry storage as well as associated fear-memory in regions of the brain are involved and how ticular on children with autism accompanied Research. and the Suzanne Crosby Murphy the mouse amygdala. they got this way. by sleep or gastrointestinal problems. Professor in Pediatric Neuropsychiatry. AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 45

Best Practice from page 21 An Example of Sub-typing in Autism Social Skills Groups from page 15 request the services their child truly needs to promote the best outcome. It think about children with autism. The good news is that some of the • Consider the family’s specific desires is important for parents to be wise con- The approaches chosen to study were theorist/developers of these approaches for skill acquisition? sumers by: Applied Behavioral Analysis (ABA), the have begun to place children with autism Treatment and Education of Autistic and into specific groups. For example Arnold • Assess satisfaction with the service at • Requesting specific plans and gener- related Communication handicapped Miller, who has spent over 40 years de- the conclusion? alization strategies Children (TEACCH), Daily Life Therapy veloping his approach, has parsed out (DLT), the Miller Method (MM), and children with autism into two major cate- In-school services also need to be ex- • Learning how to reinforce social Developmental Individual-difference Re- gories. Closed System Disorder is one of amined. Families should request that: skills through play dates and get- lationships-based intervention (DIR), the sub-types and is probably the most togethers which is often referred to as . familiar. According to Arnold Miller, • Services be very specifically de- Although there are many are approaches this is a child who may get over-involved scribed on the student’s individual- • Helping their child maximize worthy of studying, my dissertation had in routines, may insist that all doors be ized educational plan strengths and interests in social to be finished within my lifetime. closed, for example, and requires much settings We are in a unique moment in time. attention paid to transitions to avoid a • Those delivering the services have The diagnosis of autism has been around meltdown or tantrum when changing ac- knowledge about both social skill • Negotiating with school treatment for about 6 decades. As a result, most of tivities. The other category, System development and the specifics of teams to implement a true social the people involved in the initial work of Forming Disorder, refers to a child who delivering such services to children skills program that is individually developing these promising approaches seems to have hyperactivity and “orients on the autism spectrum designed and data-driven remain available for interview, and in to all salient stimuli in the environment, most cases, are continuing to work in this but engages with none” (Personal com- • Services be of sufficient intensity to Meanwhile, professionals who spe- area. Although I never thought it possible, munication, Arnold Miller, July, 1999). be effective cialize in autism and Asperger Syn- the key developers of these approaches For example, a child in this category drome can help families gain awareness were willing to answer an e-mailed sur- would run about a room, look at a shiny • School personnel are utilizing evi- of the current state of knowledge; un- vey and submit to a 60-minute taped in- object for a couple of seconds, dash over dence-base practices derstand what they as parents can spe- terview where they answered questions to the therapist to touch her watch, then cifically accomplish with their children; on areas such as defining autism, explain- stare at a shiny point of light reflected in • Interventions are being delivered in and know what critical questions to ask ing and developing interventions to ad- a window, etc. authentic locations such as play- of anyone currently providing social dress challenging behaviors, their intel- Serena Wieder, who co-developed grounds, classrooms, and lunchrooms, skills intervention in schools or com- lectual histories, and where they saw the DIR with Stanley Greenspan, has devel- rather than only professional offices. munity. Together, parents and profes- greatest gaps in research. Below are oped four major categories of children on sionals should continue to advocate for some of the results and findings of my the autism spectrum. Like with the Miller Sometimes parents do not feel suffi- more treatment-based research on social research in the area of relating definition Method, practitioners of DIR are better ciently knowledgeable or empowered to skills development now. of autism to practice of determining ap- able to match their pool of intervention propriate intervention. techniques to the needs of the children on the autism spectrum. Westchester County from page 37 Coordinator of Devereux Millwood Defining Autism Learning Center; Betty Crea Davidson, Conclusion Over 800 parents and providers attended Executive Director of Navigating the Part of what makes autism such a chal- this event. Spectrum; County Legislator, Thomas lenge lies in how the condition is defined. We are at a point in time where there is The members of the Autism Advi- Abinanti; Marlene Perlman Spector, All of the persons interviewed for my an explosion of methods, approaches, and sory Committee are: Judith Omidva- Ph.D., Psychologist and Peter study agreed that the characteristics listed techniques for working with children on the ran, Parent/Advocate; Marjorie Mad- Faustino, Ph.D., School Psychologist. in the DSM IV-TR do not accurately and autism spectrum. The diversity of the au- fis, Parent/Advocate; Nina Spooner, The Department of Community Mental fully describe the autism spectrum. tism spectrum, as currently conceived, sug- M.D., Parent/Advocate; Theresa Pir- Health is very excited about working Moreover, none of the people I talked to gests the importance of customizing inter- raglia, Parent/Advocate; Gail Chen, with the Autism Advisory Committee could agree on a common definition for vention to the needs of a particular person Parent/Advocate; Mary Zingaro, Par- over the course of the up-coming year autism. This lack of agreement suggests with autism. One important step towards ent/Advocate; Joanne McMahon, Spe- and greatly appreciates the generosity that we continue to place more and more this customization will be to sub-type diag- cial Education Consultant; Alison Tep- of the members in volunteering their people into the concept of “autism spec- noses within the autism spectrum and thus per Singer, Executive Vice President, time, expertise and energy on this im- trum” to the point where there is such great better match diagnosis to specific interven- Autism Speaks; Neil Boyle, Education portant endeavor. diversity that the term has become almost tion as is shown by the work of Arnold useless. Miller in the Miller Method and Serena Some of the persons I talked to recom- Wieder of DIR. It is my hope that the char- mended factoring groups of characteris- acteristics defining autism in the upcoming tics for better sub-typing of children and DSM V and other diagnostic references will adults with autism and therefore better fulfill this need. Autism Spectrum News matching diagnosis with treatment. For example, a diagnosis of Type II diabetes Stephen M. Shore, EdD, is the Execu- engenders specific treatment involving tive Director of Autism Spectrum Disor- exercise, diet, and possible injections to der Consulting. An internationally known Professional and Community maintain proper blood sugar. However, author, consultant, and presenter on is- the autism spectrum is so general at this sues related to the autism spectrum, he Education Program point that it’s impossible to generate spe- serves on the Board of Directors for the cific interventions from the diagnosis. Autism Society of America and is on the Like with diabetes, better sub-typing of Board of Directors for the Asperger’s children with autism will help match di- Association of New England. Please visit We Offer Group Discounts agnosis to intervention. his website: www.autismasperger.net. For Your Entire Professional Staff Émigré Children from page 19 greater understanding of child develop- And Community ment and an enhanced capacity to work the teachers. The teachers spoke of their with parents and other professionals. It own willingness to change classroom was clear that our program kindled new routines and activities to meet the needs understanding in teachers and ignited a of specific children and to plan carefully sense that they could be helpful to fami- Contact Us For Our to reinforce the strengths of each child. lies struggling with ASD. The participating teachers showed in- Ready-To-Go Solutions creased curiosity about children who Bruce A. Grellong, PhD, is Chief Psy- were puzzling, and wanted to know about chologist and Director of the Center for other kinds of delays or difficulties that Child Development and Learning at interfere with development. JBFCS, and Fern Fisher, MA, MS, (570) 629-5960 [email protected] Good training for early childhood edu- LCSW, is Director of JBFCS’s Early cators inspires improvement of practice, Childhood Consultation Services. PAGE 46 AUTISM SPECTRUM NEWS ~ FALL 2008

Adulthood from page 37 post-school adult living objectives, plan, should incorporate person- • Contact adult provider agencies be- and if appropriate, acquisition of centered planning, and reflect the fore your child “ages out” to see if child turns 16, or younger if determined daily living skills and functional vo- student’s interests and skills. they will provide job coaching for appropriate by the IEP Team, and updated cational evaluation. [34CFR 300.43 your child during the transitioning annually, thereafter, the IEP must include: (a)] [20 U.S.C. 1401(34)] • The work experiences or “community phase. This may help to ensure that based work assessments” chosen should there will be no break in services (1) Appropriate measurable postsecond- It is essential that the transition section be based on the student interests and between school and the beginning of ary goals based upon age appropriate tran- of your child’s IEP includes the three skills. Students should not be placed in a the adult program. sition assessments related to training, edu- mandated areas of: instruction, commu- community based work assignment sim- cation, employment, and, where appropri- nity experiences, and employment and ply because it is available. • Invite representatives from adult pro- ate, independent living skills and; post–school living objectives. vider agencies to attend you child’s Many school programs for individuals • Any placement should help the stu- IEP meetings (2) The transition services (including with autism, especially those with a large dent develop skills in a setting of courses of study) needed to assist the inclusion component will slight basic liv- personal interest to him/her, and • You can request that the IEP team child in reaching those goals. ing skills. Unfortunately, the post- where his/ her unique abilities can be allow your child to experience com- secondary goals in the areas of independ- utilized and improved with job munity based college experiences The term “transition services” means a ent living skills are not specifically re- coaching. during his final years under IDEA if coordinated set of activities for a child quired by law. It is up to the child’s team you feel that is appropriate. with a disability that: to determine whether IEP goals related to • Annual transition goals in the IEP the development of independent living should lead to successful post- high • Contact your states office of develop- • Is designed to be within a results- skills are necessary for the child to receive school outcomes. mental disabilities about enrollment oriented process, that is focused on a Free and Appropriate Public Education requirements and supports. improving the academic and func- (FAPE).” (71Fed at 46668) • Student progress should be docu- tional achievement of the child with a The required components of your mented and measurable. • If applicable, contact your state office disability to facilitate the child’s move- child’s transition plan are described in of Vocational Rehabilitation Services ment from school to post-school activi- IDEA 2004. You should make certain • Obtain progress reports about your about job training and support. Be ties, including postsecondary education, that your child’s IEP team adheres to child’s community based work ex- aware that the supports provided un- vocational education, integrated em- these requirements: periences. der this system are time limited. ployment (including supported employ- ment); continuing and adult education, • The student must be invited to par- • Maintain a portfolio and resume of Some Final Thoughts adult services, independent living, or ticipate in IEP meetings to discuss your child’s experiences, progress community participation; his/her goals after high school. reports, and favorable reviews from Since you are the captain of your your child’s supervisors. (Adapted child’s transition team you will also have • Is based on the individual child’s needs, • You can request additional IEP Transi- from Wrightslaw: Transition Plan- to foster a feeling of active cooperation taking into account the child’s tion meetings during the school year. ning, Graham& Wright) among your child’s school district, teach- strengths, preferences and interests and; ers, future adult service providers, and • You can invite local provider agencies Start Today governmental agencies for several years. • Includes instruction, related services, to attend your child’s IEP meetings. Knowing your child’s rights, timely community experiences. The devel- To prepare for life after school there opment of employment and other • The IEP, including the transition are several things that you can do: see Adulthood on page 50

