UTISM PECTRUM EWS TM A YOUR TRUSTED SOURCE OFS INFORMATION, EDUCATION, ADVOCACY, NAND RESOURCES WINTER 2012 FROM THE LOCAL, STATE, AND NATIONAL NEWS SCENE VOL. 4 NO. 3 Science Matters: The Latest Advances in Autism Research

New Trends in Brain and Tissue Banking for Autism Research

By Jerzy Wegiel, PhD, from about 1/2,000 in 1980 to 1/110 in Daniel Lightfoot, PhD, 2010 (The Center for Disease Control). Jane Pickett, PhD, and This decline has had a detrimental effect W. Ted Brown, MD, PhD on the progress of research on autism. Clinical studies of thousands of autistic patients have resulted in improvements in rofessor Giovanni Morgagni, of early diagnosis, and behavioral and phar- the University of Padua, pub- macological treatments. Genetic studies lished a book in 1761 entitled, are identifying gene mutations, single nu- “The Seats and Causes of Disease cleotide polymorphisms, and copy number InvestigatedP by Anatomy.” This book de- variations, as contributors to autism’s eti- scribed nearly 700 autopsies and demon- ology. However, the progress of clinical strated that disease is recorded in the pa- and genetic studies is not paralleled by a thology of organs in detectable ways. Dr. similar progress in postmortem studies of Richard Cabot’s review of the autopsy the brain. The brain of an autistic individ- records of thousands of patients at the ual is the main source of information Massachusetts General Hospital in the about developmental defects determining 1910’s revealed that the given clinical the cause of life-long disability and clini- diagnosis was wrong in about 40% of cal phenotypes. The decline in autopsy cases. These studies, which were also con- rates and the number of brain donations firmed by many others, justified the cen- remarkable progress in diagnosis, identifi- costs, changed diagnostic priorities, and for research coincide with an emerging tral role of autopsies in medical education cation of new diseases, detection of dis- decreasing clinical interest in the autopsy need for application of modern methods and in the quality control of clinical prac- ease mechanisms, and new treatments. as a quality control of clinical diagnosis of brain studies to determine the types tice. They contributed to the growth of However, the rate of autopsies declined and therapy (Kretzschmar 2009). The de- and distribution of developmental altera- autopsy rates in hospitals and medical toward the end of the past century and the cline in autopsy rates occurred during the tions, the correlations between structural schools to approximately 50% in the current US rate is less than 5%. The major same time that the diagnosis rate for Au- 1940s (Dobbs 2005). This trend resulted in reasons for declining autopsy rates were tism Spectrum Disorders (ASD) increased see New Trends on page 26

Inhibition of Eye Blinking Reveals How Toddlers with ASD Attend Differently to What They Watch

By Sarah Shultz, blinking, with eyelids closed, not seeing “When we blink, we lose visual infor- might see the same effect at a micro-scale: Warren Jones, PhD, and the visual information in front of us. mation,” says Sarah Shultz, a graduate that is, not just for a whole video, but mo- Ami Klin, PhD Researchers at the Marcus Autism Cen- student in the Psychology Department at ment-to-moment, whether the rate of Marcus Autism Center ter at Emory University, together with a Yale University. “Our eyelids close. blinking might go down or up depending graduate student in Psychology at Yale We’re not conscious of the timing of our on whether viewers perceived a scene to University, have discovered a new way to blinks, but they still impact the visual be more or less important,” says Jones. ne of the central goals in au- use this information to actually measure information we take in.” The researchers tested the hypothesis by tism research is to better meet how engaged people are with what they’re Shultz and her colleagues at the Mar- letting 93 two-year-old children watch a the needs and experiences of watching. And they can even use this tech- cus Autism Center, Ami Klin and Warren video. The video showed a simple scene of O individual children on the au- nique to learn from children who, like Jones, work with children with autism, a boy and girl playing together. About half tism spectrum, even and especially chil- those with autism, have difficulties com- studying how these children look at the the children watching had Autism Spec- dren who may not be able to easily com- municating their interests to others. The world and how they learn from the things trum Disorders. The researchers measured municate those experiences. Researchers results are reported in the December 12th they pay attention to. While measuring when children blinked and when they did- hope that doing so will provide an inroad online Early Edition of the Proceedings of what 2-year-olds look at when watching n’t, and the results were surprising. into helping those children and also into the National Academy of Sciences. videos of other children playing, Shultz “Typically-developing 2-year-olds in- understanding the condition as a whole. The new method relies on measuring the made an interesting observation: she no- hibited their blinking at the same moments That goal would initially appear to precise timing of when people blink, and ticed that the children blinked less while in the video. And they were more likely to have very little to do with eye blinking. In when they don’t. The research reveals that the videos were playing than they did inhibit their blinking when watching more fact, most people don’t even notice when people unconsciously inhibit their blinking before or after the videos. emotional moments, and when looking at they blink. But without noticing it, we at precise moments. Why would people “That initial observation opened the

spend nearly 45 minutes of each day blink at some moments but not at others? whole thing. It made us wonder if we see Blinking on page 13

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PAGE 2 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012 Autism Spectrum News 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 Joel Bregman, MD, Executive Director The Bridge Thompson Center for Autism and Neurodevelopmental Disorders Vice-Chairman University of Missouri Barry B. Perlman, MD, Director of Psychiatry Joseph D. Buxbaum, PhD, Director Saint Joseph’s Hospital Seaver and New York Autism Center of Excellence Mount Sinai School of Medicine Secretary

Stephen E. Freeman, Chief Executive Officer Peg Moran, LMSW, Senior Vice President YAI Network F●E●G●S Health and Human Services System

Lynda Geller, PhD, Founder Treasurer Spectrum Services, A Cooperative of Independent Alan Trager, LCSW, Executive Director & CEO Practices and Organizations, New York, NY Westchester Jewish Community Services

