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8 page on Interview Cartwright see people of all ages with ASD. ASD. with ages all of people gin with early detection and interventions interventions and detection early with gin ments and working toward an improved improved an toward working and ments
create new and innovative programs for for programs innovative and new create services within the YAI Network. We be- We Network. YAI the within services and spirited optimism on clinical treat- clinical on optimism spirited and
families cope with the high level of stress stress of level high the with cope families sionals from across the YAI Network to to Network YAI the across from sionals A: We take a “lifespan approach” to all our our all to approach” “lifespan a take We A: Cartwright for sharing his knowledge knowledge his sharing for Cartwright
Often, we provide interventions to help help to interventions provide we Often, We’re bringing together talented profes- talented together bringing We’re
tive treatments. We are grateful to Dr. Dr. to grateful are We treatments. tive
cate for themselves and their children. children. their and themselves for cate ized socialization and arts programs. programs. arts and socialization ized families. families. ensure that they receive the most effec- most the receive they that ensure
so they have the tools they need to advo- to need they tools the have they so ces to offer special- offer to ces servi clinical beyond to people of all ages with autism and their their and autism with ages all of people to adult children on the autism spectrum to to spectrum autism the on children adult
vide support and information for families families for information and support vide seizure disorders). We’re also moving moving also We’re disorders). seizure grams that the YAI Network can provide provide can Network YAI the that grams families with young, adolescent and and adolescent young, with families
involved in that person’s life. We pro- We life. person’s that in involved ioral, and neurological issues (such as as (such issues neurological and ioral, Q: I am impressed with the range of pro- of range the with impressed am I Q: wright also offers helpful advice to to advice helpful offers also wright
whole family — all the people who are are who people the all — family whole ments of co-existing emotional, behav- emotional, co-existing of ments
mation and referral program. Dr. Cart- Dr. program. referral and mation
only affect an individual. It affects a a affects It individual. an affect only and behavioral therapies, as well as treat- as well as therapies, behavioral and LINK YAI the and Center Autism the process of scheduling appointments. appointments. scheduling of process the infor-
We also know that autism does not not does autism that know also We treatments such as speech, occupational occupational speech, as such treatments grams and services provided by the YAI YAI the by provided services and grams vices they might need and helped through through helped and need might they vices
trum disorders at each stage of their lives. lives. their of stage each at disorders trum autism spectrum; and then access vital vital access then and spectrum; autism provides an overview of the vital pro- vital the of overview an provides cerns, given information about the ser- the about information given cerns,
serve the needs of people with autism spec- autism with people of needs the serve identifying early signs of being on the the on being of signs early identifying the YA Network in New York City, City, York New in Network YA the step; they will be asked about their con- their about asked be will they step;
residential and recreation programs. We We programs. recreation and residential are able to benefit from our expertise in in expertise our from benefit to able are LINK YAI call should children Director of the YAI Autism Center at at Center Autism YAI the of Director as a first first a as
grams, employment training and placement, placement, and training employment grams, sessment and treatment services. Families Families services. treatment and sessment on how to obtain autism services for their their for services autism obtain to how on interview, Dr. Charles N. Cartwright, Cartwright, N. Charles Dr. interview,
family support, health care, adult day pro- day adult care, health support, family R children access to high level clinical as- clinical level high to access children Families who are looking for information information for looking are who Families trum disorder (ASD) deserves. In this this In deserves. (ASD) disorder trum
and treatment for children and adolescents, adolescents, and children for treatment and families with young, adolescent and adult adult and adolescent young, with families mental disabilities and their families. families. their and disabilities mental nosed with an autism spec- autism an with nosed
birth to age 5 through clinical assessment assessment clinical through 5 age to birth A: The YAI Autism Center provides provides Center Autism YAI The A: ropolitan region for people with develop- with people for region ropolitan something every person diag- person every something
vention and preschools for children from from children for preschools and vention
and programs in the New York City met- City York New the in programs and clinical treatment services is is services treatment clinical
community-based programs are early inter- early are programs community-based with ASDs? ASDs? with rmation on services services on rmation info relevant current, eceiving the highest quality quality highest the eceiving
Among the YAI Network’s more than 450 450 than more Network’s YAI the Among what services are provided for people people for provided are services what
vice at the YAI Network that provides provides that Network YAI the at vice
ductive as possible throughout their lives. lives. their throughout possible as ductive Q: What is the YAI Autism Center and and Center Autism YAI the is What Q:
the intake, information and referral ser- referral and information intake, the
Autism Spectrum News News Spectrum Autism LINK able people to be as independent and pro- and independent as be to people able
(1-866-2-YAI-LINK or [email protected]), [email protected]), or (1-866-2-YAI-LINK
Associate Director Director Associate services, we work very closely with YAI YAI with closely very work we services, services that maximize potential and en- and potential maximize that services ASD and their families. families. their and ASD
By David H. Minot, BA BA Minot, H. David By In order to improve access to our autism autism our to access improve to order In at a young age, and then continue to offer offer to continue then and age, young a at quality of life for people of all ages with with ages all of people for life of quality
Director of the Autism Center at the YAI Network Network YAI the at Center Autism the of Director
with Charles N. Cartwright, MD MD Cartwright, N. Charles with Interview News Spectrum Autism An
24 page on Psychologist see most common orientations are cognitive cognitive are orientations common most ated with this diagnosis. diagnosis. this with ated the way of treatment guidance to a de- a to guidance treatment of way the
training backgrounds and approaches. The The approaches. and backgrounds training prove skills and handle problems associ- problems handle and skills prove have Asperger Syndrome,” and little in in little and Syndrome,” Asperger have
antecedents and consequences of behaviors behaviors of consequences and antecedents Psychologists have a wide variety of of variety wide a have Psychologists obtaining the treatment necessary to im- to necessary treatment the obtaining of such diagnosis may range from, “you “you from, range may diagnosis such of
Behavioral therapists tend to examine the the examine to tend therapists Behavioral review some of the considerations for for considerations the of some review neurologist, or a psychologist. The result result The psychologist. a or neurologist,
with children and adults on the spectrum. spectrum. the on adults and children with May Provide Provide May propriate professionals. This article will will article This professionals. propriate a psychiatrist, a a psychiatrist, a by conducted typically
intervention, as is so frequently the case case the frequently so is as intervention, Interventions Psychologists Psychologists Interventions tailed treatment plan and referrals to ap- to referrals and plan treatment tailed Diagnosis of Asperger Syndrome is is Syndrome Asperger of Diagnosis
limited usefulness if basic skills still need need still skills basic if usefulness limited
However, these approaches may have have may approaches these However, Diagnosis and Evaluation Evaluation and Diagnosis
they interact with important others. others. important with interact they
psychological characteristics and how how and characteristics psychological liver needed treatment? treatment? needed liver
what led them to develop their current current their develop to them led what determine if that person can capably de- capably can person that if determine
adults with AS if they want to explore explore to want they if AS with adults type of professional is needed and how to to how and needed is professional of type
sionally be useful for adolescents and and adolescents for useful be sionally individuals and families determine what what determine families and individuals
oaches may occa- may oaches appr psychodynamic with having Asperger Syndrome. How do do How Syndrome. Asperger having with
are not productive. Psychoanalysis and and Psychoanalysis productive. not are roles in addressing the issues associated associated issues the addressing in roles
clients change thoughts and behaviors that that behaviors and thoughts change clients of professionals who may play different different play may who professionals of
tween thoughts and feelings and helps helps and feelings and thoughts tween W gist? There are many kinds kinds many are There gist?
AS as it addresses the relationship be- relationship the addresses it as AS about selecting a psycholo- a selecting about
n and adults with with adults and n childre for approaches making the right decision decision right the making
apy (CBT) is one of the most effective effective most the of one is (CBT) apy hat are the key elements in in elements key the are hat
work. Typically cognitive behavior ther- behavior cognitive Typically work.
when choosing a therapist to do individual individual do to therapist a choosing when
Center for Education and Training Training and Education for Center need should be primary considerations considerations primary be should need
Bank Street College and Asperger Asperger and College Street Bank a little of each. The age and treatment treatment and age The each. of little a
itive Diversity Diversity itive Cogn for Institute psychoanalytic, and eclectic, that is using using is that eclectic, and psychoanalytic,
By Lynda Geller, PhD, Director Director PhD, Geller, Lynda By behavioral, behavioral, psychodynamic, psychodynamic, behavioral, behavioral,
Making the Right Decision When Choosing a Psychologist Psychologist a Choosing When Decision Right the Making
Understanding and Accessing Clinical Treatment Services Services Treatment Clinical Accessing and Understanding
SPRING 2010 2010 SPRING FROM THE LOCAL, STATE, LOCAL, THE FROM AND NATIONAL NEWS SC NEWS NATIONAL AND VOL. 2 NO. 4 4 NO. 2 VOL. ENE
S A N INFORMATION, OF SOURCE TRUSTED YOUR EDUCATION, ADVOCACY, AND RESOURCES RESOURCES AND ADVOCACY, EDUCATION,
PECTRUM UTISM EWS
TM
PAGE 2 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SPRING 2010 The Autism Spectrum News The Mental Health News Education, Inc. Editorial Board Board of Directors
Cindy Alterson, PhD, BCBA, Principal and Program Director Chairman Devereux Millwood Learning Center Peter Beitchman, DSW, Executive Director The Bridge Joel Bregman, MD, Medical Director Fay J. Lindner Center for Autism and Developmental Disorders Vice-Chairman North Shore - Long Island Jewish Health System Barry B. Perlman, MD, Director of Psychiatry
Saint Joseph’s Hospital Joseph D. Buxbaum, PhD, Director Seaver and New York Autism Center of Excellence Secretary Mount Sinai School of Medicine Peg Moran, LMSW, Senior Vice President F●E●G●S Health and Human Services System Stephen E. Freeman, Chief Operating Officer YAI Network Treasurer
Lynda Geller, PhD, Director, Institute for Cognitive Diversity Alan Trager, LCSW, Executive Director & CEO Westchester Jewish Community Services Bank Street College of Education Members of The Board Ami Klin, PhD, Director, Autism Program Yale Child Study Center Constance Y. Brown, MPA, Vice President, Corporate Community Relations Institute for Community Living
Harold S. Koplewicz, MD, Executive Director Peter C. Campanelli, PsyD, President & CEO Nathan Kline Institute for Psychiatric Research Institute for Community Living
Carmen Collado, LCSW, Director of Immigrant and Latino Services Cecelia M. McCarton, MD, Founder and Executive Director Jewish Board of Family & Children’s Services The McCarton Foundation The McCarton School (for Autism) Alan Eskenazi, MA, CPHQ, Vice President, Quality and Regulatory Affairs Saint Vincent Catholic Medical Centers
Judith R. Omidvaran Donald M. Fitch, MS., Executive Director Parent Advocate, New York The Center For Career Freedom
Theresa Pirraglia, Co-Founder and Board Member Michael B. Friedman, LMSW Public Policy Consultant The Foundation for Educating Children with Autism
Mary Hanrahan, LCSW, Government Relations Specialist John C. Pomeroy, MD, Founding Director New York Presbyterian Hospital Cody Center for Autism and Developmental Disabilities Stony Brook University Medical Center Jorge R. Petit, MD, President Quality Healthcare Solutions Group
Pat Schissel, LMSW, President Theresa Pirraglia, Co-Founder and Board Member Asperger Syndrome and High Functioning Autism Association The Foundation for Educating Children with Autism
Janet Z. Segal, LCSW, Executive Vice President Alison Singer, President Four Winds Hospital Autism Science Foundation Alison Singer, President Douglas K. Stern, Esq. Autism Science Foundation
Abrams, Fensterman, Fensterman, Giselle Stolper, EdM, Executive Director Eisman, Greenberg, Formato & Einiger, LLP Mental Health Association of New York City
Richard Swierat, Executive Director Carolyn Reinach Wolf, Esq. Abrams, Fensterman, Fensterman, Eisman, Greenberg, Formato & Einiger Westchester ARC Executive Staff Fred Volkmar, MD, Director Yale Child Study Center Ira H. Minot, LMSW, Founder & Executive Director 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 ~ SPRING 2010 visit our website: www.mhnews-autism.org PAGE 3 Autism Spectrum News - Table of Contents
Understanding and Accessing From the Publisher Clinical Treatment Services 6 Choosing the Right Path Towards Treatment Best Practices 1 Making the Right Decision When Choosing a Psychologist The Autism Spectrum News Desk 1 Autism Spectrum News Interviews Dr. Charles Cartwright 7 Court Denies All “Thimerosal Causes Autism” Test Cases 8 Addressing the Needs of Spanish-Speaking Families 7 Pfizer Launches New Autism Research Group 11 Understanding ABA Intervention 7 Autism Center Publishes Autism Manuals for Educators 13 Parent-Implemented Interventions for Children with ASD Autism Spectrum News 14 Using Pre-Post Test Designs to Assess Treatment Effectiveness Theme and Deadline Calendar
15 My Grandson May Have Autism - How to Discuss With Family Summer 2010 Issue: “Helping Families Cope With Stress” Deadline: June 15, 2010 17 Autism Science Foundation 2010 Award Recipients Announced
Fall 2010 Issue: 19 Introducing the JCCA Compass Project “Addressing the Growing Needs of Adults” Deadline: September 15, 2010 20 Interagency Task Force on Autism Issues Recommendations Winter 2011 Issue: “Mental Health Treatments for Autism” 21 Moving from Preschool to School-Age Special Education Deadline: December 15, 2010
23 Robin’s Voice - A Resilient Mom’s Commentary on Autism Spring 2011 Issue: “Navigating the Legal System” 25 Internet Resources for Science-Based Treatment of ASDs Deadline: March 15, 2011
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Choosing the Right Path Towards Clinical Treatment Best Practices
By Ira H. Minot, LMSW New treatments and interventions are referral for possible evaluation and ser- Founder and Executive Director currently being tested and many of these vices, because this may waste valuable Mental Health News Education, Inc. show promise. There are lifelong oppor- time during which intervention can be tunities for your child, adolescent or most beneficial for your grandson.” adult with an ASD to participate in effec- In addition to the articles mentioned, he theme of this issue of Autism tive interventions. there are many others that address the Spectrum News is “Understanding On page 13, Dana Levy, PsyD and latest advances in autism science by ex- and Accessing Clinical Treat- Elizabeth Roberts, PsyD, of the NYU perts in the field of autism that we hope ment Services.” This topic is Child Study Center profile two evidenced- will inform and inspire you. Let me con- Tsomething that all parents must struggle clude by telling you about our exciting based, parent-implemented behavioral in- with when their child receives an autism tervention programs that address both the roundup of themes in the upcoming quar- diagnosis. It is at this moment when the need for early intervention and methods terly calendar of Autism Spectrum News. journey of learning and discovery about for reducing non-compliant and other Our summer issue theme will be “Helping the many different treatment options maladaptive behaviors that interfere with Families Cope With Stress.” Our deadline available begins. learning. “When parents are successful at for articles and advertising for this impor- Many parents probably have heard of learning and can offer the required degree tant issue is June 15th. autism and may know someone with a of intensity of therapy, these approaches Our calendar continues with our fall child on the spectrum, but it is likely may offer a more cost-effective and natu- issue which will focus on “Addressing the that they don’t have an understanding of ralistic method of teaching skills and re- Growing Needs of Adults.” Next winter what types of clinical treatment options ducing problem behaviors than those that we will take an in-depth look at “Mental are available for their child. More im- rely on service delivery by professionals. Health Treatments for Autism” and next portantly, parents of a newly diagnosed For these families, ESI and PCIT are two spring our theme will be “Navigating the child with an autism spectrum disorder potentially valuable ways to help their Legal System.” may be aware of the great amount of Ira H. Minot, LMSW children.” We would like to invite everyone to misleading, ineffective, and often dan- On page 14, Dr. Thomas Zane, PhD, participate in these exciting upcoming gerous treatment options that should be scientific research, and advocacy review BCBA, Director of The Center for Ap- issues. Our goal is to continue our format avoided. A quick internet search reveals all content in each issue of Autism Spec- plied Behavior Analysis at The Sage Col- of providing evidence-based news, infor- both the proven clinical treatment best trum News to make sure it is trusted, leges focuses on evaluating the effective- mation, education, advocacy, and re- practice options and “snake oil” treat- safe, and proven effective in the treat- ness of autism treatments and understand- sources on a variety of topics of impor- ments offering false promises and prey- ment of autism spectrum disorders. ing what allows a research study to give tance to the autism community. As a ing on vulnerable parents who are will- Please share this invaluable resource valid and believable results to deem a nonprofit organization, we ship thou- ing to try anything to help their child. with other new parents of a child with treatment to be considered evidence- sands of free copies of each issue of Au- With so many conflicting options, how autism so that they too can understand based. “Just because a research study has tism Spectrum News to our growing fam- is a parent supposed to make the right and have access to the trusted informa- been conducted and shows positive ily of autism and mental health organiza- choices to ensure the best quality treat- tion and education they need to ensure changes in some aspects of autism does not tions. For those who may not have the ment in this environment of deception that their child receives the highest qual- necessarily mean that the treatment was opportunity to pick up copies of each and misinformation? ity and most effective clinical treatment responsible for those changes. Since autism issue at our delivery locations, we post If you are reading this, you already services available. is said by some to be a ‘fad magnet,’ par- each entire issue for free on our website: know the answer - you must seek out Continuing on our interview series ents and other consumers must critique any www.mhnews-autism.org. On our web- only trusted resources of proven science- with experts in autism, Autism Spectrum research study that purports to show a posi- site you can subscribe to receive your based information to guide you and your News had the opportunity to sit down tive effect of a treatment and try to deter- own personal hardcopy that will be child down the path of success and effec- with Dr. Charles Cartwright, MD, Direc- mine if the positive changes could be due mailed to your home or office address. tive treatment. Autism Spectrum News is tor of the Autism Center at the YAI Net- to other explanations, or could only be due You can also order our group subscrip- an example of a resource dedicated to work. Dr. Cartwright has a tremendous to the treatment.” tion and receive 50 copies of each issue providing trusted information about amount of experience in clinical treat- Peggy Halliday, MEd, BCBA and for your clients and staff. proven clinical treatment best practices ment and offers helpful advice to fami- David Celiberti, PhD, BCBA-D on page We look forward to hearing from you. for autism spectrum disorders. The arti- lies with young, adolescent and adult 15 offer some invaluable advice and Please e-mail us at [email protected] cles found in each issue of Autism Spec- children on the autism spectrum to en- helpful resources that may help when and tell us what topics are important to trum News are written by experts from sure that they receive the most effective approaching a family member who has a you, so that we can address them in future trusted organizations that provide quality clinical treatments. Dr. Cartwright con- child that may be showing signs of au- issues of Autism Spectrum News. safe and effective treatment services to cludes the interview with a message of tism. “As is the case with many con- young, adolescent, and adult children hope that, “It is never too late to learn cerned family members, you may worry You Are Not Alone with autism spectrum disorders. In addi- and grow and develop. People of all ages that such a discussion may not be well Autism Spectrum News Cares About You tion, our Editorial Board that is made up can improve given the proper type of received. If autism is a possibility, you of leaders in autism treatment services, biological and behavioral treatments. would not want to delay screening and Have a Wonderful Spring Season!