Latino Children from page 36 It is believed that Latino children are with me that they feel intimidated by doc- might see the child on a day he or she is diagnosed much later than other children. tors who are not personable and behave not feeling well and consequently appears These variables cannot only influence or At the moment, the literature on autism in differently than what they have experi- lethargic or uninvolved, but the parent confuse a professional rendering the Latino children have found that the aver- enced within their culture. who sees the child daily knows that this proper diagnosis, but can create delays in age age in which Medicaid eligible Latino Parents need to be aware of the specif- behavior is usual. starting very valuable treatment. children were diagnosed is 8 years old in ics and possible manifestations of what It bears repetition to say that it is the Children with autism have deficits in comparison with white children, who are might be normal versus what might be parents who must inform the pediatrician, communication that are different than often diagnosed two years earlier at age 6. abnormal in their children. This is par- and in terms of culture and language, the language difficulties related to uneven Latino children with autism were diagnosed ticularly difficult among very young chil- better acquainted everyone is, the better it exposure to two languages and, depending one year later than African-American chil- dren since problems that could fall under is overall. Parents must understand that on the severity of the problem, manifest dren, who are diagnosed on average at more what is called neurodevelopmental disor- once a child has been diagnosed with an different patterns such as and than 7 years of age (Mandell, Listerud, ders are difficult to distinguish from each autism spectrum disorder, what follows is the use of phrases they hear from others Levy, & Pinto-Martin, 2002). other because they could be representative to find out how to help the child with his around them in a robot like manner. Another important component in the of other disorders (McConachie et al., or her specific deficits or weaknesses. These language and interactional prob- possible misunderstanding and delays in 2005; Trillingsgaard, Sorensen, Nemec, & The existing problems will require spe- lems do respond better to early interven- the prompt diagnosis of autism in Latino Jorgensen, 2005). But parents should cific interventions according to their tion thus indicating and reinforcing the Children is the traditional adherence to insist that their child’s pediatrician or needs, which could be in the language, importance of earlier detection which cultural values such as fatalism by their other professionals assess what they feel social or emotional areas. These interven- could be crucial for children who are parents. For example, many Latino par- is not normal and should make sure that tions should include helping the parents learning multiple languages at once. ents have a tendency to underreport symp- their child’s behaviors are not explained on the management of autism in their Another variable that affects the toms. This may be due to the cultural as language or culturally related. Parents child and offering emotional support to timely diagnosis of autism is the socio- value of fatalism, which determines one to should not worry that they will appear the entire family in a culturally and lin- economic level of the family (Palmer, leave things to fate rather than act overly alarmed or fear they will upset the guistically competent mode. Blanchard, Jean, & Mandall, 2005). promptly on a specific concern. This is professionals. Similarly, providers should In terms of research efforts, there is a Lack of resources often prevents the particularly evident when traditional be aware that traditional cultural values need to conduct research studies that pro- parents from seeking a second opinion grandparents feel that things will change, adhered to by the parents can affect com- vide a better understanding specific to which by definition places many Lati- or fear to admit that there is something munication between them. Latino children with autism and their nos with a major disadvantage that not wrong with their child, thus hoping the When the parents are well informed families. The following is recommended: only influences obtaining a timely diag- problem will go away (Center for Disease they can be the eyes and ears of their chil- nosis and availing themselves of needed Control, 2006). dren’s doctors by bringing to their atten- • To better understand how the Latino resources to help children with autism, In terms of diagnosis, it is very impor- tion important information that can help population accesses help specific to but can be misleading in reporting the tant to inform parents of the specific the doctor become aware of and able to ADS’s. prevalence and incidence of autism symptoms to look for and in turn inform recognize autism-related symptoms much among Latino children, which has been the child’s pediatrician. Many doctors in earlier in a child (Hutton & Caron, 2005). • To determine whether parental cul- found to be less than among non-Latino today’s world are very busy and unless For example, among the things that par- tural beliefs impact the prompt as- children. The end result in underreport- parents are assertive and come to the of- ents should understand is that many chil- sessment of children with autism. ing autism in Latino children is a mini- fice with a written list of their concerns, dren with ASDs may not show specific mization of the relevance and impor- many relevant symptoms can long go un- behaviors until they are much older; re- • To assess whether the child rearing tance of conducting further research noticed leading to a waste of precious petitive behaviors do not show until age 3 patterns practiced by many Latinos, studies crucial for obtaining a better time when a shared observation with the or 4. Another significant behavior to note particularly immigrants who are understanding of autism within this pediatrician would have been of great and share with the pediatrician is the lack population. help. Many Latino parents have shared of initiating joint attention. The doctor see Latino Children on page 48 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 47

Good Health from page 13 And unlike in typical practice settings, developing body systems. cause these behaviors are used by some medical staff from all different specialties Current hot research topics in the field people with an ASD to cope with anxiety, of health care was a pioneer in providing come together at each of our neighborhood include explorations of why people with they can be used by providers as a guide- sensitive, specialized services for indi- centers to learn from one another and to autism tend to be more susceptible to vari- line for assessing the patient’s level of viduals with disabilities. Unfortunately, collaborate on behalf of individual patients, ous gastrointestinal disturbances, immune discomfort and stress. Increased rocking this type of care is still unavailable to eliminating phone tag or communication and inflammatory conditions and sleep may mean increased pain or anxiety. thousands upon thousands with autism breakdowns. For example, when a child disorders. One interesting area of investi- People with autism are typically hyper- and other disabilities. visits the center, a family doctor can walk gation is the so-called “hygiene hypothe- sensitive to many types of sensory stimuli, At Premier HealthCare, patients visit down the hall to talk to the neurologist and sis,” which proposes that current hygiene easily ignored by the general population. general practitioners, specialists, dentists, coordinate medications, and then on the way practices in western societies prevent chil- Packed waiting rooms, glaring and buzz- psychiatrists, physical and occupational back, inquire with the social worker about dren from being exposed to the environ- ing fluorescent lights, scratchy upholstery therapists and other professionals, in a eligibility for a summer camping program, ment in a way that encourages proper and cloying deodorizing agents can all familiar setting in their communities. Pre- and finally, catch the psychiatrist to ask development of their immune systems. turn a routine medical visit into a very mier employs a diverse multilingual staff about the child’s behavioral progress. And in certain children, including those challenging day for our patients. A wel- who can provide services and information In 2002, the U.S. Surgeon General recog- with a genetic risk for autism, this may coming waiting room experience that is to our patients and their families in a cul- nized Premier HealthCare as a national have a long-lasting effect on brain devel- predictable, cool and away from the bustle turally appropriate way. Our health care model in the provision of health care for peo- opment and neurological reactivity. can result in a happy and easy-going pa- providers are trained to be sensitive to and ple with disabilities in their communities. Autism has also been associated with tient for the long term. aware of the needs of people with disabili- genetic and congenital conditions such as We as doctors, dentists, nurses and ties, who may have acute anxiety, trouble Health Concerns Specific to Autism , tuberous sclerosis other clinicians must understand our obli- communicating or other issues requiring and congenital rubella syndrome. gation to explain procedures to our pa- extra time and understanding that may be In addition to being aware of the social Lastly, there are a number of general tients in a way that diminishes fear, en- difficult to find in a standard doctor’s office, and psychological needs of individuals with considerations to keep in mind when hances our patients’ understanding of let alone a hospital emergency room. autism, health care providers should also be working in a medical environment with their health and empowers them to make “A level of sensitivity is a critical com- aware of certain medical issues that arise people with autism. When patients with healthful choices. ponent of serving people in their commu- more frequently in these patients. limited verbal skills experience discom- Peter DellaBella, M.D. is the Associate nities,” said Marco Damiani, director of By the latest estimates, 40 percent or fort or are in pain, they may express their Medical Director and Chief of Psychiatry Clinical and Family Services at YAI/ more of people with an ASD also have an distress through aggression or self- at Premier HealthCare, a member of the National Institute for People with Dis- intellectual impairment. In classic autism, injurious behaviors, by yelling or by with- YAI/National Institute for People with abilities. “This has led Premier Health- the rates are as high as 70 percent. In ad- drawing. What, to untrained staff, may at Disabilities Network. For more informa- Care to provide services by clinicians who dition, the medical community has long first appear to be a behavioral issue could tion on medical services for children and have special awareness and training about known that up to a quarter of people with actually be a serious health concern and adults with autism spectrum disorders and our patients’ needs, as well as to a conti- an ASD also have epilepsy. As a condi- lead to a medical emergency. other disabilities, please contact YAI nuity of care, so that patients don’t have tion affecting many areas of brain and A common feature of autism is the LINK at 1-866-2-YAI-LINK; TDD: 212- to get to know a new doctor every time behavioral development, autism — what- prevalence of repetitive behaviors: rock- 290-2787, [email protected] or visit they have a checkup.” ever its causes are — also affects other ing, hand-flapping, jumping, pacing. Be- www.yai.org.