Ami Klin, PhD, Director Members of the Board Marcus Autism Center Constance Y. Brown, MPA, Vice President, Corporate Community Relations Harold S. Koplewicz, MD, President Institute for Community Living Child Mind Institute 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) Donald M. Fitch, MS, Executive Director The Center For Career Freedom Judith R. Omidvaran Parent Advocate, New York Mary Hanrahan, LCSW, Government Relations Specialist New York Presbyterian Hospital Theresa Pirraglia, Co-Founder and Board Member The Foundation for Educating Children with Autism Jorge R. Petit, MD, President Quality Healthcare Solutions Group John C. Pomeroy, MD, Founding Director Cody Center for Autism and Developmental Disabilities Theresa Pirraglia, Co-Founder and Board Member Stony Brook University Medical Center The Foundation for Educating Children with Autism

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Autism Spectrum News We Wish to Thank Our Advertisers Thanks Our Honored Sponsors For Their Participation and Support

Andrew A. Feinstein Life’s WORC Gold Sponsor AHA Marcus Autism Center Aspire Center Melmark Westchester County Department Brooklyn Autism Center MHS of Community Mental Health Center for Career Freedom New York Institute of Technology CNNH Newmark Schools CUNY School of Professional Studies RDP Editorial Consulting Silver Sponsor Daniel Jordan Fiddle Foundation Spectrum Services Devereux Stephen A. Ehrens, Esq F●E●G●S Health and Human Services System Dovetail Dental Thomas D. McCandless, CFA Endicott College Thompson Center for Autism Seaver and New York Autism Center of Excellence Fay J. Lindner Center Westchester Jewish at Mount Sinai School of Medicine Fundraising for a Cause Community Services JBFCS Young Child Expo and Conference AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 3 Table of Contents

1 New Trends in Brain and Tissue Banking for Autism Research 23 The Cybility Jobs Program Story

1 Blinking Study Reveals How Toddlers Attend Differently 24 Unable to Find Appropriate Education, a School is Created

4 From the Publisher: Individuals with Autism Matter 25 Acting Makes the Aspergers Go Away

6 Largest Source of Autism Research Data to Date is Created 25 A Possible Cause of Autistic Disorder: Non-Coding mRNA

6 Studies of Early Development Reveal Immune Link to Autism Autism Spectrum News 7 Boys with Regressive Autism Have Larger Brains 2012/2013 Theme and Deadline Calendar

Spring 2012 Issue: 7 Recurrence in Families More Common Than Realized “Transitioning into Adulthood: 8 Strategies Addressing Food Selectivity and Refusal Navigating the Complex Changes Ahead”

10 Future Directions in Medication Treatments for ASD Deadline: March 5, 2012

11 Excessive Folic Acid Supplementation: A Cause for ASD? Summer 2012 Issue:

12 Assessment and Understanding of Fear in Children with ASD “Vital Supports and Services in the Community” Deadline: June 5, 2012 14 Autism and Asperger’s: Two Distinct Disorders or One? Fall 2012 Issue: 16 Training Peers Improves Social Outcomes for Some “The Importance of Early Intervention Following Diagnosis” 18 Science and Evidence Won Out Against Auditory Integration Deadline: September 5, 2012

19 Planning For Your Child With Special Needs Winter 2013 Issue:

“Exploring Educational Challenges and Opportunities” 20 Learning Style Preferences of Students with Autism Deadline: December 5, 2012

20 Supporting Academic Success with Assistive Technology To Submit an Article or Advertisement 21 The Lighter Side of the Spectrum - A Mom’s View: Our Story Call Us Today: (508) 877-0970 Or Email Us: [email protected] 22 Robin’s Voice - A Resilient Mom’s Commentary on Autism

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— From the Publisher — Science Matters Because Individuals with Autism Matter

By David H. Minot, BA parison, in 2010 there were no reported edge will translate into advances such as Publisher cases or deaths of smallpox or diphtheria the development of new novel treatments Autism Spectrum News (CDC MMWR December 16, 2011 / 60 and the ability for even earlier detection (49);1681-1694). Thanks to knowledge and diagnosis. The future of autism sci- gained through scientific research, vac- ence is looking very promising. he theme of this issue of Autism cines were developed to eradicate these Today, science matters more than ever Spectrum News is, “Science terrible diseases, improving our overall as autism continues to raise more ques- Matters: The Latest Advances quality of life. tions than we currently have answers for. in Autism Research.” We are As we enter the year 2012, autism has We must continue to increase funding and Ttruly inspired by the quality of articles become widely prevalent in the United further publicize the vital work our re- and leaders in the field of autism who States and is having an impact on society search scientists are doing for the autism have collaborated with us to bring you in many ways. The current US population community. The people who truly benefit this exciting issue. Our goal is to bring is near 312,800,000, with one birth every from science are the young and adult indi- you the highest quality of science-based 8 seconds (US Census Bureau). The latest viduals living with autism spectrum disor- information and education in each issue prevalence data from the CDC is that au- ders. Ultimately, what matters most is of Autism Spectrum News. tism occurs in 1 out of every 110 children. providing individuals with autism with the Why is autism science so important? The lifetime incremental societal cost of best quality of life as productive members Through scientific research, we gain an autism per person is $3.2 million (Arch of the community. Science matters, be- increased knowledge and understanding of Pediatr Adolesc Med. 2007;161(4):343- cause individuals with autism matter. autism; who it affects, what causes it, 349). This data shows that autism is ex- I urge you to share the articles in this when it begins, and how it can best be tremely costly and the prevalence is in- issue of Autism Spectrum News with your treated. Thanks to discoveries made creasing dramatically. What these num- professional colleagues and personal through scientific research, we now know bers do not show is the human effect au- friends. You can view the entire issue that early intervention utilizing proven David H. Minot, BA tism has on the lives of children and and all previous issues on our website for evidence-based treatment methods will adults with autism spectrum disorders and free at www.mhnews-autism.org. In ad- greatly increase a child’s overall develop- At the beginning of the 20th century, the family members who are struggling to dition, please become part of our growing ment. This is just one example of how re- infectious diseases were widely prevalent care and provide for them. online autism community on Facebook search translates into knowledge used to in the United States and took an enor- Similarly to how scientific research (www.facebook.com/AutismSpectrumNews) improve the lives of individuals with au- mous toll on the population. For example, led to the eradication of many infectious and on Twitter (@AutismSpecNews). tism and their families. As Kofi Annan, in 1900, 21,064 smallpox cases were re- diseases in the early 1900s, science today As always, I look forward to reading former Secretary General of the UN once ported and 894 patients died. In 1920, is having an impact on autism. For exam- your articles and hearing your comments, said, “Knowledge is power. Information is 147,991 diphtheria cases were reported ple, through research, we are beginning to suggestions, and ideas. Please feel free to liberating. Education is the premise of pro- and 13,170 patients died (CDC MMWR understand human genetics and neurology call me at (508) 877-0970 or write to me gress, in every society, in every family.” April 02, 1999 / 48(12);243-248). By com- like never before. This increased knowl- at [email protected].