Letter to the Editor
Dear Editor, of Autism Spectrum News. When Dr. pain. This has important clinical and endorphin in children and adolescents Grodberg implies that a significant pro- research implications. Most importantly, with autistic disorder. PLoS One. 2009 4 I want to say that I have been very portion of individuals diagnosed with special attention and extra care should be (8):e5289 impressed with the quality and scope of autism have “high pain thresholds,” he employed to ensure that individuals with Autism Spectrum News. However, I do tends to perpetuate a mistaken idea about autism do not suffer needlessly. Nader R, Oberlander TF, Chambers CT, have a specific issue to discuss. pain in autism. Craig KD. Expression of pain in children The issue concerns the second sen- Several recent studies (see below) Cited Studies with autism. Clinical Journal of Pain. 2004 tence of the otherwise excellent article, have strongly indicated that, while indi- 20(2):88-97. “The Neurobiology of Sensory- viduals with autism often show unusual Tordjman S, Anderson GM, Botbol M, Perceptual Symptoms in Autism” by or reduced expressed reaction to pain, Brailly-Tabard S, Perez-Diaz F, et al. David Grodberg in the Winter 2010 Issue they do not have reduced sensitivity to Pain reactivity and plasma beta- George M. Anderson, PhD AUTISM SPECTRUM NEWS ~ SPRING 2010 visit our website: www.mhnews-autism.org PAGE 7
AUTISM SPECTRUM NEWS DESK
Vaccine Court Denies All Three “Thimerosal Causes Autism” Test Cases
By Alison Singer, President And in the Dwyer case the Special thimerosal-containing vaccines could And frankly, the amount of mercury one is Autism Science Foundation Master wrote: “Petitioners propose effects cause autism. Last August, the court ruled exposed to in the environment or even from mercury in [vaccines] that do not that thimerosal in combination with MMR breast milk, compared to what is contained resemble mercury’s known effects in the vaccine could not cause autism. in vaccines, would argue against vaccines n March 12, the U.S. Court of brain, either behaviorally or at the cellular There are two key points to keep in being causative. Federal Claims (i.e. Vaccine level. To prevail, they must show that the mind with regard to these proceedings. Secondly, a review of the history of Court) issued its decision re- exquisitely small amounts of mercury in First, the special masters are not scientists vaccine court indicates that this court has- O garding whether thimerosal- [vaccines] that reach the brain can pro- and they did not answer a scientific ques- n’t always come down on the side of the containing vaccines can cause au- duce devastating effects that far larger tion with their rulings. The science had science. The standard of evidence bar is tism. The decision, handed down by three amounts experienced prenatally or postna- been in for some time now in and it’s quite purposely set very low in vaccine court. Special Masters, was a resounding “No!” tally from other sources do not.” clear. Vaccines do not cause autism. Mul- The court was designed to compensate In the King case, the Special Master In the Dwyer case, the Special Mas- tiple studies have been conducted victims of vaccine injury, which of course wrote: “This case is not a close case. The ter also dismissed claims that some (www.autismsciencefoundation.org/ is very real. The standard of evidence is overall weight of the evidence is over- groups of children are unusually suscepti- autismandvaccines.html) investigating biologic plausibility, rather than scientific whelmingly contrary to the petitioners’ ble to the effects of mercury, writing, “the whether or not thimerosal, at the level con- evidence. In other words, you don’t have causation theories…based upon all the only evidence that these children are un- tained in vaccines, causes autism and look- to prove that thimerosal actually causes evidence that I have reviewed, I find that it usually sensitive is the fact of their ing at hundreds of thousands of children on autism, only that it might. One of the is extremely unlikely that Jordan’s autism [autism] itself.” several different continents by several dif- goals of the legislation creating the vac- was in any way causally connected to his This whole process began back in 2002 ferent investigators and in different popula- cine court in 1986 was to be generous thimerosal-containing vaccines. In short, when the Special Masters from the Vac- tions of children. Children who received with compensation because there are peo- this is a case in which the evidence is so one cine Court created an omnibus proceeding thimerosal in vaccines, compared to those ple who have very real, very serious ad- -sided that any nuances in the interpretation for handling the claims alleging that vac- who received lesser quantities of verse reactions to vaccines who deserve of the causation case law would make no cines were associated with autism. The thimerosal in vaccines or no thimerosal in difference to the outcome of the case.” March ruling focused on whether vaccines, all had the same risk of autism. see Vaccine Court on page 27
Pfizer Launches New Autism Research Group
By Robert H. Ring, PhD, Senior Director Supporting this goal, the Autism Re- with relevant expertise in genetics, neuro- perts from academic research centers, non Head, Autism Research Unit search Unit has developed near- and long biology, and behavioral pharmacology. -profit foundations, and governmental Pfizer Global Research & Development - term strategies for building a viable Pfizer’s work in autism extends be- agencies to advance the basic and transla- portfolio of clinical candidates that lever- yond the Research Unit to include a team tional understanding of disease patho- age recent advances in human genetics of medicinal chemists, computational physiology in ASD. he creation of Pfizer’s Autism and synaptic neurobiology. Pfizer also biologists, translational medicine experts Pfizer is also taking a leadership Research Unit represents a plans to examine the application of the and clinicians. role in helping to form precompetitive groundbreaking investment into company’s R&D efforts in psychoses Many of those involved in the Pfizer consortia with other pharmaceutical one of the largest unmet and and neurodegenerative disorders, and Autism Research Unit have a passion for companies to explore ways of increas- Tfastest growing medical needs in the neu- will investigate potential therapeutic the research that also originates in per- ing the field’s probability of success in roscience disease area. Formed in early relevance of other Pfizer compounds in sonal stories, with several members of the bringing new medicines to this patient 2009, the Pfizer Autism Research Unit is development, as well as marketed Pfizer team having family members on the Au- population through a variety of part- the first formal discovery group of its kind medicines. tism Spectrum. nership models. in the pharmaceutical industry. Since its launch, Autism Research Unit Pfizer wants to establish itself as a The goal of the Pfizer Autism Re- has built a portfolio of a number of early A Focus on External partner with the Autism Community to search Unit is to improve the quality of discovery programs. Partnerships and Relationships help advance basic research and acceler- life for patients with Autism Spectrum ate the translation of discoveries into Disorders (ASD) through the discovery The Team External engagement is a core strategy needed medicines. External Partnerships and development of innovative medicines underlying the Autism Unit’s approach to and Relationships include the University that treat the core deficits of the disorder The Research Unit is comprised of a discovery, with a focus on building col- of Pennsylvania and the University of and associated symptoms. multidisciplinary team of 16 scientists laborative partnerships with external ex- California at San Francisco.
National Autism Center Publishes Autism Manuals for Educators
By The National Autism Center dedicated to supporting effective, evi- Thanks to philanthropic support, the The manual assists educators in the dence-based treatment approaches for National Autism Center distributed the selection and implementation of the most ducators across the country, individuals with ASD, recently wrote and first 3,000 copies for free to special edu- effective research-supported treatments eager for reliable, research- published a comprehensive manual titled, cators in school districts throughout the for ASD. In addition to providing impor- based information about effec- Evidence-Based Practice and Autism in country. Since this initial distribution, the tant information about newly published tive interventions for the ever- the Schools. The 181-page manual in- Center has been inundated with requests research findings, it offers guidance on Eincreasing number of students with Au- cludes important findings from the Cen- for additional manuals. Visitors to the how to integrate professional judgment, tism Spectrum Disorders (ASD) in their ter’s newly released National Standards Center’s website from 50 states and more family values, and preferences into treat- school districts, are turning to the Na- Report, the most extensive analysis of than 20 countries have downloaded thou- ment selection in order to build capacity tional Autism Center for guidance. treatments for children and adolescents sands of free copies of the manual, which The Center, a nonprofit organization with ASD ever published. is now also available for purchase. see Autism Manual on page 30 PAGE 8 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SPRING 2010 Understanding and Addressing the Needs of Spanish-Speaking Families
By Marco R. Damiani, MA Studies at the City University of New York. have family members who speak Spanish, Director of Clinical and Family Services “Parents of children with autism and so it’s much more difficult to communi- YAI/National Institute for other developmental disabilities who are cate their concerns about their child and People with Disabilities Latinos are lagging behind most other learn how to access the proper services. groups,” Dr. Balcazar said. “In terms of the need for addressing their issues, concerns Confronting Barriers utism diagnoses among chil- and anxieties about the futures, these ef- dren of Latino descent have forts are enormously valuable to them.” Mara Henriquez, Supervisor of Com- risen more than 90 percent munity Targeted Outreach at the YAI A since 2002, according to a “I Was My Son’s Doctor” Network, says that Latino/a parents face Centers for Disease Control and Preven- unique barriers to finding services, includ- tion study released in December 2009. Sandra Lugo, a guidance counselor at a ing cultural and language differences. While the reasons for this are multifac- high school in Brooklyn and former “When Spanish-speaking families eted, Dr. Charles Cartwright, Director of teacher, has a 3-year-old child with au- don’t know that services exist or where to the YAI Autism Center, identifies several tism. When she realized that her son go for help, a sense of isolation creeps factors that have contributed to this star- needed help, she took action right away. in,” Mara said. “They may even think that tling increase. “I was my son’s doctor. He was fre- they are the only family who has a child “There is now a broader definition of quently falling and that wasn’t normal. He with a disability.” autism spectrum disorders, which results seemed not to hear me when I called his It doesn’t help that the most available in more children getting the diagnosis,” name and by the age of two, he was only and comprehensive information is solely Dr. Cartwright said. “Parents are also be- talking in one or two word sentences and in English and includes terms that fami- coming more aware of the signs and ask- not interested in being around other chil- lies may be unfamiliar with, even if they ing more questions when going to the Marco R. Damiani, MA dren,” Sandra recalled. “These were all are bilingual. doctor and parents are more motivated to eye openers, and I knew deep in my gut “If doctors and other professionals don’t receive the diagnosis, which leads to sters are falling through the cracks be- that my son needed help and I needed to speak Spanish, it can take families a long greater access of services.” cause of language and other barriers. act fast. I wasn’t prepared for the diagno- time to build trust,” Mara said. “Everyone "Some of the increases are due to bet- Dr. Fabricio Balcazar, Professor in the sis. When he was evaluated, I was devas- wants to feel as if their doctors are listening ter detection, particularly among children Department of Disability and Human De- tated and cried out of sadness, but I also to them and truly care, and that can be dif- who may not have come to attention in velopment at the University of Illinois at cried out of relief because he was going to ficult if there is a language barrier.” the past,” said the CDC’s Catherine Rice, Chicago and Director of the Center for get the help he needed.” who led the study, in the press conference Capacity Building on Minorities with Dis- Sandra’s son now attends a YAI Net- After the Diagnosis announcing the results. abilities, addressed this issue when he pre- work preschool and has made great pro- While it is clear that there has been a sented to families and professionals at a gress. The Lugos are fortunate, because Terese Sanabria, Bilingual Social significant increase in diagnoses among free Latino Health Care Conference, spon- they are bilingual and familiar with the Worker, and Erica Pitman, Social Worker, Latino/a children, the study does not con- sored by the YAI Network and the Center education system in New York. front the fact that many of these young- for Latin American, Caribbean and Latino However, many Latino families only see Spanish Families on page 18
Cartwright Interview from page 1 to have severe behavioral issues, such as Professionals should show the parents obsessive compulsive behaviors and anxi- that they are really listening to their con- that comes with having a child with autism. ety. This gradually becomes more and cerns, and include them in decision making That means helping tackle conflicts in the more of a problem to the point where it about the care of their child. They should marital relationship, which is common in interferes with the child’s ability to learn show respect for the family’s cultural back- families dealing with autism, and also help and is having a disruptive effect on class- ground. And they should be available over reduce the stress on the siblings. room involvement. What do you do and time, as the family faces the challenges of where do you go then? Again, it is impor- living with a child with autism. Parents Q: There is such an enormous range of tant to reach out to services that keep da- have a right to know that when they need information on the Internet, some good, tabases with a range of resources and ser- their clinicians/doctors, they know that some harmful. In this day and age, many vices for the evaluation of emotional/ they can get hold of them. That means hav- people first look to the Internet as their behavioral issues in children and adoles- ing their calls answered in a timely way. I primary resource of information. If you cents with autism spectrum disorders. think that one of the most powerful things were a parent whose child was just diag- Support groups can be vital sources of we can do as service providers is to be re- nosed with autism, how would you go information where parents can talk with sponsive and accessible both in time of about seeking clinical services for your each other and ask questions such as, crisis and when the family has questions child? “Have you been with a particular organi- and concerns that are not as urgent. zation for help, and was it helpful to you A: If I were a parent of a child between 18 and your child?” Q: So many parents rely on anecdotal months and age 2 who was told by a pedia- information. They hear one thing worked trician that my child appeared to be on the Q: What is important for families to be for a friend’s child so, based on that single autism spectrum, I would immediately seek Charles Cartwright, MD aware of when choosing a clinical treat- instance of success, they are going to go out as many services for which my child is ment center for their children? ahead and use that treatment for their eligible. Early diagnosis allows families to There are specialized academic centers child. We know that early intervention is seek out the best science-based clinical around the country that conduct research A quality treatment center has an estab- so crucial and months spent on an inter- treatments for their children and start those into the causes, early detection and treat- lished reputation and relationships with vention that hasn’t been backed by sci- interventions as soon as possible. ment of autism, and then publish and dis- key academic centers doing research in ence can result in wasted precious time Resources such as YAI LINK are very tribute their latest research findings. Ex- the assessment and treatment of children and financial resources. What are your helpful starting points that provide infor- amples are the Yale Child Study Center with autism, and has expertise in evidence thoughts on treatment and support ser- mation about early intervention centers in and the MIND Institute in California. -based practices. That means the center vices accountability to ensure that treat- your area. They can give parents informa- It is also helpful to get information uses treatments or interventions that have ment goals and objectives are being fol- tion about who to call, what services to from support and advocacy organizations been proven effective through scientific lowed and progress will be documented? look for and how to schedule an appoint- that are focused on autism and hold events research and clinical trials. It is also im- ment for an evaluation that will result in and activities in local communities; they portant that the center has professionals A: I can answer this by describing the the formulation of an early intervention also advocate for policies that will im- with expertise in different specialties such “Secretin” story. Back in the 1990s, there plan. They can also help locate support prove the lives of families affected by as pediatrics, neurology, psychiatry, was great interest in Secretin and claims groups in the community. It is important autism. speech and language therapy, occupa- that this hormone involved in digestion led to reach out and make those connections Autism presents a lifelong challenge. tional therapy, behavioral specialists, fam- to tremendous gains for children with au- with other families who have been Here is a common scenario that many ily therapists — all the different disci- tism spectrum disorders. Secretin became a through a similar experience and who can parents face: Their child is receiving au- plines that are involved in the care of chil- provide social support. tism services at a public school and begins dren with ASDs. see Cartwright Interview on page 27 AUTISM SPECTRUM NEWS ~ SPRING 2010 visit our website: www.mhnews-autism.org PAGE 9 PAGE 10 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SPRING 2010 AUTISM SPECTRUM NEWS ~ SPRING 2010 visit our website: www.mhnews-autism.org PAGE 11 Understanding ABA Intervention