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Seaver Center from page 40 associated with this gene (Silverman et al, Tomography (PET) radiotracers to explore attention in individuals with autism and was 2008). Other related work from the Fam- the hypothesis that ASD is associated with recently funded by NIMH to study the cir- studies investigating genetic factors in ily Studies Program found that children deficient serotonin innervation in forebrain cuitry involved in empathy in autism. And autism and related disorders. In associa- with autism and high levels of intense cortico-limbic areas. Dr. David Grodberg is investigating the tion with the Greater New York Autism interests, unusual preoccupations, rituals, Dr. Evdokia Anagnostou is leading an neural circuitry of self produced tactile Research Center of Excellence (GNY- and compulsions were more likely to have fMRI study examining the function of the stimulation in an attempt to provide a neuro- ARCE), the Family Studies Program per- parents with Obsessive Compulsive Dis- orbitofrontal network in autism, a network biological explanation for self stimulatory forms extensive clinical evaluations in an order (OCD) or OCD traits (Hollander et likely involved in repetitive behaviors and and self injurious behaviors seen in ASD. attempt to determine how autism-related al., 2003). the executive dysfunction observed in For more information about neuroi- difficulties with social interactions, com- Participation in our studies involves individuals with autism. Individuals par- maging studies, please contact Nicole munication skills and/or restricted and interviews with the parent/caregiver, an ticipating in this study also receive oxyto- Feirsen ([email protected]) at repetitive behaviors and interests may run observational and interactive interview cin to examine its effect on ortbitofrontal 212-241-3692. in families. We work with all available with any child diagnosed on the autism circuitry (funded by the Seaver founda- family members to assess behavioral traits spectrum, intelligence testing for all chil- tion). Dr. Anagnostou has also received Conclusion that may run in families and attempt to dren within the family, and a small blood funding by NARSAD and Autism Speaks locate genes associated with these charac- draw for all members of the family. All to study differences in glutamate concen- The Seaver and New York Autism teristics in individuals with autism and interviews can be done during the day, trations in the orbitofrontal circuitry and Center of Excellence is an interdiscipli- their families. evening, or weekend hours and timing can other brain chemicals that may be related nary, translational, and collaborative ef- Prior published work from the Family be adapted to busy schedules. We also to neuronal integrity and metabolism in fort between clinicians and scientists at Studies Program reported on evidence that travel to your home for all assessments. children and adolescents with ASD. In Mount Sinai School of Medicine and sev- repetitive behaviors and age of phrase For more information about family other, related work, our group is examin- eral institutions across the United States speech development are more similar studies, please contact Lauren Brickman ing the developmental trajectory changes and abroad. We are extremely grateful to within affected siblings that are both diag- ([email protected]) at 212-659- of the white matter tracts in children and all the individuals and families who par- nosed with ASD than between siblings 5654. adolescents with autism using DTI. ticipate in our research. Our team be- without ASD (Silverman et al., 2002). Dr. Ting Wang and Dr. Latha Soorya lieves the key to success lies in translating This information was used to subgroup The Neuroimaging Program at the have received funding by NARSAD and the knowledge gained from research to families with autism according to these Seaver Center uses multiple imaging tech- Autism Speaks to assess both the neural and developing breakthrough treatments that different “familial” and likely genetically- niques to look at the activity of the brain behavioral effects of our 12-week social meaningfully impact community care. based characteristics. In turn, this sub- regions and circuitry involved in autism. skills groups for school-age children with grouping helped inform a study that There have been valuable contributions to ASD. Using a randomized treatment design Eric Hollander, MD, is the Esther and looked across the genome for a chromoso- our understanding of autism from imaging and fMRI technology, the study compares Joseph Klingenstein Professor, Psychia- mal location where an autism associated studies. At the Seaver Center, several in- the effects of a cognitive behavioral ap- try, Alexander Kolevzon, MD, is Assistant gene might reside and found evidence for vestigators are working to understand the proach and a play-based approach on behav- Professor of Psychiatry and Pediatrics, a site on chromosome 2 (Buxbaum et al., differences in structure, function, and neu- ioral measures of social cognition and on the Joseph D. Buxbaum, PhD, is Professor of 2001). Subsequent to this work, a specific rochemistry in individuals with autism. As neural circuitry underlying key aspects of Psychiatry, Neuroscience, Genetics and gene related to autism was found in the part of the STAART Centers Program ini- social cognition. Dr. Jin Fan, the Director of Genomic Sciences, Jeremy M. Silverman, region previously identified on chromo- tiative, the Seaver Neuroimaging Program the fMRI lab at Mount Sinai, is interested in PhD, is Professor of Psychiatry, and some 2 (Ramoz et al., 2006). Finally, we has been investigating key elements of the investigating possible abnormalities in the Evdokia Anagnostou, MD, is Assistant examined specific autism related traits serotonin system using Positron Emission neural circuitry involved in all aspects of Professor of Psychiatry. PAGE 48 AUTISM SPECTRUM NEWS ~ FALL 2008 As a Parent from page 30 others their age can do, but they are learn- Autism Spectrum News ing. The trick is to break down any task keep up with "normal" children. I remember and present the structured sequence to Upcoming Theme and Deadline Calendar reading about the Rosenthal study of the them. If they like the activity, they get it 1960s in California about the “Self-Fulfilling right away. If not, more repetitions and Winter 2009 Issue: Prophecy” and how the teachers profoundly motivation is needed. “Understanding and Treating Autism Spectrum Disorders” affected the children's development simply by My goal: if they can catch up to the Deadline: September 15, 2008 their attitude and behavior towards the chil- others by the time they are 18-21 and can dren in the study. I have learned that when I be self-sufficient and productive and go Spring 2009 Issue: expect more from my children, they do more, to college), then I will be satisfied. I take “Helping Parents and Family Members Cope with ASD’s” learn more, develop more. a spiritual long view and I am always I remember to this day, when each grateful when I see improvement. I think Deadline: December 15, 2008 child's personality changed and each lost the most important things are: 1) to not

language. The road back was more diffi- give up, even when it seem hopeless and Summer 2009 Issue: cult than anyone can imagine. At this 2) always picture in your mind how they “Education for Children & Adults with Autism Spectrum Disorders” time, the twins are about 2-3 year behind will be down the road...imagination and Deadline: March 15, 2009 academically, BUT they do interact, they working towards the child's goals are do relate, and they do participate. They interlinked. Fall 2009 Issue: are catching up and they speak well. They “Addressing the Needs of Adults on The Spectrum” still cannot shop for food in a supermar- Beatrice Block Deadline: June 15, 2009 ket, or some other tasks or activities that Parent

Inclusion from page 29 dents need to feel welcome and comfort- As a Psychologist from page 31 the increased focus on Autism Spectrum able so they can focus their energy on the Disorders and their associated etiolo- With consistent practice and reinforcement tasks at hand. The classroom is a place families to assist in achieving a sense of gies has brought many issues to light, I they can be faded out in hopes that this ap- that holds many challenges for children normalcy to their adolescence. As these believe we still have more work ahead propriate social behavior has been internal- with autism, not the least of which is just adolescents transition into adulthood, it to assist individuals with Autism over- ized and the script is no longer necessary. learning how to become a part of it all. behooves professionals to become famil- come the daily challenges they face. Learning strategies to help and teach iar with the array of services for adults The rising numbers of individuals being students to become part of their social Diana Friedlander is a special educa- with ASD and how increased advocacy at diagnosed with Autism have seemed to world is not an easy task. However as tion inclusion teacher in elementary edu- that juncture is necessary to promote inspire educators, medical profession- inclusive practice continues this is per- cation in Ridgefield, Connecticut and a community inclusion. als, social workers and psychologists haps the greatest challenge for classroom Doctoral student at Western Connecticut The growing body of research on Au- alike to embrace these individuals and teachers. An overwhelming classroom is State University. You may contact her at tism today has concentrated on the bene- move towards positive change; there- not a place conducive to learning. Stu- [email protected]. fits of early intervention and the myriad fore the promise of research in this area of treatment modalities that can be incor- does not seem as daunting as it once porated into an effective, individualized may have been. treatment milieu; this focus has impacted NARSAD from page 7 Ph.D., identified mutations in the SERT professionals to widen their existing Danielle M. Torre, M.S. gene that triggered elevated SERT activity. modes of treatment and truly achieve the Behavioral Health Specialist “We don’t think the platelet itself Dr. Carneiro is now hot on the trail of most individualized (and hence most ef- NYS Certified School Psychologist contributes to autism,” Dr. Blakely integrin interactions with brain SERT and fective) methods of intervention. While Cardinal McCloskey Services clarified, “but rather we believe that the is engaged in engineering mice that ex- brain’s serotonin transporter may be press human integrin beta3 mutations. controlled by integrin proteins in a very “These new animal models offer an un- As a Society from page 31 ties. We are challenged as a community to similar manner.” precedented opportunity to peel away the apply and adapt arts learning to enhance the complexity of autism and possibly de- fully accessible. development of those with autism and to Elevated SERT Activity and Autism velop new therapies,” Dr. Blakely com- Through the arts, we aim to give rise to include the arts in approaches to treatment. mented. The research also may uncover the full realization and expression of Furthermore, and perhaps most signifi- Drs. Carneiro and Blakely believe that new ways of treating depression. “Current thoughts, emotions, and ideas that might cantly, the shared arts experience links us to too much SERT activity imposed by ab- antidepressant mechanisms still essen- otherwise be untapped. In conjunction with one another in ways that are beautiful and normal integrin interactions could restrict tially work in the same way they did 25 necessary medical, therapeutic, and educa- profound. The arts call us to acknowledge our availability of serotonin in the brain dur- years ago – by targeting transporter uptake tional interventions, arts involvement is a commonality and address the multi-faceted ing development, as well as in the adult. of neurotransmitter [i.e., serotonin] di- critical component in serving the whole nature of each individual with autism. “What is even more striking is that this is rectly,” Carneiro said. “Now we may have a person. Research has shown the efficacy of the second time we have found elevated completely new way to go about it.” the arts in enhancing skill levels and con- Vanessa Young SERT activity associated with autism,” This article was adapted by NARSAD tributing to overall academic achievement Executive Director said Dr. Blakely. In a 2005 study, Blakely with permission of Vanderbilt University in young people with and without disabili- VSA Arts of New Jersey and Vanderbilt collaborator James Sutcliffe, Medical Center. Visit www.narsad.org. see Partnership on page 35 provide the best services possible to the Latino Children from page 46 delays related to autism leading to a individuals we serve and their families. waste of precious time. individuals with ASD (Watanabe & Stur- The partnership with the Seaver Center struggling economically, affect the mey, 2003) and have been successful in reflects a commitment to advance the prompt diagnosis of autism. Among • To refine the classification process improving outcomes for adult consumers field for families and professionals. these is