Spectrum Services 303 Fifth Avenue, Suite 1003 New York, NY 10016 212-686-3535 212-686-3536 (fax) www.spectrumservicesnyc.com

We are expanding and adding new clinicians and services!

• Spectrum Services is a cooperative of independent practices and organizations. We have located together for the benefit and convenience of our clients.

• All of our participants specialize in evaluation, support and treatment of children, teens, or adults with Asperger Syndrome and related conditions.

• Our services include specialized psychotherapy, social skills and pragmatic language groups, psychiatric services, speech and language, college coaching, executive function services, couples counseling, vocational assessment and support, social skills seminar, neuropsychological evaluation, individual and family support, courses on college and transition coaching, educational placement consulting, and a seminar series on autism spectrum issues.

Lynda Geller, PhD Founder of Spectrum Services and Psychologist, [email protected]

Mary Riggs Cohen, PhD - Psychologist, [email protected] David A. Cooperman, MD - Psychiatrist, [email protected] Dale Delarocca, BA - College Coaching, [email protected] Valerie Gaus, PhD - Psychologist, [email protected] Enid Gort, PhD - College Coaching, [email protected] Rhea L. Hooper, MA, CCC-SLP - Speech and Language Pathologist, [email protected] Mitchell Nagler, MA, LMHC - Mental Health Counselor, [email protected] Stephen Migden, PhD, ABPP - Independent Educational Consultant, [email protected] Aliza Rabin, MD - Psychiatrist, [email protected] Michele Robins, PhD - Neuropsychologist, [email protected] Shuli Sandler, PsyD - Psychologist, [email protected] Leslie Sickels, MSW - Social Worker, [email protected] Ilene Solomon, PhD - Neuropsychologist, [email protected] Renee Soufer, MA, EdM - Psychologist in training, [email protected] Beth Yurman, PsyD - Psychologist, [email protected] Jaime Black, PsyD - Post-doc, [email protected]

Asperger Center for Education and Training is a virtual center that disseminates information about AS and has nonclinical services available such as coaching, coaching supervision, educational consultation, and series of workshops and courses. www.aspergercenter.com

Asperger Syndrome Training & Employment Partnership (ASTEP) has the mission of creating and supporting programs that promote employment for adults with AS in the corporate sector and training employers about their special talents and needs. Marcia Scheiner, CEO, Michael John Carley, Executive Director, and Susan Lesco, Director of Program Partnerships, will be working to raise awareness about the benefits of hiring adults with Asperger Syndrome and the challenges they face in the world of employment. www.asperger-employment.org

Asperger Syndrome and High Functioning Autism Association (AHA) provides support programs, conferences, activities, a hotline and reliable, up-to- date information for individuals and families. www.ahany.org

Career and Employment Options, Inc., CEO is an award winning service providing transition supports for students in special education and job placement services for students and adults with Asperger Syndrome and other disabilities. www.ceoincworks.com AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 5 PAGE 6 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012

AUTISM SPECTRUM NEWS DESK

NDAR Federation Creates Largest Source of Autism Research Data to Date NIH-Funded Database Sets Standard for Collaboration and Data Sharing

By The National Institute Approved NDAR users will have ac- of Mental Health (NIMH) cess to data from the 25,000 research par- ticipants represented in NDAR, as well as 2,500 AGRE families and more than data partnership between 7,500 participants who reported their own the National Database for Au- information to IAN. tism Research (NDAR) NDAR is supported by NIMH, the A (ndar.nih.gov), and the Autism Eunice Kennedy Shriver National Insti- Genetic Resource Exchange (AGRE) tute of Child Health and Human Develop- (agre.autismspeaks.org) positions NDAR ment, the National Institute of Neurologi- as possibly the largest repository to date cal Disorders and Stroke, the National of genetic, phenotypic, clinical, and medi- Institute of Environmental Health Sci- cal imaging data related to research ences, and the NIH Center for Information on autism spectrum disorders (ASD). Technology. “The collaboration between AGRE and NDAR exemplifies the efforts of govern- The mission of the NIMH is to trans- ment and stakeholders to work together form the understanding and treatment of for a common cause,” said Thomas R. mental illnesses through basic and clini- Insel, MD, director of the National Insti- cal research, paving the way for preven- tute of Mental Health, part of NIH. tion, recovery and cure. For more infor- “NDAR continues to be a leader in the mation, visit www.nimh.nih.gov. effort to standardize and share ASD data About the National Institutes of Health with the research community, and serves NDAR integrates and standardizes data, Databases previously federated with (NIH): NIH, the nation's medical research as a model to all research communities.” tools, and computational techniques NDAR include Autism Speaks’ Autism agency, includes 27 Institutes and Centers NDAR is supported by the National across multiple public and private au- Tissue Program (www.brainbank.org), the and is a component of the U.S. Depart- Institutes of Health; AGRE is an Autism tism databases. Through NDAR, re- Kennedy Krieger Institute’s Interactive Au- ment of Health and Human Services. NIH Speaks program. searchers can access results from these tism Network (IAN) (www.ianproject.org), is the primary federal agency conducting NDAR’s mission is to facilitate data different sources at the same time, using and the NIH Pediatric MRI Data Repository and supporting basic, clinical, and trans- sharing and scientific collaboration on a the rich data set to conduct independent (www.nih-pediatricmri.org). AGRE currently lational medical research, and is investi- broad scale, providing a shared common analyses, supplement their own research houses a clinical dataset with detailed medi- gating the causes, treatments, and cures platform for autism researchers to accel- data, or evaluate the data supporting cal, developmental, morphological, demo- for both common and rare diseases. For erate scientific discovery. Built around published journal articles, among many graphic, and behavioral information from more information about NIH and its pro- the concept of federated repositories, other uses. people with ASD and their families. grams, visit www.nimh.nih.gov.