By Mary Jane Weiss, PhD, (Baer, Wolf, & Risley, 1968). A descrip- Generality - Behavior change lasts over Cece McCarton, MD, and tion of each of these characteristics ap- time, appears in environments other than Ivy Feldman, PhD pears below: the one in which the behavioral tech- The McCarton Foundation niques were applied, or spreads to other Applied - Behaviors targeted must be so- behaviors not directly treated by the be- cially significant. An intervention must havior change techniques. In other words, ne of the most difficult as- address a behavior that has immediate treatment extends into untrained environ- pects of navigating autism importance to the indiviudal. ments and to untrained behaviors. treatment decisions for fami- O lies is making sense of the Behavioral - The behavior studied must All of these characteristics are essential vast array of claims of effectiveness. be one in need of improvement (social to behavior analytic treatment. They are Many treatments claim to be effective, significance). Additionally, it must be especially relevant to the problems faced though few have data to support those possible to measure the behavior in need by individuals with autism, whose needs claims. Parents are confronted with such of improvement. This is why behavior are so profound and pervasive. It is im- claims and with the complexity of the analysts put so much emphasis on the perative that changes are socially signifi- disorder. Many are confused about which observability of behavior. cant and extend to the natural environment. interventions might have relevance for Increasingly, behavior analysts have at- their child. It can be difficult for parents Analytical - There must be an attempt to tended to issues of social significance in to choose a treatment path, and many identify a functional relation between the selecting and defining targets for behavior worry that they may later regret not try- manipulated events and the behavior. change. Evaluation of impact is deter- ing a particular treatment. mined not just by skill acquisition, but by Most of the treatments that claim to be Technological - All of the procedures maintenance over time and generalization relevant or effective have little scientific used must be completely identified and to other behaviors, settings, and contexts. evidence to support those claims. An ex- precisely described. We must have opera- Perhaps most importantly in this list of ception to this is Applied Behavior Analy- Cece McCarton, MD tional definitions of our behavioral targets characteristics, behavior analysts value ef- sis (ABA). ABA intervention has been and/or goals, and all of our procedures fectiveness as a primary characteristic of widely documented as highly effective for core characteristics of ABA, including: the must be clearly defined. intervention. In fact, the ethical code of be- individuals with autism (e.g., Fenske, provision of intensive intervention, clear havior analysts mandates this. Section 2.09 Krantz, & McClannahan, 2001; Lovaas, and specific targets of intervention, precise Conceptually Systematic - Procedures for (Treatment Efficacy) of the Behavior Ana- 1987; MacDuff, Krantz, MacDuff, & techniques of instruction, the collection of behavior change are described in terms of lyst Certification Board’s Guidelines for McClannahan, 1988; McEachin, Smith, & objective data to evaluate learner progress, the relevant (basic, behavioral) principles Responsible Conduct (bacb.com) states that: Lovaas, 1993; Sallows & Graupner, 2005). data-based decision making, and dynamic from which they were derived. The data base supporting the effectiveness alterations in programming in response to (a) The behavior analyst always has the of ABA interventions distinguishes it from the learner’s needs. Effective - Applied behavior analysis must responsibility to recommend scientifically other approaches. The success of ABA Behavior analysis has been described produce clinically or socially significant intervention is likely the result of several as having seven dimensions that define it results to be judged effective. see ABA Intervention on page 23
The McCarton Foundation is dedicated to increasing the educational opportunities for children with autism and developmental disabilities and making a better life for them and their families.
We are proud to announce our move to 331 West 25th Street. Our new home, a former Catholic school with over 30,000 square feet, will allow us to expand our current research and training initiatives and expand the McCarton School.
For more information please contact:
Harvey Weissman - (646) 277-5422
350 East 82nd Street, New York, New York 10028 PAGE 12 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SPRING 2010 AUTISM SPECTRUM NEWS ~ SPRING 2010 visit our website: www.mhnews-autism.org PAGE 13
Parent-Implemented Interventions for Children with Autism Spectrum Disorders
By Dana Levy, PsyD and of Sciences to toddlers with ASD. The Elizabeth V. Roberts, PsyD project’s aim is to develop a parent- Child Study Center implemented intervention that embeds NYU Langone Medical Center naturalistic teaching strategies in everyday routines and is compatible with the man- date of the 2004 Individual with Disabili- hile the background noise ties Education Improvement Act (IDEIA), of daily life includes a Part C. ESI treatment focuses on the core stream of fascinating new deficits of ASD, in joint attention, shared W findings concerning the affect, communication, and play. neurobiology of autism, parents of chil- In ESI, parents are taught a repertoire dren with ASD face the urgent, present- of skills in the domains of communica- day challenge of enhancing their chil- tion, language, play, and social skills dren’s social, cognitive, linguistic, and through coaching. Coaching occurs in adaptive development in every possible both home and clinic settings. Parents are way. There is no time to lose. Two clear taught to integrate strategies into everyday needs in this regard are early intervention, routines. Based on the longstanding find- which has been repeatedly demonstrated ing that intensity of treatment matters in to be a central feature of better outcomes early intervention, parents are taught to in ASD, and methods for reducing non- use the skills twenty-five hours per week compliant and other maladaptive behav- in everyday predictable routines. ESI uses iors that interfere with learning. a developmental sequence for goal setting We profile two evidenced-based, par- and emphasizes teaching and learning in ent-implemented behavioral intervention Dana Levy, PsyD Elizabeth V. Roberts, PsyD daily routines and activities. ESI uses programs that address these needs. Early evidence-based practices driven by data Social Interaction (ESI) is an early inter- ising intervention in young children with the skills to independently implement collection and outcome measures, yet vention program developed specifically milder forms of ASD. treatment in the naturalistic environment goals are formed based on individual and for toddlers at risk for ASD. ESI aims to While behavioral interventions for of the home and community. family needs. Interventions are embedded maximize the development of social com- autistic children have always included in naturalistic situations, and treatment munication by offering intervention dur- parent training, the past fifteen years has Early Social Interaction Project goals are strategically planned within ing the earliest years of life. Parent Child witnessed a growing trend to increase the typical contexts. Some areas that ESI ad- Interaction Training (PCIT) was origi- involvement of family members and other The Early Social Interaction (ESI) Pro- dresses are: Social Communication, Joint nally developed for young, non-autistic non-clinicians and to embed teaching in ject, developed by Wetherby and Woods, Attention, Symbol Use, Emotion Regula- children to treat non-compliance, and naturalistic environments. PCIT and ESI was designed to apply the 2001 recom- tion, Active Engagement, Arousal States, other maladaptive behaviors that interfere go far beyond merely involving parents as mendations of the National Research with learning. PCIT is a potentially prom- partners or collaborators by teaching them Council (NRC) of the National Academy see Parent-Implemented on page 30 PAGE 14 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SPRING 2010
The Use of Pre-Post Test Designs to Evaluate Effectiveness of Autism Treatments
By Thomas Zane, PhD, BCBA, Director their test scores on various measures prior and treatment developers use this basic Center for Applied Behavior Analysis at to receiving RDI - subsets of the Autism design (e.g., Krantz, 2009; Linderman & The Sage Colleges Diagnostic Observation Schedule and Au- Steward, 1999; Rossignol, Rossignol, tism Diagnostic Interview-Revised. Addi- James, Melnyk, & Mumper, 2007). tionally, parents provided information The important question is, does this his current issue of Autism Spec- about each child’s educational placement design provide convincing proof that the trum News focuses on under- (on a continuum of intrusiveness) and level treatment caused the improvement in the standing and accessing clinical of “flexibility” (i.e., child’s comfort level variable(s) being measured? The answer is treatment services. A prerequi- reacting to change in his/her life and rou- unambiguous - this basic design never per- Tsite to accessing clinical treatment is to tine). After obtaining these measures, the mits confirmation of cause and effect be- understand what treatments might be ef- participants received RDI for an average of tween the treatment and positive changes fective and have a chance of delivering 18 months. Following treatment, Gutstein, in the dependent measures (e.g., autism positive results. And a prerequisite to de- et al. conducted post-test assessments using symptomology; Drew, Hardman, & Hosp, termining what treatments have actually the same measures as the pretest. For most 2008; Gay, Mills, & Airasian, 2009). been proven to be “evidence-based” is children, the authors concluded that the The weakness of this design (to dem- understanding what allows a research post-test scores improved over pre-test onstrate causal relationships) relates to its study to give valid and believable results. scores, and suggested that RDI was respon- inability to minimize “internal validity” Consider a study recently published by sible for the improvement. threats. The internal validity of a research Rossignol and Rossignol (2006), in which Researchers and clinicians often at- study refers to the level of confidence in they assessed the effect of a hyperbaric tempt to demonstrate the effectiveness of believing that changes in the variables oxygen chamber on a range of symptoms an autism treatment by using this common being measured are due to the treatment of six children diagnosed with autism. “pre-post” test design (also called “before protocol being used. If the research study Prior to starting the hyperbaric oxygen -after, “AB,” and “one-group, pretest- is designed to eliminate any explanation therapy (HBOT), the researchers assessed posttest design; e.g., Drew, Hardman, & other than the treatment changing what is the participants on three measures, the Hosp, 2008; Fraenkel & Wallen, 2009). being measured, then that study has strong Autism Treatment Evaluation Checklist, The general strategy in a pre-post test internal validity. On the other hand, if the the Childhood Autism Rating Scale, and Thomas Zane, PhD, BCBA study is to recruit one group of subjects, research study is designed in a way that the Social Responsiveness Scale. The chil- obtain some measurement of the critical allows explanations other than the treat- dren then participated in HBOT for 40, 1- authors suggested that the HBOT was re- dependent variable(s) hypothesized to be ment variable to possibly be influencing hour sessions, and the researchers then re- sponsible for the improvement. changed by the treatment, implement the what is being measured, then that study assessed the participants using the same Consider a study by Gutstein, Burgess, treatment protocol, and then the re- will have weak internal validity, and the measures as in the pretest. For most of the and Monfort (2007), in which they as- administer the same measurement as pre- conclusion must be that the treatment may children, the post-test scores were lower on sessed the effectiveness of Relationship test. There is an assumption that if the not be the only reason for the change in each assessment (for these instruments, a Development Intervention, an autism treat- post-test scores have changed positively the dependent measurements. And if there lower score suggests fewer symptoms of ment. The authors selected 16 children from the pretest scores, then the change is autism and improved functioning). The with autism and reviewed their files, noting due to the treatment. Many researchers see Effectiveness on page 29 AUTISM SPECTRUM NEWS ~ SPRING 2010 visit our website: www.mhnews-autism.org PAGE 15
My Grandson May Have Autism - How to Discuss This With Family Members
By Peggy Halliday, MEd, BCBA and We would like to offer some concrete David Celiberti, PhD, BCBA-D suggestions that may increase the likelihood that your discussion will be constructive:
am concerned that my grandson • Plan your discussion ahead of time. may have signs of autism, but I am Find a time and place when you will uncomfortable bringing this up with not be interrupted. my son and daughter-in-law. Do you haveI any suggestions about how best to • Take some time to think about what approach them?” you want to share and how you want It is natural to be unsure of how to share to frame your concerns. You might your concerns with your grandson’s par- begin by commenting on the child’s ents. As is the case with many concerned strengths and praising the parents’ family members, you may worry that such love and dedication to their child. It is a discussion may not be well received. If important not to appear judgmental. autism is a possibility, you would not want to delay screening and referral for possible • Try to keep the conversation free evaluation and services, because this may flowing. You may want to ask a few waste valuable time during which interven- questions that will allow the parents tion can be most beneficial for your grand- to express their own concerns, if they son. Even knowing that best outcomes are have them. associated with early diagnosis and inten- sive intervention, it still may be difficult to • The role you take in the child’s life talk to your son and daughter-in-law if they depends, of course, on geographic have not expressed concerns to you. Peggy Halliday, MEd, BCBA David Celiberti, PhD, BCBA-D proximity, but offer concrete, practi- As a grandparent, you have already cal help whenever possible. For ex- raised at least one child, so you probably There are a number of important ship that you have. Regardless of your ample, you might offer to babysit have a good sense of what is typical in things to consider. The way in which you relationship, it is important that you siblings while parents pursue evalua- child development, and what is not. You approach your son and daughter-in-law bring this up from a place of love and tion of the child, or offer a respite may feel that your grandson is not making will depend in large part on the quality concern, rather than judgment and blame. weekend of childcare so that your son expected gains or may appear delayed in of your pre-existing relationship and on Many parents who have been carefully and daughter-in-law might have time some areas such as communication or the nature of how you communicate with and respectfully approached by a relative to discuss the situation without inter- play relative to other children his age. one another. You may possess a relation- later admit that they already had con- ruption. Whatever assistance you This may create in you a sense of urgency ship where difficult issues are frequently cerns of their own, and it was a relief to offer, the important thing is that your which must be balanced with the need to and easily discussed. On the other hand, discuss them with someone else close to support your son and daughter-in-law. this may not typify the type of relation- the child. see Grandson on page 20 PAGE 16 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SPRING 2010 AUTISM SPECTRUM NEWS ~ SPRING 2010 visit our website: www.mhnews-autism.org PAGE 17
Autism Science Foundation 2010 Doctoral Training Award Recipients Announced
Staff Writer • Sarita Austin/Dr. Rhea Paul; Yale Autism Spectrum News Child Study Center: Enhancing Un- derstanding and Use of Conversa- tional Rules in School-Aged Speakers he Autism Science Foundation with Autism Spectrum Disorders recently announced that it had awarded doctoral training fel- • Rhonda Charles/Dr. Joseph Buxbaum; lowships to six pre-doctoral Mt. Sinai School of Medicine: A Pre- Tstudents committed to pursuing careers in clinical Model for Determining the basic and clinical scientific research rele- Role of AVPR1A in Autism Spectrum vant to autism spectrum disorders. In all, Disorders $180,000 in grants will be distributed to student/mentor teams conducting research • Sarah Hannigen/Dr. Mark Strauss; in autism treatment, biomarkers, animal University of Pittsburgh: Defining models, and epidemiology. High and Low Risk Expression of “We are thrilled to be funding grants Emotion in Infants at Risk for Autism after less than ten months of fundraising and operations” said Autism Science Foundation • Matthew Maenner/Dr. Maureen Durkin; co-founder Karen London. “Outstanding University of Wisconsin, Madison: research is the greatest gift we can offer our Phenotypic Heterogeneity and Early families. We are so grateful to all our donors Identification of ASD in the United and volunteers who have come together to States support autism research.” “Too much time has been spent look- • Michael Sidorov/Dr. Mark Bear; ing backwards at the now debunked the- MIT: Investigation of Postnatal Drug ory that vaccines caused autism,” said Grant applications were reviewed by The following projects were selected Intervention's Potential in Rescuing Alison Singer, president of the Autism members of the Autism Science Foun- for funding (student/mentor): the Symptoms of Fragile X Syndrome Science Foundation. “We need to re- dation's Scientific Advisory Board in Adult Mice group; we need to look forward and invest (SAB) as well as by outside scientific • Karen Burner/Dr. Sara Jane in discovering biomarkers that can lead to experts in specific subject areas. Grants Webb; University of Washing- Alison Singer is President of the Au- earlier diagnosis, in animal models that were also reviewed by ASF's Stake- ton, Seattle: Observational and tism Science Foundation. Visit can illuminate biological pathways, and in holder Review Committee, comprised Electrophysiological Assess- www.AutismScienceFoundation.org to treatments that target the most debilitating of parents, individuals with autism, a ments of Temperament in Infants learn more about the Autism Science aspects of autism. This round of grants is special education teacher and other at Risk for Autism Spectrum Dis- Foundation. Ms. Singer can be reached aimed in that direction.” stakeholders. orders at [email protected]. PAGE 18 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SPRING 2010 Spanish Families from page 8 diverse communities, the Latino Health Care Conference brought together more at the YAI Network’s Gramercy School, than 300 Spanish-speaking families for a recommend that families take the follow- day of support and empowerment, helping ing steps to access services: to alleviate isolation and lack of informa- tion, as well as to break down some of the • Seek out education on what a possi- cultural barriers. ble diagnosis of autism might mean. “This conference brings together fami- One website to check is http:// lies from throughout the Latino commu- espanol.ninds.nih.gov/trastornos/ nity to provide them with information and autismo.htm supports that will help their loved ones with disabilities enjoy the highest quality • Speak to your pediatrician – ask of life,” said Stephen E. Freeman, Chief questions! Operating Officer of the YAI Network. “Seeing is believing,” said Sandra Lugo, • If you do not have a pediatrician, who spoke at the conference. “You can’t go to a larger medical center or ignore what is there. You have to take a stand teaching hospital where they are and act on getting the necessary services!” more likely to have bilingual spe- “We as parents have to stop placing limits cialists available. on ourselves and our children and fight for services,” said Luz Barrales, a conference • Advocate for your child to see a spe- Gathering for a free Latino HealthCare Conference are, from left, Mariela Dabbah, attendee who has a son on the autism spec- cialist — a developmental pediatri- author and speaker, New York City Council Member Fernando Cabrera, trum. “We can’t wait for people to fight for cian or a child neurologist is a good and Stephen E. Freeman, YAI Network Chief Operating Officer us. We have to help our children be inde- place to start. pendent and find the best services for them.”