the custom of sending children and how treatment decisions are at F·E·G·S. F·E·G·S upholds its commitment to back home to be cared for by relatives made once the diagnosis is made. The implementation of visual-support working with the unique wants and needs who may minimize the existence of au- structures in F·E·G·S day habilitation ser- of each person served, in an environment tism. Others may use folk medicines or vices also provides the groundwork to de- that embraces excellence, caring, dignity, seek a curandera before contacting a • To conduct more studies that deter- velop research programs on the effective- integrity, and respect.” health care provider, a practice that may mine whether there is a misdiagnosis ness of staff training programs in adult delay the diagnostic process. of autism in Latino children overall ASD, an area with limited research. This F·E·G·S Health and Human Services including the major Latino groups in capitalizes on the individual expertise of System, one of the largest and most com- • To further understand whether un- the United States. F·E·G·S (on staff training) and MSSM (on prehensive not-for-profit health and hu- even exposition to two languages or best practice interventions). man services organizations in the United dual language acquisition in Latino • To conduct studies that offer Latino The promising partnership between States, assists individuals with mental, children bears any relationship to the parents and professionals a better F·E·G·S and the Seaver Center on devel- developmental and physical disabilities, delays in the proper diagnosis of au- understanding of autism, including oping evidenced based practices for those who are unemployed, immigrants, tism by professionals. rearing practices that can confound adults with ASD is firmly in line with the families, youth, the frail elderly and many developmental delays, such as foster- mission of FEGS. As stated by Jonas others. Each year, the F·E·G·S network • To determine whether Latino parents ing over dependence versus inde- Waizer, Ph.D. and Chief Operating Offi- reaches more than 100,000 individuals and compare their child’s language de- pendence and autonomy should be a cer of F·E·G·S,: “F·E·G·S is experienced families each year, at more than 350 facili- lays related to autism with other chil- priority (Vazquez, C. 2004; Rhodes, in helping individuals with ASD and we ties, residences, and off-site locations in dren who had experienced language Ochoa, & Ortiz (205). continually invest in staff development to New York City and on Long Island. AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 49

OMRDD Platform from page 1 various treatment protocols through the dents with autism. These include identify- IBR Wins $1.9 Million Grant development of laboratory schools pro- ing useful education programs for autistic to implement a “People First” system From DOD viding both state-of-the-art services and students; endorsing evidence based prac- of comprehensive services; and education and facilitating intensive obser- tices for classroom management; encour- OMRDD’s Institute for Basic Re- vation and applied research. The consor- aging pre-service and in-service training • Providing families with information. search in Developmental Disabilities tium will also pursue development of an in the area of autism; and funding new (IBR) recently won a $1.9 million unmatched brain tissue collection that will short-term assessment and behavioral In May 2008, Ritter unveiled program project grant from the fed- allow New York State to support the most intervention projects for students with OMRDD’s Autism Platform in response eral Department of Defense Autism extensive brain tissue research to date. autism and other developmental disabili- to the mounting concern of those living Spectrum Disorders Research Pro- Organizations that have already joined ties who present behavioral challenges. with autism and those whose life work gram to examine how autism changes the consortium include Columbia Univer- The Interagency Task Force on Autism and calling is to educate and support indi- the brain throughout a lifetime. sity, the University of Rochester, New will include officials from the Department viduals with ASD to achieve and contrib- “This grant will allow us to York University Medical School, Nathan of Health; State Education Department; ute. She highlighted two key components greatly expand research that has Kline Institute, The Regional Center for Office of Mental Health; Office of Chil- of the platform, a statewide collaborative recently been started at our facil- Autism, NYS Institute for Basic Re- dren and Family Services; Council on research consortium, The New York State ity,” stated IBR Director W. Ted search/CUNY College of Staten Island, Children and Families; Commission on Autism Consortium, and an interagency Brown, MD, PhD. Wadsworth Center, Psychiatric Institute Quality of Care and Advocacy for Persons Task Force. The promise of each of these The research will establish corre- of New York State, Albert Einstein Col- with Disabilities; and the Developmental initiatives lies in combining the talent, lations between structural and bio- lege of Medicine, the State University at Disabilities Planning Council. knowledge and ingenuity that reside chemical abnormalities in a brain Albany, Mount Sinai Medical Center and In addition to establishing the Autism within New York – in its scientific, edu- with autism and the clinical symp- the University at Buffalo. Consortium and the Interagency Task cational and service community and in its toms of the disability. The study Gov. Patterson believes the state must Force, OMRDD’s Autism Platform initi- policy leaders - and applying the full force could help scientists understand the take a leading role in autism research. He ates a comprehensive list of system-wide of those combined resources to the shared brain abnormalities connected with stated, “New York State already boasts service and practice improvements, many mission of examining and responding to autism, develop methods for early some of the finest medical and educa- of which will serve a broader range of autism and ASD. diagnosis, develop an approach to tional facilities in the world; however individuals in the OMRDD system, but “New York State already boasts some preventing the progression of devel- each such institution, standing on its own which may have particular significance of the finest medical and educational fa- opmental changes early on, and pos- and limited by its own institutional inter- for those with ASD. These include devel- cilities in the world, as well as some of its sibly reduce the severity of autism ests, will not best serve the State’s autism oping best practice models in residential finest service agencies; however each symptoms. IBR scientists Jerzy We- constituency. The potential presented by services, standard diagnosis guidelines, such institution, standing on its own and giel, PhD.; W. Ted Brown, MD, a collaboration of these outstanding positive approaches to behavioral inter- limited by its own institutional interests, PhD.; Abha Chauhan, PhD.; and institutions would be greater than the vention and management, statewide train- will not best serve the State’s autism con- Thomas Wisniewski, MD, will lead sum of its parts.” ing for first responders, developing mod- stituency,” said Gov. David A. Paterson, the study by examining the postmor- “New York has taken an important els for intensive person centered planning who believes the state must take a leading tem brains of individuals with and step forward today, recognizing that au- and developing a statewide program for role in autism research. “The potential without autism to identify structural tism is a growing healthcare crisis war- intensive, but short term, assessment, presented by a collaboration of these out- and chemical abnormalities. This ranting special attention from the state treatment and stabilization for adults with standing institutions would be greater than research may lead to potential treat- and its agencies,” said , Ex- ASD among others. As the Autism Plat- the sum of its parts.” ments of the disease. ecutive Vice President of Autism Speaks form generates discussion among and the mother of a daughter with autism. OMRDD’s many partners – families, ser- A New York State Autism Consortium “The creation of the Autism Consortium vice providers, self advocates and practi- nature, of the crisis in autism facing New under OMRDD and the establishment of tioners – the agency will seek to respond The New York State Autism Consor- York families,” said Ritter. the autism platform will encourage more to the new and emerging needs of those tium, under the leadership of the The consortium will also develop a of the state’s best scientific minds to col- faced with autism and ASD, and the Au- OMRDD’s research arm, the Institute for professional training program, responding laborate on autism research, and increase the tism Platform will evolve. Basic Research in Developmental Dis- to the increasing need for qualified and state’s focus on delivering key services to These ambitious goals have been well abilities (IBR), will create an autism carefully trained practitioners to accu- individuals with autism and their families.” received among different circles that are “brain trust” in New York State, gathering rately diagnose and treat individuals with “We are thrilled to play a key role in connected to autism. many of the state’s finest scientific minds ASD. The program will reach practitio- the New York State autism consortium,” Assemblyman Peter M. Rivera, Chair within medical centers, universities, re- ners from all disciplines across the state Ritter said. “Creating a New York State of the Assembly Standing Committee on search centers, service providers and foun- with a curriculum that will include a gen- research consortium will provide the in- Mental Health, echoed Alison Singer’s dations to collectively research, treat and eral track for all professionals, as well as frastructure, resources and collaboration claim of an autism crisis when he stated, address autism and autism related disorders. more specialized tracks created specifi- necessary to best advance basic and ap- “With one in 150 children being diag- The consortium will be the first of its cally for the various disciplines. It will be plied research in this critical area, and to nosed with Autism Spectrum Disorder kind, engaging expertise of a wide range implemented though individual medical best support people with autism and re- there is an immediate need for diligent in initiatives that will address the most centers, schools, residential schools, de- lated disorders.” and focused public policy efforts. We pressing needs surrounding autism today. velopmental centers and community know that early intervention and other One groundbreaking component of the based clinics that will participate as sepa- The Interagency Task Force treatments hold promise in helping adults consortium will be development of a vol- rate training institutes. and children with autism live better lives. untary registry of individuals with autism. Through teleconferencing and video- The Interagency Task Force will bring The work of the autism consortium will This registry will bring to New York for conferencing, practitioners from all re- together leaders across state government help bring those treatments into full prac- the first time the opportunity to study inci- gions of New York and from disciplines to pursue a person-first, coordinated sys- tice and secure needed answers to why we dence of this disability in relation to other ranging from speech therapy to pediatric tem of wide ranging supports for indi- have such dramatically increasing rates of factors as well as the response of indi- medicine and psychology will be able to viduals across the full range of their needs autism in our communities.” viduals to education, treatment and ser- advance their capacity to serve individuals and throughout the different stages of “We are thrilled to play a key role in vices. The registry will also allow the with autism. their lives. During the May press confer- New York State’s autism efforts. As part tracking of medical, demographic and The consortium will be poised to com- ence Rebecca Cort, Deputy Commissioner of our agency-wide commitment to Put- neonatal screening data and early child- pete for funding on a larger scale than is of VESID for the State Education Depart- ting People First and providing person- hood screening results. possible by any of its individual members, ment, which will co-chair the task force centered, individualized care, we are dedi- “The registry would enable New funding for expanding current research in with OMRDD, acknowledged five key cated to advancing our understanding of York’s policy makers, educators and state early identification of at-risk infant sib- initiatives SED will carry out in the 2008- autism and developing state-of-the-art and voluntary service provides to under- lings of individuals with autism and other 09 year to promote availability and effec- services and supports for individuals stand the magnitude and over time, the populations and to explore the efficacy of tiveness of education programs for stu- throughout the state,” said Ritter.