Studies of Early Development Reveal Immune Link to Autism

By Virginia Hughes ment but was not involved in any of the of internal medicine at the MIND Institute The study is based on 520 women, in- new studies. of the University of California, Davis. cluding 204 who have children with au- Many investigations of older children Sometimes, though, these antibodies can tism, who are part of a project he molecular soldiers of the im- and adults with autism have uncovered turn against the fetus, mistaking its proteins called Childhood Autism Risk from Ge- mune system affect brain devel- signs of the immune system gone awry. for foreign invaders. This happens, for ex- netics and Environment, or CHARGE opment and may contribute to The new studies are finding similar signa- ample, in pregnant women with the autoim- (http://beincharge.ucdavis.edu/). Launched many cases of autism. That’s the tures in early brain development, from the mune disease lupus, whose babies are in 2003, the project aims to collect ge- Temerging hypothesis from five new stud- womb through the first few years of life. netic and environmental information — sometimes born with heart abnormalities. ies that use different methods — ranging Still, no one knows much about the Van de Water’s work suggests that such as diet and chemical exposures in from screening blood samples of pregnant biological mechanisms that determine these so-called autoantibodies may their homes — from 2,000 children with women to mathematical analyses of gene when, how or why immune molecules also contribute to autism. autism or developmental delay, and expression in the brain — published in the affect the fetal brain — let alone whether In fact, she says, when pregnant women typical controls, ranging in age from 2 past few months. or why they might contribute to autism. carry specific combinations of these anti- to 5 years. One report shows, for example, that “Obviously the immune changes are there bodies, their chance of having a child with Van de Water’s team also found that pregnant women whose babies later de- and are prominent. We just have to figure autism is close to 100 percent. “It’s defi- the particular combination of antibodies velop autism tend to carry rare antibodies in out what they’re doing,” Patterson says. nitely a unique set of autoantibodies in carried by the mother relates to her child’s their blood. Another finds that they harbor these moms,” she says. “We don’t find behaviors. The researchers assessed the an excess of certain signaling molecules of Maternal Influence these antibodies in control moms.” A Sac- children using a variety of autism tests, the immune system, called cytokines, in the ramento-based biotech called Pediatric including the gold standard diagnostic amniotic fluid. A third study found that Developing babies can defend against Bioscience is developing a commercial test tests: the Autism Diagnostic Observation some autism risk genes expressed in the infection thanks to immune molecules for these markers that should be available Schedule and the Autism Diagnostic In- developing brain belong to networks of gleaned from their mothers. Maternal an- within 18 months, she says. terview-Revised. They found that certain genes related to cytokine signaling. tibodies called immunoglobulin G, or On 20 October, Van de Water reported antibodies in the mothers’ blood are asso- “These studies further build the case IgG — produced after an individual is in the Journal of Autism and Developmental ciated with low scores for expressive lan- for the relevance of the immune system in exposed to certain bacteria or viruses — Disorders that about 13 percent of mothers guage, whereas others correlate with in- autism using totally different approaches,” pass through the placenta to the fetus, of children with autism tend to carry one of creased irritability. says Paul Patterson, professor of biology protecting it against those pathogens. two types of IgG antibodies that bind to It’s unclear why some women produce at the California Institute of Technology. “It’s a very important part of fetal fetal brain proteins in their blood. None of these antibodies and others don’t, but Van Patterson has made animal models of the health to have IgG circulating through the the mothers of typically developing chil- immune system’s role in brain develop- fetus,” says Judy Van de Water, professor dren carry either of these IgG subtypes1. see Immune Link on page 34 AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 7

AUTISM SPECTRUM NEWS DESK

Boys with Regressive Autism Have Larger Brains Than Age-Matched Health Counterparts

By Christine Wu Nordahl, PhD, and The current study is one of the first David G. Amaral, PhD published from data collected by the UC UC Davis MIND Institute Davis MIND Institute Autism Phenome Project (APP). The project’s goal is to re- cruit and enroll as many very young chil- n the largest study of brain develop- dren as possible in order to collect suffi- ment in preschoolers with autism to cient biological and behavioral information date, a study by UC Davis MIND to characterize different autism subgroups Institute researchers has found that 3 and to explore different neural, immu- -year-oldI boys with regressive autism, but nologic, and genetic signatures of autism. not early onset autism, have larger brains For the study, the authors enrolled a than their healthy counterparts. total of 180 children between age 2 and 4. The study is published online today in One hundred and fourteen of the partici- the Proceedings of the National Academy pants had autism spectrum disorder; the of Sciences Early Edition. It was led by remaining participants were 66 age- Christine Wu Nordahl, a researcher at the matched typically developing controls. Of UC Davis MIND Institute and an assistant the children with autism, 54 percent were professor in the Department of Psychiatry diagnosed with the regressive form and 46 and Behavioral Sciences and David G. with the non-regressive type. Amaral, Beneto Foundation Chair, MIND The researchers collected magnetic Institute Research Director and University resonance imaging (MRI) scans on 180 of California Distinguished Professor in Photo Credit: UC Regents participants at age 3. To evaluate the rate the Department of Psychiatry and Behav- David G. Amaral, PhD with Christine Wu Nordahl, PhD of brain growth prior to age 3, they ana- ioral Sciences. lyzed head circumference measurements “The finding that boys with regressive Brain enlargement has been observed Autism is a neurodevelopmental disor- taken from pediatric well-baby visits autism show a different form of neuropa- in previous studies of autism. However, der whose symptoms include deficits in from birth through 18 months. Roughly thology than boys with early onset au- prior to this study, little was known about language and social interaction and com- half of the children with autism were re- tism is novel,” Nordahl said. “Moreover, how many and which children with au- munication. The condition affects 1 in 110 ported by their parents as having experi- when we evaluated girls with autism tism have abnormally large brains. children born today, according to the U.S. enced a regression, characterized by the separately from boys, we found that no “This adds to the growing evidence Centers for Disease Control and Preven- loss of previously acquired language and girls - regardless of whether they had that there are multiple biological subtypes tion. It is diagnosed more frequently in social skills. early onset or regressive autism - had of autism, with different neurobiological male children than female children - at a abnormal brain growth.” underpinnings,” Amaral said. ratio of 4 to 1. see Regressive on page 31