• Pursue an Early Intervention • If you do not obtain services based is something not right with your Marco Damiani is Senior Director of evaluation by calling an Early upon the evaluation you receive, re- child, pursue additional opinions. Clinical and Family Services at YAI/ Intervention provider agency in visit the issue in six months for a National Institute for People with Dis- order to assess if you child possible re-evaluation. Forming a Community abilities. For more information on ser- needs services (or a CPSE vices available to Spanish-speaking fami- evaluation if your child is turn- • Most importantly, trust your instincts As a demonstration of the YAI Net- lies who have a child with autism, please ing 3 or older). and follow them. If you believe there work’s commitment to serving the needs of contact YAI LINK at 1-866-2-YAI-LINK.
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The New York League for Early Learning offers a caring work environment dedicated to professional development and work-life balance, where all staff input is valued, ongoing training and supportive supervision and an opportunity to work with the best professionals in the field. NYL pays 100% for employee health and dental coverage and also offers tuition reimbursement, scholarships, career and educational counseling and professional development. AUTISM SPECTRUM NEWS ~ SPRING 2010 visit our website: www.mhnews-autism.org PAGE 19 Introducing the Compass Project at JCCA
By Elise Hahn Felix, LMSW, Director youth, which include: 1) assessment; 2) ing, sexuality, and establishing bounda- JCCA Compass Project vocational preparation; 3) socialization; 4) ries, since this population often has a dif- counseling and support; 5) referral; and 6) ficult time gauging boundaries and social professional training. cues when it comes to interacting with the here is a relatively large array of opposite sex. services available to high- Assessment - Compass social workers functioning young children with conduct comprehensive assessments for Counseling and support - Compass staff special needs, through early youth in high schools to evaluate their provides individual, family, and group Tintervention, special education, and en- readiness for college or an alternative post support, both for youth and parents, to richment programs. However, as these -secondary school, and with college stu- help them adjust and plan to live with young people age, service availability dents to gain a picture of their options for their learning challenges. dwindles, and there virtually are no sup- employment. The assessments include a ports available to help youth and their three-session series consisting of: a) indi- Referral - Based on assessments of chil- families navigate the challenges of transi- vidual career assessment and testing; b) a dren and families, Compass social work- tion from high school to college and/or consultation session with youth and par- ers provide linkages with existing services the world of work. ents; c) peer group discussions of career in the community, e.g., therapy, socializa- Jewish Child Care Association (JCCA) directions. tion, learning specialists, and training. has been providing services to special Westchester Jewish Community Services needs youth and their families on Long Vocational Preparation - Compass staff has the capacity to provide these linkage Island and in Queens for more than 14 conducts college and career guidance and services. years. The JCCA Compass Project serves counseling and work internship programs. high-functioning youth in high school and It holds work preparation workshops and Professional training - Compass provides college who have disorders on the Autism Elise Hahn Felix, LMSW develops innovative programming to help training for professionals working with Spectrum (ASD) and other special needs, youth ready themselves for and adjust to this population in JCCs, synagogues, and such as learning disabilities (LD) and At- with community-based “gateway institu- college and/or the workplace. school districts, with an emphasis on tention Deficit Disorder (ADD). Compass tions” which these families may already working with older children. Compass helps young people and their families to work with, including the many Jewish Socialization - Compass provides organ- staff and guest speakers deliver lectures prepare for college or alternative post- Community Centers (JCCs) and Ys on ized social activities to help youth build about topics affecting this population and secondary programs and careers, through Long Island and in Queens, as well as social skills and to give respite for par- are available to consult with other pro- information, referral, assessment, individ- local colleges, synagogues, schools, and ents, including supervised volunteer op- grams developing services for these ual and group support, and a range of in- parenting centers. portunities. Ongoing socialization groups youth. novative socialization programs. Serving Recently, JCCA’s Compass Project are offered to high school and college more than 500 youth and their families expanded into Westchester and also youth. Each group meets on a weekly The JCCA Compass Project is de- last year, the Compass Project minimizes serves Manhattan and Brooklyn. The basis and once a month, and both groups signed to help individuals with learning stigmatization and maximizes conven- program offers six main transition ser- convene for dinner together. The topics ience by offering services in partnership vices to high school and college-age of these monthly dinner meetings are dat- see Compass Project on page 25
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New York’s Interagency Task Force on Autism Issues Recommendations Calls for Improved Delivery of Services, More Access to Screening and Diagnosis, and Greater Training
By Dixie S. Yonkers statewide response to autism. The Task vices and activities, to elevate New York Senior Administrative Analyst Force, co-chaired by the Commissioners State’s ASD competency, and to identify NYS OMRDD of OMRDD and the State Education De- opportunities for bringing private and partment, would provide an opportunity public parties together in support of indi- for the leaders of New York’s various viduals with ASDs. And, they would do n January, at the conclusion of 13 service systems to examine how their re- so in roughly twelve months. months of deliberation, the New spective parts of State government – in With this time-limited charge, the Task York State Interagency Task Force areas such as health, education, and dis- Force members recognized the need to be on Autism sent its report to Gover- abilities services – together could provide efficient in their outreach. Still, they also norI David Paterson, the leaders of the lifelong support to New York citizens. knew they had to hear from New York New York State Legislature, and the The examination that ensued engaged the citizens to confirm what they thought Chancellor of the New York State Board leaders and staff of eleven state agencies, were the needs of individuals with ASDs of Regents. The report describes the needs each of which plays a key role in support- and their families and to identify any and challenges faced by individuals with ing New York’s individuals with ASDs newly emerging issues. The Task Force autism spectrum disorders (ASDs) and and their families to lead meaningful and sought input from families, individuals their families. It also makes numerous productive lives. and professionals through regional forums recommendations for how New York facilitated by the six regional Centers for State agencies should address those needs The Task Force Process Autism and Related Disabilities (CARDs) within systems that support people with and through an online survey open to the many different disabilities and needs. The Task Force began its work in No- public and posted on member agency Within those recommendations, however, vember 2008. It set out to examine how Web sites. As a result, the Task Force a focused message emerged: New York New York State government can prepare obtained valuable insight from a wide must improve its autism competency. It Dixie S. Yonkers for providing a comprehensive system of range of parties in both a detailed discus- needs to focus on providing information lifelong support to the increased numbers sion and questionnaire format (at the re- and training for a host of different parties tion and Developmental Disabilities of New Yorkers living with ASDs. It gional forums) and also through a very – physicians, educators, families, and (OMRDD) and its Autism Platform which gathered input from a range of stake- brief and specific survey. The input the even the community at large – so that put forth a wide range of activities that the holders on the needs and desires of those Task Force received confirmed the trends knowledge of how to best serve, support, agency would undertake to ensure its sys- with ASDs and examined all the ways and issues the State agency leaders and educate and understand individuals with tem was well prepared to support increas- New York State agencies were already staff expected, but also provided new in- ASDs spreads throughout our state, effec- ing numbers of individuals with ASDs. responding. In crafting its recommenda- formation about what the public feels are tively elevating our communal ability to OMRDD is but one of several agencies tions, the Task Force members agreed the most important priorities related to respond effectively. that provide services and supports to indi- they would specifically seek to improve supporting individuals with ASDs and New York’s Task Force on Autism viduals with autism, and as such, could interagency coordination of services, to grew out of the Office of Mental Retarda- only effect a small portion of the needed maximize the effectiveness of State ser- see Task Force on page 26
Grandson from page 15 when their child is between the ages of 12 Autism Speaks Association for Science in and 18 months. If the parents are begin- www.autismspeaks.org Autism Treatment (ASAT) grandson’s parents perceive it to be ning to realize a potential problem exists, www.asatonline.org helpful, so try and gauge their reac- you want to gently urge them not to delay The Autism Speaks website includes tions carefully. a preliminary assessment and evaluation. an Autism Spectrum Disorder Video On the ASAT website, you will find exten- You should never take for granted that Glossary of video clips designed to sive information about the scientific sup- • Avoid labels and technical terms, developmental concerns will automati- help parents and professionals learn port (or lack thereof) behind the full array which may trigger fear or upset with cally be addressed during routine visits to more about the early red flags of of treatments proposed for autism, research the parents. Focus instead on discuss- the pediatrician. Refer parents to re- autism, information about how au- reviews, articles and guidelines on how to ing milestones, which are observable sources such as books and good websites tism is diagnosed, a resource library, make informed choices and weigh evi- indicators of a child’s development they can explore on their own (we empha- and a free 100 Day Kit designed to dence in selecting treatment options, a sec- and accomplishments. size the word “good” as there is a tremen- help families of newly diagnosed tion of frequently asked questions such as dous amount of misinformation about children make the most of the first the one you asked, information about up- • In some cases, it may be beneficial to autism both in the media and on the Inter- 100 days following a diagnosis of coming conferences of interest, and links to think about the discussion as a series net, particularly many false promises autism. helpful sites and other science-based or- of tiny conversations. This would be about autism treatment). The most helpful ganizations. You can also sign up for more appropriate if you have frequent websites at this stage are often the ones First Signs ASAT’s free quarterly newsletter, Science contact with your son or daughter-in- that discuss developmental milestones. www.firstsigns.org in Autism Treatment. law. It may then be helpful to share Parents often know when to expect their some observations that may provide a infant and toddler to sit up or take their The First Signs website contains a vari- In summary, we think it is commendable backdrop for later discussion (e.g., first steps, but they do not know when ety of helpful resources related to recog- that you desire to share your concerns in a “Little Peter seems overwhelmed by they should begin to babble with inflec- nizing the first signs of autism spectrum sensitive way with your son and daughter-in- noise levels” or “I have noticed that tion, point to things they notice or want, disorder, and the screening and referral law. We hope that this advice has been help- he does not seem to know how to use imitate gestures, or show interest in an- process. There is a directory of local re- ful to you, and we wish the best for your words to get his needs met.”). It may other child. sources for at least eight states and we grandson’s future. In the event that your con- also be helpful to discuss observa- The following websites include mile- think it is likely that that the number of cerns are founded and your grandson receives tions surrounding worrisome or ab- stones checklists, booklets, and charts, states represented will increase over a diagnosis of autism, we recommend that sent peer or sibling interaction. and a wealth of other helpful information: time. your family refer to the 100 Day Kit from Autism Speaks and learn all they can about • Emphasize the need to simply get any Centers for Disease Control and Prevention American Academy of Pediatrics (AAP) applied behavior analysis, the treatment for concerns checked out in order to “rule www.cdc.gov/ncbddd/actearly www.medicalhomeinfo.org/ autism that has the most compelling scientific out” anything serious or to get some health/autism.html support. The website of the Association for guidance in how to promote skill devel- The Act Early website contains an interac- Science in Autism Treatment would be an opment. You might follow this up by tive and easy-to-use milestones checklist The AAP website contains informa- incredible resource for families as well. mentioning that the earlier a potential you can create and periodically update for tion for families, links to many other problem is recognized and addressed, children ages three months through five web sites, information about pediatri- Peggy Halliday, MEd, BCBA is Direc- the easier it is to help the child. years, tips on sharing concerns with the cian surveillance and screening, and tor of Outreach Services at the Virginia child’s doctor, and free materials you can early intervention. This site contains Institute of Autism. David Celiberti, PhD, Most parents begin to become con- order, including fact sheets, resource kits, great tools for pediatricians as well BCBA-D is President at the Association cerned that something may be wrong and growth charts. and parents. for Science in Autism Treatment. AUTISM SPECTRUM NEWS ~ SPRING 2010 visit our website: www.mhnews-autism.org PAGE 21
The Transition from Preschool to School-Age Special Education: CPSE to CSE
Ilene Solomon, PhD person who has knowledge of the student There are two guiding principles for Institute for Cognitive Diversity may be invited to the CSE by either the providing special education services. One Bank Street College of Education parent or the district. These people usually is a “free appropriate public educa- include professionals who have worked tion” (FAPE) and the second is “the least with the student in an ancillary capacity restrictive environment” (LRE). That is, ransitions from one school set- such as speech and language therapists, students with a disability have a right to be ting to a different school setting occupational therapists, etc. A district phy- educated with typically developing peers may be cause for anxiety for sician can be a member of the CSE but her to the greatest extent possible and they parents. This article is intended presence usually requires a request be should be provided with this at no cost to Tto provide information on the transition made at least 72 hours prior to the meeting. parents. Students should have access to from special education services in the the general education curriculum and ex- preschool setting to special education What Type of Services tra-curricular activities. Some students services in kindergarten. Will My Child Receive? will need a more “restrictive” setting ei- From three to five years of age, special ther in a special education classroom or in education services are deemed appropriate Children on the autism spectrum who are a special education school. That is, some by the Committee on Preschool Special receiving special education services in a students need a more protected and con- Education (CPSE). During the transition preschool setting are receiving interventions trolled environment in order to best learn to kindergarten and through high school, of varying types and intensities. These inter- at various points in time. Since there are these decisions will be made by the Com- ventions can range from itinerant services differences among students with disabili- mittee on Special Education (CSE). Fund- given in a regular education preschool to a ties, there is no single definition of what a ing for services under CPSE are provided self-contained special education setting with LRE will be for all students. by the county in which the child resides ancillary services. The services provided in and the New York State Education De- preschool are based on the child’s function- How Will the Type of partment. Funding for CSE services are ing and development in various domains Services Be Determined? provided by your local school district. Ilene Solomon, PhD (language, fine motor, gross motor, cogni- Your local district is reimbursed for some tive, behavioral/emotional) and how the To determine what an appropriate set- but not all of the expense through state implications of the evaluations and is functioning impacts appropriate activities ting is for a student, a team will review and federal funding. knowledgeable about the district re- such as communication skills. There is no the student’s needs. Several approaches sources. The school psychologist or one interest in formal educational skills during may be utilized. These may include: What is the CSE? of the educators may serve as the district the preschool years. A range of services representative. You as the parent are also may also be provided in kindergarten. Ser- • Reviewing preschool records which The CSE is a multidisciplinary team a member of the CSE. There may be a vices will be based on your child’s current include reports and evaluations. that consists of a school psychologist, parent member who has a child with a functioning and how this functioning might special educator, general educator and a disability and resides in the school dis- interfere with educational attainment. Not • Observing your child at his current representative of the school district who is trict. As the parent you may request that all children with an autism spectrum disor- qualified to understand the instructional the parent member not participate. Any der will receive the same services. see Transition on page 28 PAGE 22 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SPRING 2010 Attention Conference Planners!