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Strategic Plan from page 1 search. In addition, the IACC is com- Adulthood from page 46 Life Journey Through Autism: A Guide mitted to fostering collaboration, part- For Transition to Adulthood, published to the RFI, the research workshops, and nership, and scientific excellence to ac- planning and acting in incremental steps by the Organization for Autism Research, various public meetings have been con- celerate progress. will help to make the process less stress- 2006 www.researchautism.org. An excel- solidated into roughly 30 initiatives. In addition to the IACC research stra- ful. It will also enable you and your child lent and comprehensive guide on the tran- While this may seem like a daunting “to tegic plan, the National Database for Au- to have time on your side. sition process. do” list, the initiatives have been organ- tism Research (NDAR) will be a critical ized around 6 general questions, ques- tool in fostering communication through- Resources for Transition Planning Web Sites tions that are commonly asked by indi- out the global ASD research community. viduals and families when facing the NDAR will provide a common platform Print Resources challenges of ASD: for research data to be shared among in- U.S. Department of Education, vestigators, encouraging synergy, and Smith, M.D., Belcher, R.G. & Juhrs, P.D. http://idea.ed.gov. • WHEN should I be concerned? accelerating research endeavors. De- (1995). A Guide to Successful Employ- IDEA 2004 legislation and regulations. veloped in 2007, NDAR will begin ac- ment for Individuals with Autism. Balti- • HOW can I understand what is hap- cepting data from the NIH Autism Cen- more, MD: Paul H. Brookes Publishing Co. National Dissemination Center for Chil- pening? ters of Excellence (ACE) awardees in dren with Disabilities (NICHY), the summer of 2008. The ACE program Wehman, P., (2001). Life Beyond the http://www.nichcy.org • WHAT caused this to happen and awards represent a joint venture be- Classroom: Transition Strategies for Young Central source of information on disabili- can this be prevented? tween five NIH institutes, supporting 6 People with Disabilities. Baltimore, MD: ties, IDEA and effective educational prac- centers and 5 networks to coordinate Paul H. Brookes Publishing Co. tices. • WHICH treatments will help? autism research. The challenges that ASD present to Wehman,P. & Kregel, J. (1994). More Wrightslaw, http://www.wrightslaw.com, • WHERE can I turn for services? society as a whole, and affected indi- Than A Job: Securing Satisfying Careers A comprehensive website about special viduals and families specifically, de- for People with Disabilities. Baltimore, education law and advocacy. • WHAT does the future hold? mand a rapid and coordinated response. MD: Paul H. Brookes Publishing Co. The vision for the Strategic Plan is that it Division on Career Development & Tran- To address each of these questions, the will, “accelerate and inspire research Wehman, P. & Targett, P.S. (1999), Vo- sition (DCPT), www.dcdt.org plan will include not only research oppor- that will profoundly improve the health cational Curriculum for Individuals with A wealth of information on how to access tunities, but short and long term objec- and well being of every individual on the Special Needs: Transition from School to career/vocational and transition services tives with metrics for evaluating progress autism spectrum across the lifespan. Adulthood. Austin, TX: PRO-ED. for persons with disabilities. and proposed budgetary requirements. The Plan will set the standard for public- Science rarely progresses as expected. private coordination and community Most scientists recognize that some of the engagement.” In addition, the Plan will many important discoveries have been be a living document, revised annually serendipitous, neither scripted nor as new insights emerge or new chal- Dimensions from page 39 success. Children with autism who re- ceive non-specialized and ineffective in- planned. Nevertheless, the IACC be- lenges arise. The IACC looks forward intrinsically motivating materials and on fol- lieves that by beginning with consumer- to continued input from many stake- struction do not make significant gains, lowing the child’s lead in language instruction. focused questions and formulating ob- holders so that the Plan will be in- and have significantly less positive edu- NET also uses Skinner’s Verbal Behavior lan- cational outcomes and achievements. It jectives that reflect urgency and are ac- formed by both the most important guage classification system/analytical tool to countable, the strategic plan will help needs and the most significant scientific is imperative that parents understand the guide language instruction (Skinner, 1957). facilitate breakthroughs in autism re- opportunities. hallmark characteristics of quality pro- Elements of naturalistic instruction in- grams, as educational placement directly clude providing an environment in which affects ultimate outcomes. Programs de- learners request spontaneously. In addition, livering high quality services operation- Dr. Hollander from page 26 and autism. Dr. Hollander has received naturalistic teaching interactions that facili- ally define their instructional goals, use two national research awards from the tate rapport building, and pair the instructor empirically verified instructional strate- obsessive-compulsive-related disorders such American Psychiatric Association and a with reinforcement, are also desirable. The gies, and rely on ABA teaching technol- as body dysmorphic disorder, pathological Distinguished Investigator Award from following data were collected in 12 samples ogy to provide both formal and naturalis- gambling, and autism. Dr. Hollander has the National Alliance for Research in of 8 children with 10 instructors. Mands oc- tic instruction. High quality programs spearheaded affiliation agreements be- Schizophrenia and Depression. curred an average of 1.4 times per minute, also ensure the fidelity of the implemen- tween Mount Sinai School of Medicine During his career, Dr. Hollander has indicating a high level of initiation training. tation of these approaches, and collect and service providers such as the YAI/ published more than 450 scientific reports Instructors also delivered an average of 6 non data to guide the treatment decisions NIPD Network. He serves as Chair of the in the psychiatric field. He has edited 19 -contingent reinforcing statements in 5 min- made for each learner. DSM-V Research Planning Agenda for books, including Autism Spectrum Disor- utes, demonstrating good adherence to pair- Obsessive Compulsive Behavior Spec- der (2003), the American Psychiatric ing (rapport-building) procedures. Mary Jane Weiss, PhD, BCBA, is Clinical trum Disorders. Publishing Textbook of Anxiety Disor- Consultant, Cecelia M. McCarton, MD, is the Dr. Hollander has received a Research ders (2002), and The Clinical Manual of Summary Founder and CEO, Ivy Feldman, PhD, Scientist Development Award from the Impulse Control Disorders (2006). Dr. BCBA, is Educational Director, and Jackie National Institute of Mental health to in- Hollander also serves as a reviewer for 8 Quality programs for children with Hickey, M.S, BCBA is Associate Educational vestigate the psychobiology of obsessive- medical journals. autism spectrum disorders are essential to Director at The McCarton Foundation. compulsive and related disorders. He has Dr. Hollander is listed in NY Maga- received orphan drug grants from the zine’s “Best Doctors”, and “Best Doctors Food and Drug Administration to study in America”. He has made frequent me- new treatments for body dysmorphic dis- dia appearances on the Today Show and Brain Stimulation from page 23 (Mantovani, Lisanby et al. 2006), where order, child/adolescent autism, and adult Dateline NBC and has had interviews in applying low frequency TMS to the sup- autism, and a grant from the National People Magazine and the New York cortex in ASD patients and healthy con- plementary motor cortex significantly Institute of Drug Abuse for a study on the Times. He is co-author of a book with trols. We also perform fMRI and compare reduced repetitive behaviors. neurobiology of pathological gambling. Marc Summers, Everything In Its Place: levels of activation of specific brain areas Finally, we are exploring the language He has received several grants from the My Trials and Triumphs with Obsessive during passive social tasks. Our hypothe- symptoms of autism and have introduced National Institute of Mental Health, and Compulsive Disorder (Penguin Putnam, sis is that patients with ASD have higher an fMRI strategy to study language proc- the National Institute of Neurological 1999) and co-authored with Nick Bakalar, excitability of motor cortex and lower essing even in very low functioning sub- Disorders and Stroke, to develop treat- Coping with Social Anxiety: The Defini- level of activation of mirror neuron sys- jects. Our preliminary data indicate that ments for borderline personality disorder, tive Guide to Effective Treatment Op- tem during the social tasks. A single ses- high functioning ASD subjects use alter- adolescent body dysmorphic disorder, tions (Henry Holt and Company, 2005). sion of rTMS is used to see if activating a nate brain connections for language proc- specific brain area can produce temporar- essing, while low-functioning subjects ily improvement in social functioning or have not established the alternate path- repetitive behaviors. This will lay the ways. We are preparing a treatment trial Send Us Your Comments ground work for developing future treat- to specifically increase functioning in a ments in autism. target brain area identified by the fMRI- We also have a treatment trial for re- guided approach. And Suggestions petitive/stereotypic behaviors in autism, Utilizing fMRI image-guided targeting sponsored by the Autism Speaks. The of a specific brain area to treat symptoms E-mail: [email protected] concept stemmed from the similar studies of ASD is a break-through in autism in- in Obsessive-Compulsive Disorder vestigation and treatment development. AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 51