Autism Recurs in Families More Often than Previously Realized

By Autism Speaks severity of the older sibling’s autism milestones, especially those related to did not affect the risk to younger broth- autism, and if needed begin intervention ers or sisters, nor did other family at- without delay.” Equally important, she esearch funded by Autism tributes such as parental age, ethnicity, adds, is the need to fund further re- Speaks provides vital infor- or birth order. search on how early intervention can be mation on the need to screen In all, the researchers assessed 664 best used with infants and toddlers and baby siblings of children on infants, all of whom had at least one whether it might be possible to develop Rthe spectrum. Parents of children with older sibling with a verified diagnosis preventive measures to help children autism are understandably concerned of an autism spectrum disorder (ASD). not yet showing full symptoms. about the likelihood that subsequent They enrolled infants very early (two- Autism Speaks made the study possi- children will be affected. New research, thirds of them before 6 months) before ble by organizing the High-Risk Baby made possible by Autism Speaks, shows symptoms of autism become obvious. Siblings Research Consortium, an inter- that the chances are considerably higher The clinicians then followed the babies national network that pools and coordi- than previous estimates. through 36 months of age. They used nates studies of affected families in 21 “These findings emphasize the im- gold standard diagnostic methods and sites in the US, Canada, Israel and the portance of screening high-risk younger comprehensive assessments performed UK. Alycia Halladay, PhD, Autism siblings,” explains Autism Speaks Chief by expert clinicians. Speaks director of research for environ- Science Officer Geraldine Dawson, “Previous studies were done in the mental sciences, and Andy Shih, PhD, PhD, “because we know that early diag- 80’s and 90’s when different and more vice president of scientific affairs, or- nosis and early intervention help chil- narrow diagnostic criteria were used,” ganized the consortium in 2003, in part- dren on the spectrum achieve their Dr. Ozonoff says of the dramatic find- nership with the Eunice Kennedy greatest potential.” ings. “Previous studies also used differ- Shriver National Institutes for Child The study, the largest ever of its kind, ent methods and some did not directly Health and Development. Autism was published in August by the re- Geraldine Dawson, PhD assess children.” Speaks funded the participation of lead spected journal Pediatrics. It found that “The implications of the study are authors Sally Ozonoff, PhD., and Greg- in families with one or more children on was much higher among younger broth- clear,” Dr. Dawson adds. “Baby siblings ory Young PhD, both of the University the autism spectrum, the chances that a ers (1 in 4) than among younger sisters of a child with ASD need to be tracked of California-Davis MIND Institute and baby sibling will develop autism are (1 in 9). In families with more than one carefully. Pediatricians and other medi- also funded the study’s analysis of col- around 1 in 5, more than double previous older child on the spectrum, 1 in 3 in- cal professionals should work actively laborative results. The National Insti- estimates of 1 in 10 to 1 in 30. The rate fants eventually developed autism. The with parents to monitor developmental tutes of Health provided overall funding. PAGE 8 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012 An Overview of Strategies to Address Food Selectivity and Refusal in Individuals with Autism

By Christopher Perrin, PhD, BCBA-D, specialized and must be consistently im- Amanda Guld, PhD, BCBA-D, and plemented. Furthermore, intervention may Mary Jane Weiss, PhD, BCBA-D initially increase problem behavior, in- Melmark creasing caregiver worry. Clinicians faced with these issues must possess an impressive set of skills in order eeding difficulties are common to successfully treat feeding problems. in typically developing children Professionals who lack specialized train- (2-35%), and are even more ing may not have the skill set to meet common in children with devel- these needs, depending on the nature of opmentalF problems (33-80%; Babbitt, the problem. It is imperative that clinicians Hoch, & Coe, 1994; Burklow, Phelps, et evaluate their ability to intervene effec- al, 1998). Feeding difficulties in individu- tively and obtain needed expertise when als with autism is one of the most chal- the behavior exceeds their skill level. lenging presenting problems faced by Furthermore, these problems are often clinicians. These problems come in sev- multifaceted, and may require the expertise eral forms, including food refusal and of medical doctors, speech and language extreme food selectivity. Specific issues pathologists, and behavior analysts. It is may include inadequate intake of food, often the case that feeding issues interact inadequate range of foods consumed, re- The effects on caregivers are also sig- teaching the child that refusal will result in with medical issues, most notably reflux and fusal to consume food, and challenging nificant and family members often express food removal. Also, they may cajole, beg, motility issues (see Williams et al., 2010 for behaviors. Often, individuals with these extremely high stress surrounding eating or otherwise encourage the individual in a a review of the etiology of feeding prob- issues have had them for many years, and mealtimes (Singer, Song, Hill, & Jaffe, way that provides undue attention for food lems). The resulting persistent problems may have been treated unsuccessfully with a 1990). Parents and other caregivers often refusal. In many cases, just to get their require both medical and behavioral inter- variety of strategies, and have developed are extremely concerned, and may be child to eat something, parents will provide ventions, and treatment should be designed health consequences as a result of the genuinely worried about the health impact access to preferred foods once attempts to in combination with a simultaneous medical longevity and severity of the problem. of the food refusal issues. In addition, they get their child to eat a non-preferred food assessment and/or a medical treatment plan. Efforts to intervene may be met with esca- may themselves feel defeated from years fail. Multiple researchers have confirmed In this article, we will briefly review lations of challenging behaviors, and with of unsuccessful efforts to address the prob- that escape and attention are the two most some of the specialized strategies that increased refusal to eat. Documented lem. Parental anxiety may also have led to common parental reactions that may main- have been shown to improve feeding. The health consequences of food selectivity in some interactional patterns around eating tain such behaviors (Piazza et al., 2003; strategies are behavior analytic, and have autism include rickets, vitamin deficien- that are also part of the current problem. Borrero et al., 2010; Casey et al., 2009). been empirically shown to reduce refusal, cies, bone loss, and stunted growth For example, parents may often remove Caregiver training is therefore an essential (Williams, 2010). the item that is being refused, inadvertently aspect of treatment, as the protocols are see Food on page 28 AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 9 PAGE 10 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012 Future Directions in Medication Treatments for ASD