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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 problems with give and take in conversation? • Shows “odd” behaviors and mannerisms? Looking for information and support? AHA Association can help!
Support meetings, hotline, informational lectures Biannual conferences for professionals, family, and individuals on the autism spectrum Email listserv and member newsletter (888) 918-9198 Asperger Syndrome and High Functioning Autism Association (AHA) Inc. Website: www.ahaNY.org Email: [email protected]
AHA Association is a 501(c)(3)Not-for-Profit Corporation
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Robin’s Voice A Resilient Mom’s Commentary on Autism
Accessing Clinical Treatment - Parents Must be Educated Consumers
By Robin Morris I have worried about the criticism • Make a list. Create a hierarchy of Freelance Writer of conventional medicine. It is the what about autism impedes the life of tease for truth from fact that begs rep- your child and your family. Establish rimand. The notion of a “one stop your priority needs. t is human nature to bristle when shop” to tempt parents living with au- we are told to calm down, while tism is seductive. I bear no umbrage • Look for resource websites (example, our inner cry is screaming, “Why toward individuals who integrate hands Autism Speaks resource guide: my child!” We will stop at no on therapy with a data-taking trial www.autismspeaks.org/community/ roadblockI to make a difference, to process for behavioral intervention. I fsdb/search.php). find a cure or an intervention that will worry about the potions and anecdotal temper the behaviors that autism pre- testament of success. • Investigate services within your sents. However, this feverish pitch can Conflict of interest is the operative state and what are your child's render parents vulnerable and willing term. We know the obvious answer as rights. to buy anything from snake oil to sha- to who profits from vaccine sales and man ritual. drug sales; however the population • Ask questions about success with Autism awareness prompts a kalei- benefits as well. The next question is, evidence (data), inquire about refer- doscope of interventions. What disturbs who gains from book sales, bio medi- ences. me is the relationship between those cal sales, vitamin sales, and hyperbaric receiving remuneration and those vul- oxygen therapy sales etc.? It is a • Remember, no question is too in- nerable parents who simply want to be- tricky conundrum because all roads do significant. You are the driver lieve. Navigating the journey through not lead to one simple answer. A few here! accessing clinical treatment for autism short years ago the touted “cure” was a is a daunting task. Unguarded parents series of Secretin injections that cost Robin Hausman Morris is a freelance are not prepared for the onslaught of Robin H. Morris parents thousands of dollars. Ulti- writer and can be reached at Robin- opportunists. There is money in autism, mately, it proved no more effective [email protected]. Robin is a and it is not unreasonable to advise the than placebo. parent examiner for Examiner.com - buyer beware policy. Nevertheless, par- advisable to ask as many questions as We need to be educated consumers. www.examiner.com/x-3565-Hartford- ents have to start somewhere, and it is you deem necessary. Be pro-active! Parenting-Examiner.
ABA Intervention from page 11 tional relations across all interventions members of the educational team to assess Fenske, E. C., Krantz, P. J., & McClannahan, used for individuals. (In other words, be- the impact systematically and rigorously. L. E. (2001). Incidental teaching: A not-so- supported, most effective treatment proce- havior analysts want to determine cause However, the value on effectiveness discrete-trial teaching procedure. In C. dures. Effective treatment procedures and effect relationships. They want to be overrides a desire to explore ancillary inter- Maurice, G. Green, & R. M. Foxx (Eds.), have been validated as having both long- able to identify the specific variables re- ventions that are not likely to be effective Making a difference: Behavioral intervention term and short-term benefits to clients and sponsible for behavior change. They seek or that have not shown promise with the for autism. Austin, Texas: Pro-Ed. society. to show relationships between variables - learner. Most importantly, a behavior ana- social greetings increased when reinforce- lytic view requires that the data determine Lovaas, O. I. (1987). Behavioral treatment (b) Clients have a right to effective treat- ment was used, stereotypy decreased in the treatment. If interventions do not show and normal intellectual functioning in young ment (i.e., based on the research literature the presence of preferred music, aggres- merit, they should be discontinued. autistic children. Journal of Consulting and and adapted to the individual client). sion decreased when tasks were modified Clinical Psychology, 55, 3-9. or choices were provided, etc.). Summary (c) Behavior analysts are responsible for re- Behavior analysts want to help parents MacDuff, G. S., Krantz, P. J., MacDuff, M. A., view and appraisal of likely effects of all alter- and educators make treatment decisions To understand ABA intervention, one & McClannahan, L. E. (1988). Providing native treatments, including those provided by that are data-based and that are based on a must understand the dimensions of be- incidental teaching for autistic children: A rapid other disciplines and no intervention. demonstrable level of effectiveness. Be- havior that are so highly valued by prac- training procedure for therapists. Education havior analysts possess the skills to design titioners. It is essential that we target and Treatment of Children, 11, 207-211. These guidelines are pivotal in defin- methods to study an intervention on an behaviors that are important, that we ing how behavior analysts treat individu- individual level. This approach helps to evaluate our success by transfer of skills McEachin, J., Smith, T., & Lovaas, I. als with autism. Behavior analysts recom- objectify the question of whether a par- to real-world contexts, that we assess for (1993). Long-term outcome for children mend interventions that have demon- ticular intervention should be tried with a generalization, and that we identify con- with autism who received early intensive strated effectiveness. Behavior analysts particular learner. There are some inter- trolling variables. Our recommendations behavioral treatment. American Journal are familiar with levels of evidence, and ventions that are clearly harmful or inef- for treatment come from the research of Mental Retardation, 97, 359-372. recommend evidence-based interventions. fective for individuals with autism, and literature. We can use our science to They remain familiar with the research these would not be recommended by be- investigate the impact of experimental Sallows, G. O. & Graupner, T. D. (2005). literature and with the evolution of clini- havior analysts (e.g., facilitated communi- interventions, as long as they do not di- Intensive behavioral treatment for chil- cal practices in the field, so that they con- cation). However, many interventions minish access to effective intervention. dren with autism: Four-year outcome and tinually alter their recommendations in have yet to be shown to be effective or In behavior analytic intervention, data predictors. American Journal on Mental response to the evolution of scientific ineffective. They may lack data regarding guide decisions about treatments to rec- Retardation, 100, 417-438. knowledge. their effectiveness, data may be mixed, ommend and to continue. Practice In addition to recommending interven- available studies may be weak or flawed, evolves based on the objective verifica- Mary Jane Weiss, PhD, BCBA is the tions that are evidence-based, behavior or there may be a paucity of data that are tion of success. Director of Research and Training at the analysts may assist parents and teachers in meaningful or objective. Douglass Developmental Disabilities Cen- evaluating the impact of alternative or These are the interventions that a behav- References ter and a Research Associate Professor at ancillary interventions. They use their ior analyst might design a strategy to Rutgers University. She consults to The knowledge of the science of behavior and evaluate on an individual basis. It is not Baer, D. M., Wolf, M. M., & Risley, T. R. McCarton School. Cecelia M. McCarton, of research design to help determine func- likely that a behavior analyst would recom- (1968). Some current dimensions of ap- MD is the founder and CEO of The McCar- tional relationships for individual clients. mend such interventions, but it may be the plied behavior analysis. Journal of Ap- ton Foundation. Ivy Feldman, PhD is Educa- There is a value on understanding func- case that they could assist the family or plied Behavior Analysis, 1, 91-97. tional Director at the McCarton Foundation. PAGE 24 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SPRING 2010 Psychologist from page 1 trum have a variety of sensory issues. book with the specific goal of educat- Some diminish with age and others ing cognitive behavior therapists with the goal of modifying them in posi- may not. There is a relationship be- about AS so that the large numbers of tive ways. This kind of approach may be tween impaired social skill and de- CBT-trained psychologists could be most beneficial as parent or teacher train- gree of sensory over-responsiveness available to those on the spectrum. ing for those who need assistance helping (Hilton et al., 2010.) A psychologist CBT frequently has been ineffective a child with AS manage. may help an individual, a family, or a if the unique aspects of AS are not No matter what the orientation of a par- teacher understand the effects of sen- taken into account. Therapists under- ticular psychologist, the consumer should sory sensitivity and how to cope in taking such treatment should be que- inquire about their expertise in dealing with various environments. An occupa- ried about their knowledge of AS or individuals on the autism spectrum and the tional therapist (with expertise in their willingness to learn. Gaus’ book specifics about how their intended treatment sensory issues) may provide evalua- has been provided to many therapists is appropriate and useful. Sometimes ado- tion and treatment of sensory dys- by their clients in search of compe- lescents and adults complain that they have functions and sensitivities. tent CBT treatment. spent years with a therapist who did nothing to change their skills or help them solve • Executive function refers to a wide • Anger management treatment is widely problems, so not only is it important to range of abilities including planning, available, but does it take into account choose wisely initially, but it is also critical organization, goal selection, patterns of the causes for anger a person with AS to reevaluate periodically the effectiveness remembering, flexibility, self- might have? Generic treatment is of ongoing treatment. In recent years, re- regulation, inhibition, and shifting set. unlikely to be useful as individuals with searchers have developed more effective They are called executive functions AS may have unique issues that affect therapeutic tools that psychologists may em- because they represent the organization anger including poor executive skills, ploy that truly address the unique issues of and control mechanisms of the brain. rigid thinking, histories of bullying, individuals with AS. But this knowledge is Individuals with ADHD, AS, nonverbal poor recognition of specific emotions, by no means common and professionals who learning disability and related condi- or unfair hiring and firing procedures in have it must be sought out if one wishes to tions may struggle with these issues. employment. Carefully assessing the participate in meaningful treatment. Lynda Geller, PhD Individuals with AS often have particu- precursors of anger problems requires a Psychologists may provide individual lar problems with the self-regulation thorough understanding of the effects psychotherapy, group psychotherapy, indi- you understands input more effi- aspects of behavior associated with AS may have and the specific circum- vidual social skill/cognition treatment, ciently than you, you may quickly executive function deficits (Semrud- stances and history of the client. group or dyadic social skills treatment, con- become confused or lost. Years of Clikeman et al., 2010). Psychologists sultation to schools and programs, parent such experience can create a wide and neuropsychologists may be able to • Meltdowns (inappropriate behavioral training, psychoeducation, couples therapy gap between the person with AS and intervene in productive ways to teach dyscontrol often inconsistent with a and other unique treatments. An evaluation the neurotypical world. There are children and adults with these chal- person’s age or intellectual maturity) of an individual’s particular issues should particular strategies to address this lenges how to cope with these differ- are most often considered to be child- lead to a recommendation of what types of issue. If this is a significant problem, ences or may instruct families or hood issues, but adolescents and adults approaches would be most beneficial. As it would be wise to ask a provider schools who may not understand this with AS may continue to struggle with individuals with AS vary so widely it is im- about what direction treatment for type of disability in the context of an behaviors that appear inappropriate, portant that the professional understands that this issue might take. otherwise very intelligent person. and even frightening to others. Melt- treatments must be as diverse as the individu- downs may be caused by high levels of als who need them. Any of the following • Many, but not all, individuals with AS • So-called comorbid conditions are anxiety, rigid expectancies, confronta- may be an individual’s prominent issue, and have difficulty with facial recognition those that co-occur with something tional interactions styles of authority changes in age or circumstances may moder- and/or understanding nonverbal com- else. Anxiety disorders and depres- figures and various other difficulties ate some problems but reveal others. munication. There are evidence-based sion are more common for individu- specific to AS. Recognizing the par- interventions that address these spe- als with AS than they are in the neu- ticular cause and having an array of • Individuals with AS may have par- cific issues and treatments that can rotypical population (Matilla et al., treatment strategies is critical to helping ticular difficulty with the speed of improve function in this area. 2010) and require specific knowledge the child processing visual, social, or auditory of Asperger Syndrome to be treated information. When everyone around • Many individuals on the autism spec- effectively. Gaus (2007) published a see Psychologist on page 29 AUTISM SPECTRUM NEWS ~ SPRING 2010 visit our website: www.mhnews-autism.org PAGE 25
Internet Resources for Science-Based Treatment of Autism Spectrum Disorders
By Lauren Agoratus, MA record_id=10017&page=R1. treatment for autism. They should also Parent The American Academy of Pediatrics remember that if their child is referred to Family Voices NJ (AAP) also has guidelines on treatment. a specialist, the provider should be a pe- They focus mostly on behavior manage- diatric specialist who works with chil- ment and “habilitative therapies” such as dren. The Centers for Disease Control here are a variety of treatment speech, occupational, and physical ther- guidelines for autism treatment can be options for children with au- apy as well as educational interventions. found at: www.cdc.gov/ncbddd/autism/ tism. Families may be over- The AAP stresses the importance of fam- treatment.html. These guidelines discuss whelmed with the number of ily involvement and parent/professional the effectiveness of behavioral interven- Tdifferent therapies available and how to teamwork. At this point, there are no tion, therapies (speech, OT, PT), sensory figure out what’s best for their child. It’s medications specifically recommended integration, communication techniques, important to remember that the cause of for autism but pharmacological options dietary approaches, and medication. autism is not known (possibly multiple are also mentioned in the guidelines. These internet resources offer vital genetic and environmental factors), and They can be found at: http:// information for families of children with as of now there is no cure. But there is aappolicy.aappublications.org/cgi/ autism to learn about what evidence- treatment, and hope. content/full/pediatrics;107/5/e85. based clinical treatment best practices Research shows that early interven- The AAP also recognized that there may are available. tion, which means treatment at a younger be secondary conditions possibly associated age, is the most effective and has the best with autism such as sleep disorders, gastro- Lauren Agoratus, MA is the parent of a outcomes for children with an autism intestinal problems, and seizures. They also child with autism/kidney disease. She is the spectrum disorder. A good starting point discuss consideration of “complementary” New Jersey Coordinator of Family Voices, for families to sift through the tremen- Lauren Agoratus, MA medicine. This article can be found at: national network that works to keep families dous amount of treatments available is to http://aappolicy.aappublications.org/cgi/ at the center of children’s health care for find out what science says works. searched interventions proven effective content/full/pediatrics;120/5/1162#SEC3. children with special healthcare needs. “Educating Children with Autism” was a and can be can be read online for free at It is important for families to recog- Families can find free help in their state at national study of all the clinically re- http://books.nap.edu/openbook.php? nize that there is currently no single www.familyvoices.org/states.php.