Dr. Koplewicz from page 27 Hospital Westchester Division, a fellow- a Commissioner of the New York State ing America, LIVE with Regis and Kelly, ship in Child Psychiatry at Columbia Uni- Commission on Youth, Crime and Vio- CBS This Morning, Oprah, The View, CNN of child psychiatric disorders. Founded in versity College of Physicians and Sur- lence and Reform of the Juvenile Justice American Morning, CNN Weekend House- 1997, under Dr. Koplewicz's direction the geons, an NIMH Research Fellowship in System. Since 1997, Dr. Koplewicz has calls, NBC Nightly News, ABC World Child Study Center has experienced extraordi- Child Psychiatry at the New York State been the Editor-in-Chief of the Journal of News Tonight and Dateline NBC. nary growth and now has over 200 faculty Psychiatric Institute, and the Executive Child and Adolescent Psychopharmacol- Dr. Koplewicz's research and publica- members and staff, an annual operating budget Program in Health Policy and Manage- ogy. He was also a member of the work- tions have focused on diagnosis, treat- of over $20 million, and a research grants port- ment at Harvard University School of ing group organized by the U.S. Assis- ment, and prevention of mental disorders, folio in excess of $40 million. Public Health. tant Surgeon General and the U.S. De- and he has been at the forefront of public Dr. Koplewicz has designed the Center Dr. Koplewicz is the recipient of many partment of Health and Human Services education to dispel the myths and stigma so that its research initiatives advance the awards, including the 1997 Exemplary to address the effects of terrorism on surrounding mental and emotional disor- understanding of the causes and treat- Psychiatrist Award from the National children's mental health. ders of children and adults. Author of ments of child psychiatric disorders and Alliance of the Mentally Ill, the 1999 Hu- As a clinician and pediatric psycho- more than 65 peer-reviewed articles and these findings are then incorporated into manitarian Award from Marymount Man- pharmacologist, Dr. Koplewicz evaluates chapters on child and adolescent psychia- state-of-the-art clinical care. To support this hattan College and the 2000 American 100 new patients a year from all over the try, Dr. Koplewicz is also the author of model, the Center is built around a group of Grand Hope Award from the Aprica world. Castle Connolly Medical Ltd. has several books, including the textbook De- research Institutes with associated clinical Childcare Institute. From the American repeatedly named him one of America's pression in Children and Adolescents arms, a structure that allows the Center to Academy of Child and Adolescent Psy- Top Doctors, as has New York Magazine, (Hardwood, 1993); It's Nobody's Fault: expand its patient population, recruit pa- chiatry, he received the 2002 Catcher in and Good Housekeeping has named him New Hope and Help for Difficult Chil- tients for numerous ongoing research stud- the Rye Award, the 1998 Reiger Service one of "America's Best Mental Health dren and their Parents (Times Books/ ies, and provide "real-world" testing for Award in recognition of his work in the Experts." Viewed as one of the leading Random House, 1996), which received successful controlled-environment findings. development of school-based mental authorities in the field, he frequently ap- the Parent's Choice Award and was a Dr. Koplewicz has recruited some of the health programs, and the 2007 Irving Phil- pears in the media to educate the public "Books for a Better Life" finalist; Child- nation's leading researchers and scientists, ips Award for Prevention, its highest about child mental health issues and to hood Revealed: Art Expressing Pain, Dis- each with stellar reputations and research honor, for his dedication and outstanding help families understand the impact of covery & Hope (Harry Abrams, Inc., accomplishments in their areas of expertise. achievements in the field of child and ado- world events on their children and how 1999); and his most recent work on ado- A graduate of Albert Einstein College lescent psychiatry. best to manage those effects. Radio and lescent depression, More Than Moody: of Medicine, Dr. Koplewicz completed He has served as a member of the Na- television appearances have included NBC Recognizing and Treating Adolescent De- his psychiatric residency at New York tional Board of Medical Examiners and as Today, National Public Radio, Good Morn- pression (Putnam, 2002).

Our Next Deadline Date is September 15th - Mark Your Calendar Our Theme: “Understanding and Treating Autism Spectrum Disorders” See Page 3 For Our Annual Calendar PAGE 52 AUTISM SPECTRUM NEWS ~ FALL 2008

IMFAR Conference from page 7 Many of the genetic presentations at has provided a forum for international first symposium examining the relation- this year’s IMFAR actually took advan- research collaboration in autism epidemi- ship between autism and the immune sys- “CHAMACOS” which follows mothers in tage of the variable nature of autism, util- ology, aimed to better our understanding tem. Lisa Croen, Ph.D., a researcher with California who have received high levels izing either the similarities or differences of autism etiology and natural history Kaiser Permanente, reported that some of pesticide exposure. She assessed expo- in individuals with autism as a way to across the globe. Approximately 70 epide- autoimmune diseases such as food aller- sure through biological measures and self identify genes involved in the disorder. miologists and clinicians convened the gies and rhinitis are co-morbid conditions reports, and followed children from birth For example, a collaborative group of fourth annual IAEN meeting at IMFAR. in autism, and Paul Patterson, Ph.D., pro- through development and examined the researchers from Vanderbilt University As one of the results of this meeting, fessor of biology at the California Insti- presence of PDD through assessment on and Massachusetts General Hospital for many of the representatives from coun- tute of Technology, demonstrated that the child behavioral checklist. Her results Children showed an increased association tries that maintain large, population-based maternal infection, which results in the indicated that almost 6% of these children between the gene MET and subjects with health registries joined together to form a elevation of cytokines in the fetal environ- went on to develop symptoms of PDD, autism who also presented with co- workgroup to develop a multi-national ment, may be a risk factor for develop- and that in many of these children, a ge- occurring gastrointestinal symptoms. Val- database that will allow for ambitious, mental disorders. The activation of neuro- netic mutation may account for suscepti- erie Hu, Ph.D. from George Washington previously unfeasible research projects. glia in the brain of autistic patients was bility to pesticides. This gene, abbreviated University displayed a very novel ap- Initial studies stemming from this project discussed by Carlos Pardo, M.D. (Johns PON, is responsible for detoxification of proach to reducing the heterogeneity of will look at associations between autism Hopkins University), pointing to a role for pesticides. Other research has studied the autism by first using exploratory statisti- and pre- and peri-natal exposure to poten- the innate immune response, though this PON gene and found an association in cal techniques on diagnostic ADI-R data tial environmental risk factors. Another role is still undefined and requires addi- families affected with autism, and the from AGRE subjects that allowed her to focus of the meeting was to outline the tional investigation. William Johnson, early finding by the Eskenazi group will identify four different “types” of individu- challenges and propose solutions to stan- M.D. (UMDNJ) presented preliminary be replicated and explored further. als with autism that grouped naturally dardizing epidemiologic methodology research which found that certain MHC In contrast to Dr. Eskenazi’s use of together based on their symptoms. She prior to initiating the studies. Overall, the class II molecules may be risk factors, but direct data collection on individual sub- then measured gene expression profiles of presentations of autism epidemiology which interestingly appear to act on the jects, Dr. Roberts presented his data pub- individuals from each classification, find- studies in the developing world fueled the mother rather than the child with autism. lished earlier this year in Environmental ing clear genetic differences between each discussion of approaches to characterizing Other data discussed at this exciting sym- Health Sciences that examined the rate of of the four autism groups and controls. and diagnosing autism across culturally posium involved studies on the adaptive autism and pesticide exposure using “Through careful consideration of specific diverse settings and measuring the preva- immune response, and how the results of purely administrative data, which is avail- autism phenotypes, researchers are making lence of disorder in these territories such studies have been variable. The sym- able almost exclusively in the U.S. significant strides in identifying genetic risk thereby improving much needed re- posium presenters concluded that the full through the California DDS system and factors in autism,” said Andy Shih, Ph.D., sources. range of immune functions in individuals geographic information systems. Al- VP of Scientific Affairs for Autism Speaks. with autism is one area that absolutely though this data provides a unique oppor- “These genetic risk factors will lead to Biology requires further exploration to determine tunity to examine different exposures and knowledge of the biological pathways that any contributions to the condition. their developmental outcomes, Dr. Rob- have been impacted in autism.” For those studying the biology of au- erts also carefully outlined the weaknesses tism, the meeting offered symposia and Neuropathology: Christoph Schmitz, and limitations of this design. He found Multiple causes: The conference also workshops on topics ranging from brain M.D. at Maastricht University in the that linking exposure of pesticides included a talk by Francesca Happe, Ph.D. imaging to animal models to immunol- Netherlands and Jerzy Wegiel, Ph.D. at through agricultural applications with who argued that, except in rare cases, it is ogy. One of the primary biological hy- the NY Institute for Basic Research pre- birth record data supported a link between unlikely that the full syndrome of autism potheses of autism highlighted by several sented the first results of a multiyear neu- organochlorine exposure in the first tri- can result from a single cause. She based at the meeting was the concept that autism ropathology study termed the Brain Atlas mester of pregnancy. A number of con- her argument on twin studies that suggest may be the result of “synaptic” dysfunc- Project. Autism Speaks’ Autism Tissue founding factors make this an interesting that largely nonoverlapping genes acting tion. Synapses are the parts of nerve cells Program (ATP) began the Brain Atlas study which needs to be replicated further, on each of the separate traits of autism that are responsible for transferring infor- Program in 2002 with the objective of especially since the number of affected (social impairments, language impair- mation from cell to cell. Keynote pre- deciphering the neuropathological fea- children in the highest exposure group ments, repetitive behaviors). She noted senter Thomas Bourgeron, Ph.D. dis- tures of autism in multiple brain areas in was relatively low. However, the pairing that many individuals can exhibit one of cussed discoveries from his and other order to provide us with important miss- of these final two presentations, each us- these traits in isolation. In fact, one impor- laboratories that have implicated muta- ing information about how autism impacts ing different approaches to examine the tant implication of her argument is that tions in several “synapse” genes in au- brain structure. Initial results reported by same question, illustrated the absolute many people who may have isolated im- tism. Such genes include SHANK3, neu- the investigators revealed substantial requirement for multiple parallel ap- pairments in one domain, such as social roligin, and neurexin, all of which encode brain cell size differences according to the proaches to studying gene x environment functioning, may not receive the clinical for proteins that work together to make age of the donor. The youngest brain do- interactions in autism. services they need. John Constantino, synapses properly operate. nors with autism (age 4-7) had smaller “Several groups are exploring the in- Ph.D. presented a related perspective. He Such results not only help direct ge- neurons by up to 43% in certain brain teraction between a genetic susceptibility noted that, when autism runs in families neticists toward studying other “synapse” regions compared to older donors with and environmental factors. Understanding (familial autism), it is common genes as potential autism risk factors but, and without autism. The investigators also how subgroups of children may be vulner- (significantly more so than in the general most importantly, they are beginning to reported preliminary findings on the fusi- able to specific environmental risk factors population) for clinically-unaffected male shed light on the underlying biological form gyrus, the site of face processing in is critical for discovering the causes of au- family members to exhibit features of features of autism. The concept of altered the brain, which imaging studies have tism and for developing prevention meth- autism, but not the full autism syndrome. synapse functioning is consistent with the shown to be less active in individuals with ods,” said Geraldine Dawson, Ph.D., Chief This may not be true for females or for “functional underconnectivity” theory of autism than control subjects. So far using Science Officer, Autism Speaks. non-familial autism. This is important autism, which hypothesizes that nerve 7 postmortem brains from patients with Genetics: This year’s IMFAR meeting because it suggests that parents who have cells are not connected together as normal autism and 10 controls, they have found highlighted both the complexity of the one child with autism should be vigilant and that the net result is difficulty in pass- significant reductions in neuron densities disorder and the international nature of for mild impairments in a second child. ing information between parts of the that in theory could anatomically account genetic research. Using Autism Speaks’ Dr. Constantino also showed how quanti- brain, leading to the unusual behaviors for the abnormal function found in this AGRE samples, researchers from Japan tative characterization of the autism collectively called autism. Several groups brain area. presented the first results to suggest an symptoms can aid in the search for core presented data expanding upon the evi- The Brain Atlas Project will continue autism association with a new set of genetic and neurobiologic components of dence for functional connectivity deficits through 2009 until all regions of 28 donor genes, called ROBO, involved in neurode- autistic syndromes. in autism by using EEG to read electric brain hemispheres have been analyzed. velopment. From the other end of the signals between brain regions, finding The ATP Tissue Advisory Board mem- globe, a group of researchers at the Ice- International Autism Epidemiology them to be altered. Additionally, prelimi- bers attending the meeting urged the au- landic genomic company deCode, Inc. Network (IAEN): One important tech- nary data from some of the first studies to tism community to support brain donation showed an association of copy number nique often used to parse genetic and en- use the newest brain imaging technology, to further the exploration of brain devel- variations in specific chromosomal re- vironmental risk factors is epidemiology. Diffusion Tensor Imaging, revealed struc- opment. Family members and unaffected gions, validating recent findings in previ- Since its inception in 2004, the Interna- tural irregularities in the white matter, the individuals are encouraged to register to ous large scale genetic studies such as the tional Autism Epidemiology Network part of the brain that ferries the electrical be brain donors as well and can get more infor- Autism Genome Project. “Because of the (IAEN) has developed into a unique and signals from one region of the brain to mation at www.autismtissueprogram.org. An complexity of autism, independent confir- expansive partnership of investigators another. This is again suggestive of con- important step in this direction was the launch mation of previous results is one of the representing nearly 30 countries and spe- nectivity problems in the brains of indi- of the UK brain donation program to com- most important outcomes of such large cializing in various areas of autism re- viduals with autism. plement the one in the U.S. “Research is international conferences,” explained search and treatment. With the support of finally coalescing to provide testable Geraldine Dawson, Ph.D. Autism Speaks Autism Speaks and the Centers for Dis- Immunology: Another major step for- Chief Science Officer. ease Control and Prevention, the network ward this year was that IMFAR hosted its see IMFAR Conference on page 53 AUTISM SPECTRUM NEWS ~ FALL 2008 PAGE 53 IMFAR Conference from page 52 may be indicative of ASD or part of a Treatment tions created to assist those impacted by genetic liability. autism. These ranged from interactive hypotheses that can bring us to a biologi- Not long ago, autism was thought not visual scheduling systems to a variety of cal understanding of autism,” concluded Motor reflexes: Many parents have to be treatable. Many parents were told video games that were developed for as- Sophia Colamarino, Ph.D., VP of Re- questioned whether, in hindsight, unusual there was very little that could be done to sessing and enhancing cognitive strengths search for Autism Speaks. motor activity may have been one of the change the course or outcome for their and weaknesses, improving face process- earliest indications of their child’s disabil- child diagnosed with an ASD. Fortu- ing and emotion recognition, and assess- Diagnosis ity. A group led by Carole Samango- nately, this is no longer the case as evi- ing and teaching language. Personal digi- Sprouse, Ed.D. from George Washington denced by numerous presentations given tal assistant (PDA) technology was ex- Baby Siblings Research Consortium: University is exploring whether early mo- in the area of treatment and intervention. plored in teens with autism to teach flexi- Several investigators studying infant sib- tor tone, as measured through a standard Treatments for autism generally fall bility, feelings and sensory states. Other lings of children with autism met prior to test of primitive motor reflex known as into two categories, biomedical and be- presenters showed detailed virtual reality IMFAR to discuss their findings on early the head tilt reflex (HTR), can be used to havioral, and can vary by country. Some platforms specially developed to study identification and new methods for treat- accurately identify infants with neurode- of the biomedical treatments discussed at how children with autism respond to in- ing at risk infants. Mark Johnson, Ph.D., velopmental disorders when coupled with this year’s IMFAR included pharmacol- creasingly more complex visual environ- Mayada Elsabbagh, Ph.D., and Geraldine the accelerated head growth already de- ogical, complementary and alternative ments, with hopes that such carefully Dawson, Ph.D. led a workshop titled scribed. Their goal is to increase the like- medicine, and dietary interventions. Be- regulated environments may ultimately be “From Neuroscience to Intervention: Pro- lihood that doctors can easily spot infants havioral studies covered such diverse top- used to understand and reduce sensory gress in the study of infants at-risk for at-risk for an ASD or other neurodevelop- ics as theory of mind training, vocal imi- overload. New research is also beginning autism.” Scientists discussed new ap- mental disorders during well-baby medi- tation training, sleep hygiene education, to focus on how robotic therapists and 3D proaches to detecting the first signs of cal checkups. pivotal response and discrete teaching virtual peers can be used to teach affective autism in infants using eye-tracking meth- The HTR is an extraordinarily simple methodologies, and social skills training. language intonation and make social com- ods, structural and chemical brain imag- exam designed to test the reflex normally One discussion presented a retrospective munication more motivating for this ing and electrophysiology. It was noted developed at 9 months of age which main- analysis of cases in which children with population. These burgeoning and innova- that infant sibs who go on to develop au- tain one’s head vertical when tilted off autism achieved recovery status (lost their tive uses of technology carry great prom- tism are more likely to exhibit accelera- midline. The researchers tracked infants original diagnosis of autism). With new ise for accelerating and enhancing the tion in head growth starting at about 4-6 that failed to develop the HTR and who groups forming to address the medical pace of autism research and treatment in months. Infants with this unusual head underwent unusual acceleration in head aspects of autism (such as the Autism the years to come. growth trajectory often exhibit behavioral growth during the first year of life. Out of Speaks Autism Treatment Network and symptoms emerging at about 8-10 216 babies screened, 21 infants were Clinical Trials Networks), it is anticipated Progress and Themes months, which include a failure to re- flagged for “at risk” status due to these that more research will become available spond to name, distress reactions, passiv- two criteria and were given full neurode- targeting specific symptoms associated The most often repeated theme to this ity, a lack of eye contact and communica- velopmental evaluations. In none of these with autism. year’s IMFAR meeting was the incredible tive babbling, and poor imitation skills. cases did the parents or pediatricians have amount of recent progress the field of The workshop also focused on new any previous suspicions. Their prelimi- Family Services: As the population of autism has made. This sentiment was ech- approaches to early intervention with in- nary data suggests that the combination of adolescents and adults with autism is rap- oed perhaps most eloquently by the re- fants and toddlers who exhibited emerg- increased head circumference and HTR idly growing, more researchers are begin- cipient of the 2008 Autism Lifetime ing signs of autism. Although several dif- may be an indicator of possibly both ASD ning to explore issues that affect older Achievement award, Isabel Rapin, Ph.D., ferent approaches were highlighted, most and developmental language disorders. people with autism including puberty, a pioneer of autism research whose career of these interventions shared certain com- Given the nature of the test (quick, easy, a sexuality, substance abuse and social rela- has extended almost the entire history of mon features. Most were parent-delivered very early indicator, and at no extra cost tionships. Researchers from North Shore autism. Dr. Rapin was praised by her col- and focused on facilitating early social- to the doctors or parents), the investiga- Long Island Jewish Hospital discussed leagues for her several lifetimes worth of communicative skills within an affec- tors are continuing to pursue whether the their employment of visual supports, role achievements for autism. In her accep- tively-rich parent-infant interaction. The "tilt test" and acceleration in head cir- play, cartoons, social stories, and video tance speech, Dr. Rapin reflected upon the hope is that by identifying infants at risk cumference may provide early modeling in weekly group sessions. Issues 60 years since autism was first clinically and providing early intervention before "biomarkers" for a subgroup of infants at regarding sexuality, development, hy- described and provided commentary the onset of the full syndrome, autism risk for developing autism or other neuro- giene, safety and dating behavior were about how our understanding of autism symptoms can be reduced