By Evdokia Anagnostou, MD, Joel D. Bregman, MD, and Latha V. Soorya, PhD, BCBA

here has been enormous growth over the past 10-15 years in re- search attempting to identify effective medications for chil- Tdren and youth with ASD. A few classes of medications have been shown to be effective for treating specific symptoms associated with autism. There is accumu- lating data to support the use of stimulants and non-stimulants for hyperactivity and attention deficits, and of atypical antipsy- chotics (risperidone, aripiprazole) for irri- tability and impulsive aggression. There is disappointing data regarding the use of SSRIs (citalopram, fluoxetine) for repeti- tive behaviours but several issues related to possible subgrouping may not have been addressed adequately. However, the work done to date is based on the premise that if a symptom domain is shared by Evdokia Anagnostou, MD Joel D. Bregman, MD Latha V. Soorya, PhD, BCBA multiple neurodevelopmental disorders, then its biology must be common across communication development or in key As our understanding of the molecular potentially facilitate learning. There are such disorders. As such we “borrowed” learning and cognitive domains essential genetics and basic neurosciences of ASD currently several brain pathways and neu- medications from other such disorders for skill development. Previous studies grows, the field is considering new treat- rochemical mediators identified as poten- (e.g. ADHD, OCD) and tested them in have focused primarily on behavioural ment approaches. We are for the first time tially important targets for treatment in autism. Although the results have been symptoms shared by other disorders, in a position to identify novel molecular ASD. In this article, we focus on the gluta- sometimes fruitful, the predictability and rather than on weaknesses in cognitive targets based on molecular genetics, neuro- mate signalling system, oxytocin and im- degree of clinical benefit has been lower and motor domains of functioning (e.g., pathology and animal model work. This mune function, although other models aris- among those with autism. In addition, this fine and gross motor impairments, poor cutting edge research facilitates the transla- ing from single gene disorders such as approach has not adequately addressed motor coordination, memory weaknesses, tion of basic science findings into treat- either impairments in core social and sensory issues). ments that target core ASD symptoms and see Future Directions on page 29 AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 11

Excessive Folic Acid Supplementation: A Cause for Autism Spectrum Disorders?

By Mohammed Junaid, PhD pregnant or is planning to achieve preg- New York State Institute for Basic nancy, and hence can be considered an Research in Developmental Disabilities environmental factor. There are manda- tory recommendations for FA supplemen- tation of foods to prevent the occurrence utism spectrum disorders of neural tube defects (NTDs) in new- (ASDs) are a group of pheno- borns. In addition, the guidelines recom- typically heterogeneous neuro- mend that all women planning or capable A developmental disabilities char- of pregnancy take a daily supplement con- acterized by impairments in three core taining 0.4 to 0.8 mg (400 to 800 µg) of functional domains: reciprocal social in- folic acid per day, which is increased to 4 teractions, verbal communication and mg/day for women with a history of a stereotyped, repetitive patterns of behav- prior child with NTDs. Because neural iors. The ASDs are phenotypically hetero- tube closure in human fetuses occurs geneous, in that affected individuals have within the first trimester, the question is varying degrees of deficits. Recent preva- raised of the rationale for FA supplemen- lence data indicate a marked increase in tation for the entire duration of the preg- ASDs throughout the United States and nancy. A primary function of FA is to act the world, the causative factors of which as a co-factor in enzymes that synthesize remain largely unknown. ASDs are com- nucleic acid and facilitate transfer of 1- plex disorders, with the probable involve- carbon methyl groups to DNA and pro- ment of both dysregulation of multiple teins. Methyl groups added on cytosine genes and environmental factors. Al- residues in promoter regions’ CpG dinu- though ASD are labeled as highly herita- cleotides in the genomic DNA are respon- ble, extensive genome-wide analyses of sible for the regulation of gene expres- linkages, copy-number variations, and sion. The IBR research team led by Mo- single nucleotide polymorphism ap- Mohammed Junaid, PhD at his High Performance Liquid Chromatography hammed Junaid, PhD, head of the Struc- proaches have identified genetic causative (HPLC) system analyzing metabolites in response to Folic Acid treatment tural Neurobiology Laboratory, hypothe- factors in only less than 10% of the total sizes that excessive FA supplementation cases. Therefore, there is a need for ity to modify gene expression. The New the primary DNA sequence but instead during pregnancy will lead to altered gene greater emphasis on studies of environ- York State Institute for Basic Research in cause dysregulation of gene expression expression during the crucial development mental factors that contribute to the etiol- Developmental Disabilities (IBR), located due to covalent modification of the build- of the fetus and may be responsible for ogy of ASDs. The primary targets for in Staten Island, NY, is studying such ing blocks of the DNA are termed epige- the behavioral changes evident in the such studies would be factors to which factors that contribute to modification of netic factors. ASDs. Epigenetics plays a crucial role in pregnant women and their developing the genome, affecting normal gene ex- Folic acid (FA) is an essential vitamin fetuses are exposed and that have the abil- pression. These factors that do not change that is prescribed to every woman who is see Folic Acid on page 32

Research Studies for People with Autism Spectrum Disorders

Do you or your child have: * Repetitive behaviors or narrow interests? * Difficulty communicating? * Trouble making friends or maintaining relationships? * Poor organizational skills?