Compass Project from page 19 are intrinsically motivating. Ultimately, such Often these teens and young adults in the community, Compass fosters an individuals find themselves unhappy and have unrealistic expectations. The pro- environment where individuals on the differences identify, plan for, and achieve dissatisfied with their work. As a culture, we gram must then offer advice on how to Autism Spectrum can translate their skills a realistic career and educational direc- spend a majority of our lives working, even explore alternative, but related visions of to the workplace and their neighborhood. tion. The program does not accomplish more time than we spend with our family, their goals and aspirations. If clients on Compass clients have battled all sorts of this through a regimented evaluation of a friends, or in leisure pursuits. Since it is the spectrum decide to pursue a college preconceived notions and low expectations client’s ability to collate and copy papers, necessary to earn a living, everyone might education, the Compass Bridges program imposed by a society that has not histori- fold clothing, or bag groceries. We ac- as well do something they enjoy. The Com- provides support services on nine college cally understood their needs. Participants complish this by evaluating each unique pass Project realizes that this is especially campuses throughout Long Island, West- in Compass often go on to graduate high individual, and not by simply seeing how crucial for people with special needs. chester, Manhattan, and Queens County, school and college, and become happily he or she fits into society’s preconceived Compass Project’s mental health profes- with expansion in the works to many employed. With individualized attention notion of what a person on the Spectrum sionals help individuals gain an under- other institutes of higher education. from trained professionals, a solid educa- is capable of doing to earn a living. standing of their unique interests, values, The JCCA Compass Project under- tion plan, and patience from the commu- The Compass Project aims to educate and personality preferences in order to help stands that clients often require additional nity, every person on the Autism Spectrum clients through exploration of self and work. develop a realistic picture of what it takes assistance in developing their social and can build an independent, fulfilling, and First, Compass staff speaks with an individ- to achieve one’s goals. This is accom- interpersonal skills. The program offers successful life. ual and administers a variety of assessments plished primarily through finding experien- social and work skills programs for high Jewish Child Care Association is re- to help gain an understanding of three im- tial internships where clients gain a deeper school teens and college-age youth in the sponding to the scarce and often unmet portant factors: interests, values, and person- understanding of the types of work that are Bridges program. Additionally, Compass needs of high- functioning ASD and other ality preferences. The conversation focuses most interesting to them. The variety of works directly with the internship staff to special needs high school and college- on these factors because Compass clients internship and job settings has been as- help sensitize employers to special ac- aged youth in this region by providing are more likely to be successful in a work tounding. Examples include: a marionette commodations clients might require. hands-on, skill-based services setting if they have passion and drive. Un- puppet theater, an animal shelter, a local Working with parents helps them recog- fortunately, a large number of people in the library, a physical therapy clinic, an as- nize their children’s strengths and develop Elise Hahn Felix, LCSW, is Director of world—whether neurologically typical or sisted living home, summer camp pro- realistic expectations of what their chil- the Compass Project at the Jewish Child with special needs—don’t work in jobs that grams, and a cable television studio. dren can accomplish. Through education Care Association.
Free Support Group For Families of Adults with Asperger's Syndrome and High Functioning Autism
The focus of the support group is to assist families in understanding the complex issues related to their adult child impaired with Asperger's Syndrome or High Functioning Autism. At many of our meetings, we have speakers address various topics of importance related to these syndromes.
For further information contact the facilitators: Bonnie Kaplan - [email protected] | Judith Omidvaran - [email protected]
Socialization and Life Skills Group For Asperger's Syndrome and High Functioning Autistic Adults
Focused on: Employment & Vocational Issues, College Coaching & Supports, Socialization Self-Advocacy, Dating, and Relationships
For further information contact the facilitators:
Patricia Rowan, LMSW - (914) 736-7898 - [email protected] | Susan Cortilet, MS, LMHC - (845) 406-8730 - [email protected]
Meeting Dates: 5/23, 6/13
Westchester Arc The Gleeson-Israel Gateway Center 265 Saw Mill River Road (Route 9A) Hawthorne, NY 10532 PAGE 26 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SPRING 2010 Task Force from page 20 • Provide information and training on the • Establish mechanisms to support col- • Identify the number of individuals in assessment and diagnosis of ASD to laboration between State agencies New York State who fail to meet ASD research. Among the respondents, it physicians, mental health professionals and school districts in transition plan- service eligibility criteria and their was clear that New York State’s top prior- and families throughout the state. ning for students. unmet service needs. ity should be providing services to indi- viduals. After that, providing training to Information Dissemination • Identify effective crisis avoidance Coordination of Research service providers, educators and families and response practices and promote was the second most important activity to • Develop and maintain a New York these practices throughout New Develop a State Autism Consortium undertake. State Web site on autism that provides York’s service systems. to advance greater understanding of Public input to the Task Force also re- information on ASD and New York ASDs and effective treatment and ser- vealed the greatest need for services to be State’s autism initiatives and services. • Provide information to parents regard- vices.\\Make the study of ASD treat- in special education, followed by behavior ing reliable, evidence-based practices ment methods and the translation of management training, access to clinical • Use effective, non-Internet mecha- to address behavior issues in the research results into improved practices specialists with ASD expertise, transition nisms to inform New Yorkers about home, classroom and community. priorities for a New York State Autism services to assist students as they leave ASD, the need for early detection, and Consortium. school, and respite opportunities. The lack New York State supports and services. • Monitor ongoing national studies re- of insurance coverage and the cost of ser- garding barriers to employment for Continuing Momentum vices were identified as significant obsta- • Increase translation services, promote young adults with ASD and effective and Gaining Ground cles to service delivery, as were the avail- awareness of translation services and practices for supporting individuals ability of services and trained educators, where possible, provide information with ASD in employment and initiate The Task Force was challenged to clinicians and direct support professionals. in Spanish. improved New York State services for identify a State response to the needs of Respondents voiced the need for all parties adults with ASD seeking employment. its citizens with ASDs that can occur – teachers, families, physicians, direct sup- • Implement training programs to in- within the current economic decline and port staff and emergency responders – to crease the cultural awareness and • Disseminate information on best practices resulting budget crisis. Its findings and have greater information, information on competence of service coordinators and training related to supported employ- recommendations speak to what the behavior management, evidence-based and case managers. ment services and fostering successful State must do, what the needs demand, treatments, accessing services, and local school-to-work transition for students but could fall victim to shortages in resources. Finally, the public told the Task • Increase support and technical assis- with disabilities, including ASD. staff and resources. The Task Force Force that ASD research must focus first tance for agencies service non- members intentionally went further, on early identification of young children English speaking communities. Coordination of Services however, to identify short-term steps with ASD and secondarily on the develop- that will direct meaningful and manage- ment of new treatment and educational Adequacy and Capacity of Services • Develop and implement training pro- able actions State agencies can take to- methods. grams throughout New York State to day, within the present fiscal crisis, to • Promote the use of evidence-based ser- help service coordinators work in move New York’s services systems to- Findings and Recommendations vices through guidelines and training. multiple systems. ward the recommended actions and to- ward greater effectiveness and effi- With this information, the Task Force • Identify and disseminate information • Explore innovative forms of deliver- ciency. These very specific short term began searching for possibilities within the on evidence-based practices that sup- ing primary care which can provide steps are described in the Task Force intricate workings of New York State’s ser- port improved educational outcomes medical care and social and educa- report and represent the next chapter in vice systems. Five workgroups looked for students with ASD. tional services coordination. ongoing agency collaboration that must closely at how New York State could better remain at the heart of New York State’s respond to needs related to the early identifi- • Promote the availability of educa- • Identify ways to ensure that families response to autism. cation of children with ASDs, the adequacy tional opportunities related to ASD and individuals are provided access The Task Force report was submitted and capacity of State services, the coordina- for teachers, administrators and re- to service coordination. to Governor David Paterson, the leaders tion of services for individuals over their lated service personnel. of the New York State Senate and As- lifetime, information dissemination, and the • Examine the need for guidance re- sembly, the New York State Board of coordination of ASD research. Over several • Continue investing in residential ser- garding payment by private insurers Regents, and the Inter-Office Coordi- months, the workgroups identified 13 sepa- vices that support individuals living in for medical and mental health ser- nating Council which promotes and di- rate findings of need and numerous recom- their own home, their family homes or vices associated with ASD. rects solutions to cross system needs. mendations for overcoming those needs. in provider-managed housing. Through the Task Force process, New • Publish clear, concise information York’s service agencies effectively Recommendations of the New York State • Develop a state-of-the-art model for regarding eligibility criteria for ser- identified the course ahead, both in the Interagency Task Force on Autism delivering residential services for vices provided by the different New long and short term. They are now A Call to Action for New York State young adults and adults with ASD. York State agencies. poised together at the starting line, with a shared line of sight on the immediate Early Identification • Develop sufficient in-state Children’s • Explore options for clarifying and steps before them. Residential Program opportunities for streamlining the eligibility and intake For a copy of the Task Force report, • Increase the use of screening for ASD children whose needs require special- processes for New York State’s nu- visit: www.nyacts.com and click on “New in young children. ized residential settings. merous service systems. York State’s Response to Autism.”
(www.nyacts.com) now provides citizens In addition to information on autism Task Force on Autism and the develop- with a one-stop, online resource about and New York State services and sup- ment of NYacts: autism and New York State services. ports, NYacts provides news stories “NYacts will bring reliable, current related to ASDs, the answers to fre- • Office of Mental Retardation and De- information to the public about autism quently asked questions, profiles of velopmental Disabilities (Co-chair)
and assist New York’s families to easily New York citizens of all ages living • State Education Department (Co-chair) find State services for their loved ones with ASDs, and information on impor- New York State Launches • Department of Health with ASDs,” said New York State Of- tant laws, events and trainings, New Autism Web Site – NYacts! fice of Mental Retardation and Develop- York’s network of Centers for Autism • Office of Mental Health
mental Disabilities Commissioner Diana and Related Disabilities (CARDs), and • Office of Children and Family Services Jones Ritter. New York State’s many autism initia- n examining the many needs of Because individuals with ASDs may tives. A cross-agency committee will • Developmental Disabilities Planning New Yorkers related to autism, the Council need services from different State sys- maintain the Web site. As scientists New York State Interagency Task tems – education, health, mental health and others improve our understanding • Commission on Quality of Care and Force on Autism found a tremen- and developmental disabilities services of ASDs and identify effective prac- Advocacy for People with Disabilities dousI need for information about autism – NYacts offers a dedicated site from tices in diagnosis, assessment, treat- • Council on Children and Families spectrum disorders (ASDs) and about which people can get the information ment and education for individuals the many services and supports avail- they need without any prior knowledge with ASDs, the committee will con- • Office of Temporary and Disability able to individuals and families from of New York’s service agencies. tinue to promote and expand NYacts as Assistance New York State agencies. In response, “NYacts has resulted from and will a means to bring the latest information • Office of Alcohol and Substance the Task Force created NYacts ─ New continue to demonstrate how our govern- to a wide range of parties. Abuse Services York’s Initiative for Adults and Children ment is working together in an effective The following New York State on the Autism Spectrum. NYacts and integrated way,” said Ritter. agencies participated in the Interagency • State Insurance Department AUTISM SPECTRUM NEWS ~ SPRING 2010 visit our website: www.mhnews-autism.org PAGE 27 Cartwright Interview from page 9 ticular behavioral domain, but we need mechanisms that give rise to the disabil- A: It is never too late to learn and grow to be equally vigilant of the side effect ity. This has happened with Fragile X and develop. We are discovering that the huge media story and many parents spent issue and the ongoing safety of the Syndrome where the gene has been iden- brain has an amazing ability to adapt and thousands of dollars and traveled long medication. We need to constantly tified and treatments are being tailored to change. In the past it was assumed that distances to find centers that would weigh the benefits versus the risks of this syndrome. And this is what we can there are windows of opportunity and if give their children intravenous infu- being on a psychotropic medication, look forward to in the field of autism. you intervene during that period, then sions of this substance with no follow- that’s the efficacy (how effective is this Another exciting development is in improvement can occur but if you inter- up and no adequate evidence of posi- medication in reducing the severity of the translation of findings from animal vene outside of that window, then treat- tive outcomes. Great public pressure the symptom that you have identified), studies to clinical treatment. For exam- ment won’t help. That’s just not the case. was placed on the National Institutes of in relation to the safety (ongoing vigi- ple, a recent study published in the Pro- People of all ages can improve given the Health to invest millions of dollars in lance in determining short-term, me- ceedings of the National Academy of proper type of biological and behavioral Secretin research. Since then many dium-term, and long-term side effects). Science showed that a small group of treatments. New treatments and interven- studies have shown that Secretin has This requires monitoring over time. A adults with high-functioning autism and tions are currently being tested and many no ability to improve the symptoms medication may work well initially and Asperger’s syndrome who were given of these show promise. There are life- associated with autism. The hype was then shift. For example, parents may oxytocin inhalations showed distinct long opportunities for your child, adoles- never based on evidence. describe a significant improvement in improvements in their sociability and cent or adult with an ASD to participate So what did we learn from that? Be anxiety in the first couple of weeks but distinct changes in the way that they in effective interventions. careful of anecdotal reports especially two months later there may be a subtle looked at social signals. This included when they make claims of significant but important deterioration. It’s impor- the way that they viewed faces — where Charles N. Cartwright, M.D., is Di- improvements based on the experiences tant to remain vigilant and keep adjusting they would spend more time looking at rector of the YAI Autism Center at the of just a few individuals. When a clini- treatment. eyes in contrast to looking at other parts YAI Network. He is an expert in the diag- cian prescribes a particular treatment, it of the face that were not as socially rele- nosis and treatment of autism spectrum should be based on knowledge of the Q: What evidence-based treatments do vant. This study is promising because it disorders in children, adolescents and latest scientific literature, as well as a you feel hold great promise for your pa- points to a treatment that may improve adults. He is a board certified child and very good assessment of the problems tients with autism? Is there anything new the core symptoms and behaviors of peo- adolescent psychiatrist and a faculty faced by that particular patient. Let’s use on the horizon? ple on the autism spectrum, namely so- member in the Department of Psychiatry, the example of obsessive compulsive cial/emotional skills. We have a lot to Child and Adolescent Division, at the symptoms in a child with autism. I would A: The Early Start Denver Model that learn about oxytocin inhalations because University of Medicine and Dentistry of clearly identify the behaviors/symptoms was published in a manual form late last we are not sure what the dose should be, New Jersey. that will be targeted; obtain a baseline year demonstrated clearly that an early how often it should be administered, who Previously, Dr. Cartwright served as measure of their severity, frequency, and intervention model that is short-term (10- might benefit, and most importantly, the Director of the Autism Center at how much they interfere with function- 12 weeks) training parents to interact and what the safety issues are. So we need to UMDNJ where he directed autism clini- ing by talking to the family and using a intervene with their children can signifi- learn a lot more as we pursue this poten- cal, research and educational outreach scale such as the Yale-Brown Obsessive cantly improve the developmental out- tial line of treatment. activities. He ran a large clinical prac- Compulsive Scale; and then choose be- come of their children. Models of inter- tice, lectured widely on autism-related tween the treatments that have been vention that use both relational and Q: It certainly is a very exciting time topics, advocated for legislative and proven effective in the scientific litera- structured behavioral techniques (such as with all the groundbreaking research and policy initiatives as a member of the ture. My follow-up will include a reas- Applied Behavioral Analysis) in an inte- new science being conducted in the au- New Jersey Governor’s Council on Au- sessment using the same scale so there is grated way can lead to significant im- tism field. tism, which enhanced autism clinical some objectivity in measuring progress provements. Studies show that the earlier centers throughout the State of New over time. we make the diagnosis and offer inter- A: Absolutely. When I speak to medical Jersey, and conducted research in au- In addition, it is important to consult ventions, the better the outcome. Chil- students and residents who are consider- tism genetics, neuroimaging and psy- with teachers, therapists and other pro- dren can improve their social and emo- ing careers, I stress how interesting and chopharmacology. fessionals working with the child about tional skills, their language, their level of groundbreaking the field of autism spec- Dr. Cartwright completed a gen- how they experience the child in differ- curiosity in their environment, and have trum disorders is and how optimistic I eral psychiatry residency in Cape ent settings, and combine this informa- fewer repetitive behaviors. feel about the rapid progression of new Town, South Africa, as well as fellow- tion with the reports given by the par- From a pharmacological and biologi- science which is being incorporated into ships in child and adolescent psychia- ents about the behaviors. I ask, “How cal point of view, the promise is what current clinical practice every day. The try at New York University/Bellevue much change has there been?” I am genetics is bringing to this field. New research has as its goal to improve the Hospital and autism research at the aware that there may be a positive genetic syndromes are being identified. quality of life for people with autism Seaver Autism Center for Research change, no change or a negative change Some people who were given the diagno- spectrum disorders and their family and Treatment at the Mount Sinai in symptoms. When prescribing medica- sis of autism may be found to have a members. School of Medicine. tion, it’s always important to have a different diagnosis based on genetic test- For more information about the YAI very detailed assessment of safety. We ing. With time, we will be able to tailor Q: What hopeful message would you like Autism Center visit yai.org/autism or call might see great improvement in a par- treatments that are specific to the genetic to leave with parents? 1-888-YAI-AUTISM (1-888-924-288476).