or even pre- developmental disorders. addressed in groups of adolescents with has changed and grown during her career. vented. autism, as well as in groups of parents, From the initial psychological theories, to During IMFAR eleven sites from the Interactive Autism Network (IAN): resulting in improved comfort for the par- the advent of genetic research, through the Baby Siblings Research Consortium Other current research for assessing the ticipants in discussing these sensitive top- explosion of information about brain (BSRC) reported their findings. They special needs and interests of children ics and achievement of personal goals function from imaging studies, she cred- compared head growth in 761 high-risk with autism, and parental experiences such as learning to set boundaries. Re- ited most of the advances in our under- infants (each with an older sibling with a raising a child with autism, utilizes the search is ongoing in terms of further cur- standing of autism to the rise of the many confirmed diagnosis of ASD) and 400 low internet and web-based methods. The In- riculum development and evaluation. unforeseen technological advances exhib- -risk infants (no family history of ASD). teractive Autism Network (IAN; Several researchers also addressed ited at the meeting. Preliminary analyses indicate that high www.IANproject.org), developed by a educational issues such as teacher training As a fitting close to an extraordinary risk infants who are subsequently diag- team at Kennedy Krieger and funded by and integrating students with autism into a week for autism, Autism Speaks UK or- nosed with ASD show more rapid growth Autism Speaks, is collecting information general education environment. Expand- ganized a reception for researchers, par- in head circumference in the first 2 years online from families of children with ing the quality of evidence-based research ents, and legislatures at the House of of life than non-diagnosed high-risk and ASDs throughout the U.S. The team illus- in service delivery is a critical need and Commons, hosted by Janet Dean, MP, low-risk infants, although the absolute trated the breadth and depth of their data several researchers presented their initial chair of the All-Party Parliamentary differences are small. Further analyses by presenting on a variety of key autism findings on the efficacy of specific com- Group on Autism. Autism Speaks U.S. will help determine whether subgroups of research topics, each based on informa- munity-based service programs. Some was represented at this special event by high-risk infants exhibit more pronounced tion by IAN families. Through this, au- researchers are now studying ways in Mark Roithmayr, President; Glenn Trin- head growth early in life, and the potential tism researchers learned about resources which families access services and the gali, Executive Vice President of Fund- utility of this finding for early detection. IAN can provide to facilitate their crucial strategies they use to get them. Another raising and Development; Sophia Cola- In addition to collaborative projects, work. These free resources include access theme among the service research presen- marino, Vice President of Research, and members of the BSRC each presented to the IAN dataset (currently containing tations included evaluations of autism Dana Marnane, National Director of preliminary data on siblings from age 3-9 information shared by families of over resources including materials for parents Communications and Marketing. Autism months of age. Researchers are using so- 8,000 children with an ASD); the launch of newly diagnosed children and compre- Speaks UK Chief Executive Hilary Gilfoy phisticated analysis of eye tracking data of a new online community and work- hensive treatment programs. Researchers addressed the group highlighting the great and analysis of specific neurophysiologi- space for autism researchers; and assis- explored the use of technology-related strides being made in research around the cal measures to interpret very early tance finding qualified participants for products to aid in the delivery of services. world and in the UK, including the break- changes in attention, including shifting of researchers’ local studies. With the excep- throughs achieved by the Baby Siblings attention and joint attention. In fact, a few tion of subject recruitment, which is of- Technology : One exciting theme that Research Consortium and the Autism researchers referred to the effect as fered only to U.S. researchers, these ser- received increased attention this year was Genome Project. Gilfoy’s overall message “sticky” attention, as they discovered vices are available to autism researchers the many ways technology can be used to to the crowd was one of hope. “Only two there are subtle differences in the duration throughout the world. Many international provide novel forms of assessment and years ago, the honest answer to the ques- of the gazes away from the mother’s face researchers at IMFAR learned about IAN intervention. Researchers from the U.S., tion ‘What causes autism?' was ‘We don't in a scene. Some of the differences are for the first time and expressed an eager- U.K., Germany, Greece, and Israel pre- know,’” said Gilfoy. “Now we can say seen in children “at risk” for autism, re- ness to access IAN data for their own re- sented findings on many new technology- that we have explorable hypotheses and gardless of diagnosis, and further research search. related innovations. Highlights included a will better determine if these early signs diverse set of computer software applica- see IMFAR Conference on page 54 PAGE 54 AUTISM SPECTRUM NEWS ~ FALL 2008

IMFAR Conference from page 53 responsibility of the authors. The sponsor of the annual Meeting, the International Help Support our Nonprofit Mission interventions to respond to the first signs Society for Autism Research (INSAR), of autism.” and Autism Speaks take no responsibility Become an Honored Sponsor of “Having a forum where scientists, for its accuracy. Submitted IMFAR ab- clinicians, and parents from around the stracts are reviewed only to ensure that Mental Health News Education, Inc. world can congregate and share findings the authors will be presenting empirical and perspectives has really helped move data and that aims and conduct of the the field forward,” remarked Geraldine study, as far as can be ascertained, are Dawson, Ph.D., Chief Science Officer, consistent with international ethical Benefactor: $25,000 Autism Speaks. “There is an openness to guidelines for scientific research exploring many different possible causes (Declaration of Helsinki). Acceptance of Includes a custom designed multi-page section including ads and article space of autism, including both genetic and an abstract for presentation at the Meet- in 4 quarterly issues of Mental Health News, Salud Mental, or Autism Spectrum News. environmental factors, and an increasing ing does not represent an endorsement by We will also ship as many copies of the newspaper as you need for distribution emphasis on new treatments. People from the Society of the quality or accuracy of to clients, staff, board members, and satellite programs. around the world are joining together to the data and their interpretation, which This package has a value of over $15,000 if purchased as separate orders. accelerate the field of autism research. It judgment must await publication in a was wonderful to be a part of it.” peer review journal. Readers should rec- To read individual abstracts, please ognize that study data presented at meet- visit http://imfar.confex.com/imfar/2008/ ings is often preliminary and in some Platinum: $10,000 webprogram/start.html. Data presented cases speculative, and that findings and at the annual International Meeting for conclusions have not undergone the rig- Includes a full page ad and article space in 4 quarterly issues of Autism Research (IMFAR) is the sole ors of a true peer review process. Mental Health News, Salud Mental, or Autism Spectrum News. This layout is designed to give your organization a dramatic two-page spread in the newspaper. We will also ship you several bundles (50 copies per bundle) of the newspaper The Right School from page 17 their child. for distribution to clients, staff, board members and satellite programs. Finally, does the school help families This package has a value of over $5,000 if purchased as separate orders. of corrective feedback, there should be to learn how to use interventions in the three to five instances of praise. home setting? Most schools, will at mini- Also, look to see if staff and students mum, offer seminars and trainings that are generally happy, but keep in mind, are open to families. However, not all Gold: $5,000 children with autism are not happy all of programs will invite parents into the the time. Are both sets of people smiling? classroom to practice techniques with Includes a half page ad and article space in 4 quarterly issues of Do the activities seem fun and exciting? staff or be open to coming out to a stu- Mental Health News, Salud Mental, or Autism Spectrum News. We will also Are the students allowed to make choices dent's home to show parents how to im- ship you several bundles (50 copies per bundle) of the newspaper for distribution throughout each activity during the plement interventions in that setting. In school day? Research has shown that the the end, good schools will recognize that to clients, staff, board members and satellite programs. use of preferred items during instruction learning doesn't end at 3:00 p.m., and that This package has a value of over $3,000 if purchased as separate orders. and giving students the opportunity to continuity across school and home will make choices leads to higher rates of greatly benefit each child. learning and fewer behavioral issues. As parents face a variety of difficult Silver: $2,500 Staff-to-staff communication and op- issues with their child with autism, find- portunities for family involvement, both ing an appropriate school program will in their own child's program planning as enhance the quality of life for the student, Includes a quarter page ad in 4 quarterly issues of well as at the school planning level, as well as their families. The process of Mental Health News, Salud Mental, or Autism Spectrum News. should also be explored. What mecha- finding the best program for the child We will also ship you 1 bundle (50 copies) of the newspaper for distribution nisms exist to allow staff to plan and de- may not be easy, but it is well worth the to clients, staff, board members, and satellite programs. velop activities, discuss specific child and effort. Our School Program Evaluation This package has a value of over $1,800 if purchased as separate orders. classroom issues, and meet with families, Form is designed to facilitate this process. clinicians, related service personnel and For more information, please contact administrative staff? Are there formal the authors at Devereux CARES (610-873 mechanisms to solicit parent input and -4930). CARES is an approved private Bronze: $1,000 feedback about school components and school located in Downingtown, PA. It future development? serves students with autism ranging in Will receive special recognition on our special honor roll page Parents should also clarify the school's age from 5 to 21, using applied behavior policy regarding observation procedures analysis instructional techniques and Advisor: $500 and policies of students before enrolling natural environment teaching.

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