If yes, you or your child may qualify for one of the following studies:

Arbaclofen Clinical Trial (ages 5-21) Examines whether arbaclofen improves social withdrawal symptoms associated with autism. For more information please call (212) 241-2826

Memantine Clinical Trial (6-12) Targets motor skills deficits associated with autism. For more information please call (212) 241-3692

Social Skills Groups with Imaging (ages 8-11) Includes weekly groups for children with strong verbal skills. Goals include improving relationships with peers and learning coping skills for social situations. Participation involves an MRI before the group starts and after 12 weeks. Parents will meet at the same time. For more information please call (212) 241-2993

Adult Imaging Studies (ages 18-45) Adults who qualify will have an fMRI scan and the option to participate in an oxytocin challenge study to see whether oxytocin improves ability to read emotions in other people. For more information please call 212-241-2826 PAGE 12 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012 Assessment and Understanding of Fear in Children with an ASD

By Laura B. Turner, MS and emotion identification and labeling, along Raymond G. Romanczyk, PhD, BCBA-D with atypical reactions to the environ- Institute for Child Development ment, limit the ability of even those that SUNY Binghamton are closest to the child to accurately inter- pret the child’s behavior as fear-related. Children with an ASD often are not able ntense fears and phobias have been to effectively identify or communicate reported in up to 64% of children their emotions or even dislike of an object with an ASD (Muris Steerneman, or situation to their caregivers. Because of Merckelbach, Holdrinet, & Meesters, many of these challenges, there are cur- 1998).I In comparison, only 5% of typically rently no comprehensive, accurate, or developing children present with intense standardized methods to assess fear in fears (Ollendick, King, & Muris, 2002). children with an ASD. Children with an ASD also have an atypi- cal presentation and express greater Comprehensive Assessment of Fear amounts of fear as compared to children with other developmental or intellectual Recent research at the Institute for disabilities (Evans, Canavera, Kleinpeter, Child Development utilized a comprehen- Maccubbin & Taga, 2005; Rodgers, Riby, sive assessment method involving both Janes, Connolly & McConachie, 2011). caregiver report of children’s fear and For example, children with an ASD ex- direct observation of children’s fear re- press more fear of medical procedures and sponses. The purpose was in part to deter- less fear of dangerous and harmful objects mine the correspondence between care- or situations than children without an ASD. giver report of children’s fear and direct It is interesting that given this lowered fear observation of children’s fear responses of dangerous and harmful objects or situa- and to assess the utility of a comprehen- tions, research at the Institute for Child sive technique. Development has indicated a threefold Laura B. Turner, MS with Raymond G. Romanczyk, PhD, BCBA-D To directly assess children’s fear reac- increase in unintentional injuries for chil- tions, children viewed photographs of dren with an ASD compared to typically Much of the current understanding of dren with an ASD, caregiver report has common natural stimuli (e.g., animals, developing children (Calavari and Ro- fear in children with an ASD has been been the primary tool. However, interpret- car, boat, insects, medical procedures) on manczyk, 2011). Although deficits in emo- through caregiver report, which is also ing emotional states in children with an a 42-inch high definition monitor. Care- tion perception, expression, and regulation common practice in the assessment of fear ASD is a challenge for caregivers as well givers completed a questionnaire that as- in children with an ASD are well recog- in typically developing children, along as service providers and researchers. sessed their knowledge of their child’s nized, the understanding of specific emo- with self-report. Given that self-report can Common deficits in ASD such as poor tional states, such as fear, is in its infancy. pose significant limitations for most chil- communication skills and difficulty with see Fear on page 33

Do you need support for a child, teen or adult on the autism spectrum?

Asperger Syndrome and High Functioning Autism Association can help!

Contact us at: www.ahany.org [email protected] 888.918.9198

• Monthly support meetings, hotline and information lectures • Biannual conferences for professionals, family members and individuals on the autism spectrum • Email listserv and member newsletter • Referral to professionals • Transition and post-secondary program information • Social and family events for all ages

AHA Association, a Not-for-Profit Corporation AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 13

Sarah Shultz Warren Jones, PhD

Blinking from page 1 is or is not engaging. This means that we can measure not only what a person is look- the faces of onscreen characters,” said ing at, but also how important and engaging Shultz. Toddlers with autism, however, that thing is to a person,” says Shultz. were more likely to inhibit their blinking This method is now being applied to when looking at physical objects, and at investigate the experiences of other chil- physical objects in motion. dren with ASD. When children with The results show for the first time that ASD look at different kinds of visual eye-blinks are inhibited at precise moments information, or at faces and eyes and so as to minimize the loss of visual informa- information that might be useful when tion that occurs as the eyelids close during a trying to understand other people’s ac- blink. Importantly, exactly when that inhibi- tions, are children with ASD actually tion occurs depends on how important the engaged with those stimuli to the same visual information is to a viewer. The more extent as their typical peers? Do children important the visual information is to a with ASD perceive those stimuli and viewer, the more likely he or she will be to their adaptive value in the same way? inhibit blinking. While the children in each Because engagement with socially rele- group blinked at about the same overall rate, vant stimuli may be critical for other and blinked less during the video than be- aspects of neural and behavioral devel- fore or after, the timing of blink inhibition opment - such as the acquisition of varied between groups: typically-developing speech and language skills, and the spe- toddlers stopped blinking to watch emo- cialization of brain function - this is a tional facial expressions and actions, while critical question. And the timing of when toddlers with ASD stopped blinking when children blink may hold new answers. watching objects move. Each group of tod- The eyes are a window to the soul, but dlers inhibited their blinking, but did so dur- now it seems that the way that window ing moments that they perceived to be par- opens and closes offers a deeper look inside. ticularly important to process (and they actu- ally increased their blinking during mo- References ments perceived to be less important). Toddlers with autism also inhibited Shultz, Klin, & Jones. (In Press). Inhibition their blinking after actions happened, of eye blinking reveals subjective percep- whereas typically-developing toddlers in- tions of stimulus salience. Proceedings of hibited their blinking early. This suggests the National Academy of Sciences. that typically-developing toddlers were anticipating the unfolding of the social The study was funded by the National interactions they watched, while toddlers Institute of Mental Health and the Simons with ASD were reacting, after the fact, to Foundation. physical actions that had already happened. Sarah Shultz is a graduate student in “While we knew about young children the Department of Psychology at Yale with autism paying less attention to social University. Ami Klin, PhD, is the Director cues and information, this is a new insight of the Marcus Autism Center, Children’s into understanding what kids engage with Healthcare of Atlanta, and Chief of the and what they perceive to be most impor- Division of Autism & Related Disorders at tant,” said Jones. “Even if they’re looking the Department of Pediatrics at Emory at the same thing, different children may University School of Medicine. Warren perceive it differently. For a two-year-old Jones, PhD, is the Director of Research at with language delays, or even an 8 or 10 the Marcus Autism Center and Assistant year-old who struggles to communicate, Professor in the Department of Pediatrics this kind of measure can tell us about that at Emory University School of Medicine. child’s experience and, with that informa- The Marcus Autism Center, in Atlanta, tion, hopefully improve our efforts to Georgia, is the largest center for clinical help that child learn.” care of children & adolescents with Au- In addition to allowing unique insights tism Spectrum Disorders in the country, into how children with Autism Spectrum providing comprehensive diagnostic and Disorders engage with and experience the needs-based evaluations, and a wide ar- visual world, Shultz says that the finding is ray of treatments programs spanning of broad relevance to understanding percep- severe behavior, language and communi- tion in general. “It’s remarkable that eye- cation, school-based and in-home pro- blinks, a seemingly simple physiological grams, and feeding disorders. From function, should be inherently linked to 1991, Marcus has served more than something as complex as the subjective as- 40,000 individuals and their families. For sessment of what content in the visual world more information, visit www.marcus.org. PAGE 14 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012