Vaccine Court from page 7 stacked against children in vaccine court your child was diagnosed with autism and masters did. They looked at the data. because the court is government run, hard to accept the idea that a child may Hopefully after today’s ruling, we can to be compensated. And if you look at investigating a government- struggle and have huge challenges all put this issue behind us and move forward other rulings, this court tends to err on the recommended vaccine schedule,” but the their life. It’s also natural to want to and direct our scarce autism research dol- side of overcompensating to avoid a big facts do not bear out this claim. In fact, blame someone or something. But fami- lars to studies that will provide new infor- spillover into civil courts. Another goal of over 2,400 vaccine court plaintiffs (80% lies need to look at the data. Parents can’t mation about what causes autism and how the vaccine court is to avoid massive civil of whom were children) have received be so focused on anger that they lose sight best to treat it. litigation that could put us back where we compensation from the vaccine court. of what the science is saying because were in the early 1980s where companies The difference is that these families were that’s not in the best interest of the Alison Singer is President of the were exiting the vaccine manufacturing able to tie a reported vaccine injury to kids. At the Autism Science Foundation Autism Science Foundation business over fear of litigation. the vaccine. The plaintiffs in the autism we always encourage parents to look at (www.autismsciencefoundation.org). Several anti-vaccine organizations cases were not. the science and make decisions based on She has a daughter and an older have complained that the “deck is It’s natural to want to understand why the science. And this is what the special brother with autism.
68 Essex Street 915 West End Ave. Ste. 1A Millburn, NJ 07041 New York, NY 10025 973.376.8890 917.692.1281 NJ Lic. No. 4204 NYS Lic. No. 8960 Barry W. Klein, Psy.D. Psychologist Child, Adolescent, Adult, Family PDD, Autism, Asperger’s Syndrome, [email protected] ADHD, Behavior Problems, Parenting, School Consultation, Supervision PAGE 28 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SPRING 2010
Transition from page 21 with a disability.” Under CSE your child As a parent, you have the right to dis- • You do not have to agree with the must have an educational classification agree with the school district’s IEP. You school’s recommendations. There are program and/or discussion with your in order to receive services. Educational may disagree with the findings of their due process procedures and laws child’s current teachers. classifications are different than medical evaluations and the services they think when you do not agree. There are diagnoses. For example, your child should be provided based on the results of particular laws and rules that apply to • Obtaining information from you as might have a medical diagnosis of their evaluation. You are entitled to re- the transition from CPSE to CSE. the parent. ADHD; however there is no educational quest an Independent Educational classification that directly corresponds to Evaluation (IEE). An IEE is defined as If you don’t agree with the district’s • Kindergarten screening (it is required ADHD. This does not mean that your “an evaluation conducted by a qualified evaluations you may request a private that all children be screened for kin- child will not get services. There are 13 examiner who is not employed by the impartial evaluation known as an IEE dergarten). classifications which are used. These public agency responsible for the educa- (Independent Educational Evaluation). include: Autism, Deafness, Deaf- tion of the child in question.” (Steedman. There are procedures for making this The CSE will determine whether any Blindness, Emotional Disturbance, Hear- W). An evaluation is not limited to educa- request. other evaluations are necessary and if ing Impairment, Learning Disability, tional or cognitive skills. It may include deemed necessary will conduct them. De- Mental Retardation, Multiple Disabili- the evaluation of any skill related to the Special Considerations for High Functioning cisions will be made from evaluations, ties, Orthopedic Impairment, Other child’s educational needs. The results of Children on the Autism Spectrum professional reports and parent input. Any Health Impairment, Speech or Language the IEE must be considered by the school new evaluations should take place by Impairment, Traumatic Brain Injury and district. This does not mean that the dis- School-based evaluations often use April or March prior to September entry Visual Impairment. Children who have trict must implement the recommenda- measures that are not sensitive to the com- into kindergarten. A meeting with the an autism classification are entitled by tions of the IEE but they must consider it. plex challenges that these children have. CPSE will take place toward the end of NY state law to particular services which Many times parents pay privately for an For example, these children often have your child’s stay in the preschool program may include parent training for behavior IEE. The district is responsible for pay- excellent vocabulary (semantic knowl- to recommend special education services problems as well as daily speech and lan- ment when: edge). However, they are weak in prag- (if any) for kindergarten. The CSE will guage therapy. matic skills (social aspects of language then conduct a meeting with the preschool In addition, NY State has developed 1. The school district does not have the and communication). Children with HFA team. Sometimes these meetings occur guidelines for educational programs for personnel to conduct a particular type (High Functioning Autism) will often consecutively. If at all possible, it is better children with autism. They can be found of evaluation (i.e., a psychiatric perform well on standard language meas- for parents to ask for the CPSE meeting to at www.vesid.nysed.gov/specialed/ evaluation) that the CSE has recog- ures because standard measures are so take place before the CSE meeting and autism/apqi.htm. The guidelines were nized may be necessary. loaded on semantic knowledge. It is im- not have them one after the other. It can developed by a group of professionals portant that parents request that pragmatic be daunting for parents to absorb all the who were experts in autism spectrum dis- 2. When the school district determines skills be evaluated or observed. Fre- information, and it is better if parents orders and describe criteria necessary for that an IEE is necessary. quently school therapists are unfamiliar have time to think about and digest the appropriate educational programming for with just how to assess these issues and recommendations from the preschool be- students with autism. Sometimes a district is forced to reim- they often go unmet unless parents are fore meeting with the CSE. If there must burse parents for an IEE after it has refused well informed and assertive. be consecutive meetings, then it is advis- The Individual Education Program (IEP) to pay for one. This may happen when: Children with HFA have social skill able that parents familiarize themselves problems as a core deficit. It is important with the transition recommendations of An IEP may also be called an Individ- 1. The district may be required to pay that these areas be included in any IEP the preschool team. ual Education Plan. A school-age IEP will when the IEE that the parent obtained and that annual goals are developed to be developed at the CSE meeting. It provides information that affects the help students with these deficits. Parents What Types of Services Exist? should include: child’s education, services, or place- should insist on evidence-based programs ment. for social skill deficits. These types of There are a range of services that dis- • A description of your child’s “present programs provide opportunities for prac- tricts may provide. These may include levels of educational performance.” 2. If the parents disagree with a school tice and foster family communication to related services such as psychological, This includes how your child’s dis- district evaluation and request an IEE ensure generalization of skills beyond the speech and language, physical and occu- ability affects her involvement and at public expense and the school dis- social skill development setting. pational therapy, social work services, etc. progress in the general curriculum. trict refuses to pay for it, unless the Most school-based evaluations do not These services will be given a certain district requests a due process hearing assess executive functioning and again number of times per week. Sometimes • Measurable annual goals for your and the hearing officer rules that an school personnel are often unfamiliar they are given as “pull-out” services child to reach and who is responsible IEE is not necessary. with how to evaluate them. These skills where the child goes to another location for helping the child reach these which underlie most tasks include moti- and sometimes they are given as “push- goals. Parents are permitted to choose any vation, persistence, flexibility of thought, in” services where the appropriate service qualified evaluator for an IEE. Some- getting started and organization. Most is provided in the classroom. Sometimes • A statement of the special education times a school district has a list of peo- children with Autism Spectrum Disor- there is a combination of the two. Supple- and related services needed for the ple they use to perform IEEs. Parents ders have some difficulties in these areas mentary services include services that child to meet the goals and to pro- are not required to choose only from which makes learning more difficult for support the student in the regular educa- gress in both the general education evaluators on the list. Basically, the them. It is important to make sure that tion setting such as: one to one parapro- curriculum and extra-curricular and point of obtaining an IEE is to get an- these challenges are evaluated and ad- fessionals, assistive technology and con- nonacademic activities. other expert opinion that will better dressed in an IEP. sultant teachers. Testing accommoda- help the school district understand the tions may include testing in another • Supports for the student’s teacher to needs of your child. It is important for Advocacy Tips venue, increased test time, use of a calcu- help reach the goals (i.e., consultant parents to seek out evaluators who have (From Special Education Process in lator and modification of test items. Spe- teacher, training). experience and expertise in these types NY State - www.eastislipsepta.org) cial Education means that your child is of evaluations. entitled to “specially designed instruc- • The student’s placement and when it • Be involved in every step of your tion” that meets the particular needs of will begin. Parent’s Responsibility child’s life. your child. This may happen in a regular education classroom with pull-out re- • If your child will not be participating It is very important that parents have a • Know your rights in the education source room, an inclusion or co-teaching with typically developing peers then good understanding of their child’s process. classroom where there is a special educa- the IEP needs to provide an explana- strengths and weaknesses and how these tor and a regular educator or any combi- tion of why this is appropriate and the may impact the student’s functioning in • Keep lines of communication open nation of the above services. It will de- extent of non-participation. an educational setting. You are your with the people who deal with your pend on what your child’s needs are and child’s best advocate. child (provide positive as well as how the district proposes to meet those Re-evaluation negative feedback). needs. Some children will not receive any • Make sure that you have familiarized services after preschool because it is Annual goals and placements are re- yourself with evaluation results, ob- • Always work toward solutions when deemed that they are no longer necessary. viewed at least yearly. They can be re- servations, and progress reports. there is a problem. Insist that your viewed more frequently if a particular child’s educators create positive plans Will My Child Be Classified? program needs revision. Both parents and • Make notes to bring to the IEP meeting. for change to correct any problem the school district have the right to con- that exists. Be collaborative. Yes. This is one of the major differ- vene a new CSE meeting to modify a stu- • Ask questions. ences between CPSE services and CSE dent’s program. Every three years there is • Be persistent. services. Under CPSE your child had a a more in-depth review when your child • Know the continuum of services your generic classification, “preschool child will be re-evaluated (triennial evaluation). district provides. see Transition on page 30 AUTISM SPECTRUM NEWS ~ SPRING 2010 visit our website: www.mhnews-autism.org PAGE 29 Psychologist from page 24 well know professionals who have pro- As an adult with AS, Dubin stresses that sary to work out what can best help indi- vided high quality care and they may be asking good questions is important to find- viduals with such diversity of being. • or adult with AS remain in inclusive able to make specific recommendations. ing someone who can really be of help. As • Be prepared to let an introductory ses- settings and enjoy an acceptable quality University programs that train profession- has been enumerated above, there are so sion be just that. If a psychologist can- of life. Finding a psychologist who als in autism spectrum conditions may also many variations of people and problems not communicate an initial concept for understands this issue may make the be a source of this kind of information. with AS that one should be seeking a per- treatment, he or she may be too inex- difference between regular and special Attending conferences about autism spec- son who “takes a highly individualistic perienced. It is not uncommon to education, employment or none, or trum where clinicians present can also provide approach with each client and doesn’t use meet two or three psychologists before developing relationships or not. a window on a therapist’s level of knowledge, just one particular modality with everyone making a decision of who is the best attitudes, and manner. In addition, a confer- who has Asperger’s” (Dubin, 2009). person to provide treatment. • Social cognition is a prerequisite for ence venue can be a good place to network. Questions that can help you determine
the development of social skills, yet Networking among friends, acquaint- who can best help should include: In addition, even if you have been in many people try to teach specific so- ances, or professionals you know may • What is your specific training about AS? treatment for some time, whomever you are cial skills in a vacuum. The develop- also be a good beginning. However, even working with should be willing to review ment of social ability relies on learn- positive recommendations do not negate • How long have you been working progress every so often so that the joint de- ing to think socially and having an the need to ask important questions about with individuals with AS? cision to continue, refer elsewhere, or dis- opportunity to practice and generalize. experience and understanding of the wide • Do you specialize in children or adults? continue treatment can be fully considered. Many different kinds of professionals variety of issues that individuals with As- There are a wide variety of professionals may offer social skills training. Geller perger Syndrome may present. • What is your treatment orientation? who provide psychotherapy including psy- (Autism Spectrum News, 2008) de- The internet has lists of individuals • How do you assess what kind of inter- chologists, psychiatrists, social workers, scribes ways of judging the usefulness who claim experience with Asperger Syn- vention you choose for your clients? mental health counselors, or marriage and of particular social skills interventions. drome. In addition, there are multiple sites • family therapists. Genuine understanding of Professionals in private practice, clin- about Asperger Syndrome that can be a Are you willing to learn about AS Asperger Syndrome may be more important ics, or schools should be able to justify starting point for understanding specific and seek mentorship from a knowl- than any particular degree, and finding the their approaches based on research issues and finding people with expertise. edgeable professional in order to pro- right match of knowledge, approach, and and the individual’s particular skill (www.aspergersyndrome.org, www.faaas.org, vide competent treatment? authenticity is the key to effective treatment. needs. Psychologists, speech and lan- www.autism-society.org, www.autismspeaks.org, • Do you have a working relationship guage pathologists, social workers, www.tonyattwood.com.au, www.grasp.org, with other clinicians in case other Lynda Geller, PhD, is Director of the mental health counselors and others www.ahany.org, www.aane.org). As with any- treatment modalities are needed? Institute for Cognitive Diversity at the Bank may provide useful social skills inter- thing on the internet, resources found this Street College of Education. She is the foun- ventions, but should be queried as to way should be carefully vetted. In addition to specific questions, it is der of the Asperger Center for Education their program and experience deliver- important to try to gain a feeling for the and Training (www.aspergercenter.com), a ing it, and their specific plans for gen- What Questions Should I Ask? person’s level of warmth and understanding. collaborative effort designed to 1) provide eralizability in the real world. evidence-based, practical, current informa- Nick Dubin (2009) has specifically de- • Explain why you are seeking treat- tion about Asperger Syndrome and related Finding a Psychologist scribed approaches for assessing psycho- ment and listen to how the person conditions and 2) develop and provide inno- therapists. He notes that it is particularly responds to your particular issues. vative services to the community of children There are many organizations that may difficult to find qualified therapists who • Assess if the person expresses genuine and adults with Asperger Syndrome and be able to help individuals or families get treat adults. Of particular importance, in his caring for individuals on the spectrum. their families. She is also in private practice started finding a suitable psychotherapist. experience, is to avoid professionals whose A certain level of investment is neces- in New York City. Parent groups or adult support groups may lack of understanding of AS causes harm.
Effectiveness from page 14 the effectiveness of a treatment by using a Dr. Thomas Zane is an Associate Pro- tionship Development Intervention pro- pretest on one group of participants, then fessor in the School of Education and the gram. Autism, 11, 397-412. is an assumption that variables other than applying a treatment, followed by a reas- Founder and Director of the Center for the treatment could have produced the sessing the variables being tracked, will Applied Behavior Analysis at The Sage Jacobson, J. W., Foxx, R. M., & Mulick, changes in what is measured, one must always be open to skepticism of linking Colleges. Dr. Zane earned his Bache- J.A. (2005). Controversial therapies for conclude that the treatment probably did improvement to treatment. This type of lor’s and Master’s degree in psychology developmental disabilities: Fad, fashion, not cause the changes. design will never allow strong confidence at Western Michigan University and his and science in professional practice. The pretest-posttest design is fatally in the belief of a cause and effect connec- doctorate in Applied Behavior Analysis Mahwah, NJ: Lawrence Erlbaum Associ- flawed with respect to internal validity. tion between treatment and improvement. at West Virginia University. He is a li- ates, Inc. For example, if participants improve from All research is not equal in quality. Just censed psychologist in New York and pretest to posttest, the improvement could because a research study has been con- Massachusetts. Dr. Zane has published Krantz, S. (2009). Craniosacral therapy: be due to simply the participants maturing ducted and shows positive changes in some in various journals and books, presented Helping improve brain function. Re- (physically or psychologically) over the aspects of autism does not necessarily at regional, national, and international trieved March 8, 2010 at http:// course of the experiment. Consider a re- mean that the treatment was responsible for conferences, and been an invited lec- www.upledger.com/content.asp? search project done over the course of a those changes. Since autism is said by turer in Ireland and the Republic of id=76&mid=2. year with preschoolers with autism. An some to be a “fad magnet” (e.g., Jacobson, China. He is the Director of the Center improvement in assessment from pretest Foxx, & Mulick, 2005), parents and other for Applied Behavior Analysis at The Linderman, T. M., & Steward, K. B. to posttest (after one year) could be due consumers must critique any research Sage Colleges, and offers a Master’s of (1999). Sensory integrative-based occupa- simply to the natural maturation of the study that purports to show a positive ef- Science Degree in Applied Behavior tional therapy and functional outcomes in participants, rather than influence of the fect of a treatment, and try to determine if Analysis and Autism, a distance- young children with pervasive develop- treatment. Another possible threat to be- the positive changes could be due to other learning graduate program. mental disorders: A single subject study. lieving that a treatment caused any posi- explanations, or could only be due to the American Journal of Occupational Ther- tive changes relates to participants who treatment. By activating their “baloney References apy, 53, 207-213. were chosen on the basis of extremely low detectors” (Sagan, 1999), parents, care scores (or extremely low performance) on givers, and service providers can avoid Drew, C. J., Hardman, M. L., & Hosp, J. Rossignol, D. A., & Rossignol, L. W. the variable(s) being measured in the pre- adopting treatments that have no proof of L. (2008). Designing and conducting re- (2006). Hyperbaric oxygen therapy may test. Generally, extremely low scores will effectiveness, and thus be more likely to search in education. Thousand Oaks, improve symptoms in autistic children. often improve, and extremely high scores embrace treatments for which there is a California: Sage Publications, Inc. Medical Hypotheses, 67, 216-228. will often decline, given repeated assess- body of well-designed research supporting ments, just because they are so extreme. a cause and effect relationship. Research in Fraenkel, J. R., & Wallen, N. E. (2009). Rossignol, D. A., Rossignol, L. W., Thus, any study that involves participants autism treatments that purportedly shows How to design and evaluate research in James, S. J., Melnyk, S., & Mumper, E. because they scored very low or very high evidence of effectiveness, but that utilizes education. Seventh edition. New York: (2007). The effects of hyperbaric oxygen on the dependent measures, and that uses only pretest-posttest studies, needs to be McGraw-Hill. therapy on oxidative stress, inflammation, a pretest-posttest design, is open to this viewed with caution and must not be and symptoms in children with autism: particular threat and thus one cannot be- thought of as producing valid conclusions Gay, L. R., Mills, G. E., & Airasian, P. An open-label pilot study. MBC Pediat- lieve that the treatment caused any im- that allow consumers and caregivers to (2009). Educational research: Competen- rics. Retrieved on March 8, 2010 at http:// provement. believe that the treatment in fact works. cies for analysis and applications, Ninth www.biomedcentral.com/1471-2431/7/36. The one group pretest-posttest design Accessing clinical treatment services could Edition. Upper Saddle River, NJ: Pearson. is flawed by several additional internal be enhanced by better understanding of the Sagan, C. (1996). The demon-haunted validity threats not discussed here. The flaws in this basic and commonly used Gutstein, S. E., Burgess, A. F., & Mont- world: Science as a candle in the dark. reality is that any attempt to demonstrate research design. fort, K. (2007). Evaluation of the Rela- New York, NY:Random House. PAGE 30 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ SPRING 2010
Parent-Implemented from page 13 excluded from PCIT because it was as- family graduates from PCIT and is deemed Conclusion sumed that they would not respond to a independent with this method. Pretend Play, Social Engagement, Flexi- program that relied on social contingen- PCIT blends many therapeutic tech- Parents of autistic children are con- bility, and Reciprocity. cies. Recently, however, children with niques that are recognizable features of fronted with an array of treatment pro- While research into the efficacy of ESI milder forms of ASD who are motivated well-established therapies for children grams. Interventions for young children and other parent-implemented programs is by social attention have been referred in with ASD. For example, the emphasis on with ASD that are implemented entirely in its infancy, there is growing evidence of increasing numbers for PCIT due to the compliance training in the PDI phase of by parents are a new trend but one that the generic value of teaching parent re- growing recognition that it may be effec- PCIT is similar to ABA-based methods. occurs in the context of a growing interest sponsiveness in any intervention program. tive in reducing problematic behaviors. PCIT’s stress on parent-child interaction in increased parent involvement. When Siller and Sigman (2002) compared sam- PCIT is conducted in weekly, clinic- and the quality of the parent-child bond is parents are successful at learning and can ples of children with ASD with parents based, one-hour sessions attended by par- similar to central aspects of two, well- offer the required degree of intensity of showing low- and high-level synchroniza- ent and child together. PCIT differs from known methods of teaching children with therapy, these approaches may offer a tion skills (defined as following the child’s many other parent training programs in autistic disorder, Greenspan and Wieder’s more cost-effective and naturalistic method focus of attention and engagement) during that it involves live coaching, treats par- Floortime approach and the TEACCH of teaching skills and reducing problem an initial sample of play behavior. They ents and children together, and is data- model. Like pivotal response training behaviors than those that rely on service found that children of parents with high-level driven. During sessions, parents are in- (PRT), another time-honored, empirically- delivery by professionals. For these fami- synchronization skills had better joint atten- vited to play and interact with their chil- based approach, PCIT stresses the impor- lies, ESI and PCIT are two potentially tion skills a year later and better language dren. They are provided with a “bug-in- tance of using familiar play materials in a valuable ways to help their children. outcomes a full ten and sixteen years later. the-ear” microphone device with which a comfortable environment. Thus PCIT is a A preliminary study of ESI using a trained clinician coaches them from a one natural and familiar-feeling choice of Dana Levy, PsyD, is Clinical Psycholo- sample of young toddlers at risk for ASD -way observation room. treatment for young children with milder gist and Elizabeth Roberts, PsyD, is Neu- indicated significant improvement on PCIT has two phases of treatment. The forms of ASD. ropsychologist at the Child Study Center, eleven of thirteen social communication first phase is Child Directed Interaction or PCIT has strong empirical support with at NYU Langone Medical Center. measures. For example, gains were evi- “CDI.” CDI includes teaching parents spe- non-autistic groups. Controlled studies dent in the areas of joint attention (i.e., cific communication skills to use in play- have found PCIT to be effective in reduc- References gaze shifts, shared positive affect, gaze/ time routines that have been found to im- ing disruptive behavior. Other studies have point follow, and communicating for joint prove the parent-child interaction through found that gains are maintained over time. Masse, JJ, McNeil, CB, Wagner, SM, Cor- attention) for toddlers who entered treat- the systematic use of skills involving labeled There is to date only one controlled study ney, DB (2008). Parent-Child Interaction ment at two years of age (Wetherby and praise, imitation, and others during play. of PCIT for autistic children. This pilot Therapy and High Functioning Autism: A Woods, 2006). These preliminary results When a parent masters CDI skills, they then study found improvements in parents’ per- Conceptual Overview J Early and Intensive suggest that for families who are success- begin learning the second phase of PCIT, ceptions of their child and increases in Behavioral Intervention, 4(4), 714-735. ful at learning and can provide this inter- Parent Directed Interaction or “PDI.” PDI shared positive affect and parent positive vention at adequate intensity, ESI is a cost- includes teaching parents how to give effec- affect (Solomon et al., 2008). Clinician- Siller, M & Sigman, M (2002). The be- effective and naturalistic means of deliver- tive, developmentally-appropriate instruc- researchers at West Virginia University haviors of parents of children with autism ing appropriate early intervention to very tions or directives. In PDI, parents learn report success in the use of PCIT in build- predict the subsequent development of young children with ASD. While the long- how to use visual cues, simple, clear lan- ing language and conversation, reducing their children’s communication. J Autism term impact is yet unknown, the efficacy of guage, and a set of specific steps in response stereotyped, repetitive behaviors, and in- and Dev Dis, 32, 77-89. ESI is currently being evaluated in a large, to compliance and non-compliance. The creasing compliance, flexibility, and atten- multi-site randomized control trials (RCT) goals of PDI are individualized based on tion span in children with milder forms of Solomon, M, Ono, M, Timmer, S, Good- study funded by Autism Speaks. target behaviors identified for each child. ASD (Masse et al., 2008). They have lin-Jones, B (2008). The effectiveness of Parents’ use of CDI and PDI skills is coded found that PCIT was ineffective in more parent-child interaction therapy for fami- Parent-Child Interaction Training during each session, and results guide fur- severely affected children whose language lies of children on the autism spectrum. J ther coaching. Data including the coding of was developmentally below the age of two Aut Dev Dis, 38, 1767-1776. Parent-Child Interaction Therapy (PCIT) parent skills, the child’s behavior, and the years or who were not motivated by social is an empirically-based, time-limited par- frequency of skill practicing outside of ses- attention. With less affected children, Wetherby, AM, Woods, JJ (2006). Early So- ent training program that was originally sions is collected each week and reviewed however, PCIT showed signs of promise as cial Interaction project for children with autism developed to treat disruptive and opposi- with parents at the end of each session. The a possible “gateway” treatment that can spectrum disorders beginning in the second tional behavior in non-autistic young chil- data is analyzed and used to monitor treat- prepare children with milder forms of ASD year of life: A preliminary study. Topics in dren. Children with ASD were historically ment progress. Once PDI skills are met, the to cooperate with other learning therapies. Early Childhood Special Educ, 26:2, 67-82.
Autism Manual from page 7 Wreidt 2003 Revocable Trust. website at www.nationalautismcenter.org. conducts applied research and develops “The American Legion Child Welfare training and service models for practitio- and implement interventions accurately. Foundation is proud to help fund the Na- About the National Autism Center ners. Finally, the Center works to shape “We have been overwhelmed with the tional Autism Center’s project and pro- public policy concerning ASD and its response to this effort,” said Susan M. vide a resource tool that will enable The National Autism Center is dedi- treatment through the development and Wilczynski, PhD, BCBA, Executive Di- schools to more effectively serve the over cated to serving children and adolescents dissemination of national standards of rector of the National Autism Center. “We 329,000 students nationwide with ASD,” with Autism Spectrum Disorders (ASD) practice. created this manual specifically for educa- said Dennis Boland, President, American by providing reliable information, pro- In 2009, the National Autism Center tors as a means of promoting evidence- Legion Child Welfare Foundation, Inc. moting best practices, and offering com- completed an unprecedented multi-year based practice for ASD in schools be- To provide a wider audience of profes- prehensive resources for families, practi- project—the National Standards Project— cause we know that research-supported sionals and families with important infor- tioners, and communities. to establish a set of standards for effec- interventions are most likely to produce mation about the scientific evidence that An advocate for evidence-based treat- tive, research-validated educational and positive outcomes.” supports a broad range of treatments for ment approaches, the National Autism behavioral interventions for children on The development and publication of ASD, the National Autism Center is dis- Center identifies effective programming the spectrum. the manuals were made possible through seminating the manual, the 53-page Find- and shares practical information with For more information about the National support from the American Legion Child ings and Conclusions report, and the full families about how to respond to the Autism Center, please call 877.313.3833 or Welfare Foundation, Inc., and the Niel M. 160-page National Standards Report via its challenges they face. The Center also visit www.nationalautismcenter.org.
Transition from page 28 • Keep things in writing: Keep a Dr. Ilene Solomon is a clinical and www.vesid.nysed.gov/specialed/autism/ notebook for yourself of all com- pediatric neuropsychologist practicing in apqi.htm, captured from the internet • Never lose your cool. munications with school personnel Roslyn and Manhattan, NY. She is an as- 3/8/2010 and outside clinicians; use opportu- sociate of The Institute for Cognitive Di- • Bring along a respected member of the nities to back up conversations with versity at Bank Street College of Educa- “Special Education Process in NY State,” community or clinicians to meetings if you written confirmation - that way tion in New York City. She can be reached eastislipsepta.org/Special Education in feel your views are not being well re- promises will be kept and you will at (516) 747-8583. NYS.htm, captured from the internet spected. While you want to keep a partner- have proof of your active involve- 2/25/2010 ship and good relationships with your ment. References school district, sometimes it may help to Steedman,W. “Independent Educational include an advocate or even an education • Send all important information by “A Guide to Special Education,” b, cap- Evaluations: What? Why? How? Who lawyer in meetings. In addition, there are certified mail, return receipt re- tured from the internet 2/25/2010 Pays?” wrightslaw.com/info/ times when it might be in your child’s best quested. Keep copies of all docu- test.lee.steedman.htm, captured from the interest to request an impartial hearing. ments for yourself. “Autism Program Quality Indicators,” internet 3/6/2010 AUTISM SPECTRUM NEWS ~ SPRING 2010 visit our website: www.mhnews-autism.org PAGE 31
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