Autism and Asperger’s: Two Distinct Disorders or One Disorder of Varying Symptom Severity

By Sam Goldstein, PhD, and language without efforts to compensate Jack A. Naglieri, PhD through gesture; marked impairments in the ability to initiate or sustain conversa- tion despite adequate speech; repetitive or utism has been conceptual- stereotyped use of language or idiosyn- ized as a biologically deter- cratic language; lack of varied, spontane- mined set of behaviors occur- ous, make believe play or social imitative A ring with varying presentation play appropriate for the child’s develop- and severity that is likely as the result of mental level. The third set of criteria in- varying cause (for review, see Goldstein, volves repetitive and stereotypic patterns Naglieri, & Ozonoff, 2008). The disorder of behavior, restricted interests or activi- occurs significantly more often in boys ties including preoccupation in certain (Smalley, Asernow, & Spence, 1988) patterns of behavior that would be con- and is found across all social classes sidered abnormal in intensity or focus; (Gillberg & Schaumann, 1982). Recent compulsive adherence to specific non- surveys have suggested the incidence of functional routines or rituals, repetitive autism in the general population may be motor mannerisms (self-stimulatory be- as high as 1 per 113 (Center for Disease havior), or persistent preoccupation with Control, 2007). Autism is a disorder in parts of objects. The second two sets of which individuals can present problems criteria include delay prior to the age of ranging from those that cause almost three in social interaction, language as total impairment to others that allow the used for social communication or sym- individual to function but not optimally. bolic, imaginative play. Children on the Autism Spectrum or Sam Goldstein, PhD Jack A. Naglieri, PhD Though considered a distinct disorder continuum experience a wide range of in the DSM-IV-TR, Asperger’s provides developmental difficulties involving ered two distinct conditions. The criteria body posture and gestures of social inter- criteria identical to the Autism diagnosis communication, socialization, thinking, for Autistic Disorder include three sets of action; failure to develop peer relation- for qualitative impairment in social inter- cognitive skills, interests, activities and behavioral descriptions to qualify for the ships appropriate to developmental level; action and restrictive, repetitive and motor skills (Goldstein, Naglieri, & diagnosis. A child must show evidence of markedly impaired sharing of emotional stereotypic patterns of behavior. There is, Ozonoff, 2008). symptoms from at least two of the first states or interests with others; expression however, no requirement for a qualitative The Diagnostic and Statistical Manual set of criteria and one from each of the of pleasure in other people’s happiness impairment in communication. Specifi- IV – Text Revision (DSM-IV-TR) of the second and third sets of criteria. The first and a lack of social or emotional recip- cally, this diagnosis requires an absence American Psychiatric Association (APA, set of criteria features qualitative impair- rocity. The second set of criteria must of clinically significant delay in language, 2000) criteria include a group of Perva- ment and social interaction manifested by reflect a qualitative impairment in com- acquiring single words by two years of sive Developmental Disorders under problems related to non-verbal behaviors munication as manifested by a delay or which Autism and Asperger’s are consid- including eye contact, facial expression, total lack of the development of spoken see Autism and Asperger’s on page 27 AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 15 PAGE 16 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012

Training Peers Improves Social Outcomes for Some Kids with ASD

By The National Institute These children were randomly assigned all children with ASD who had received of Mental Health (NIMH) to either receive one-on-one training with neither intervention were re-randomized to an intervention provider or to receive no one of the other treatment categories. one-on-one intervention. The children Children with ASD whose peers re- hildren with autism spectrum were also randomized to receive a peer- ceived training - including those who may disorders (ASD) who attend mediated intervention or no peer-mediated also have received the child-focused inter- regular education classes may be intervention. The two-step randomization vention - spent less time alone on play- C more likely to improve their resulted in four intervention categories, grounds and had more classmates naming social skills if their typically developing each with 15 children who had ASD: them as a friend, compared to participants peers are taught how to interact with them who received the child-focused interven- than if only the children with ASD are • Child-focused: direct, one-on-one train- tions. Teachers also reported that students taught such skills. According to a study ing between the child with ASD and with ASD in the peer-mediated groups funded by the National Institutes of Health, intervention provider to practice spe- showed significantly better social skills a shift away from more commonly used cific social skills, such as how to enter a following the intervention. However, interventions that focus on training children playground game or conversation among all intervention groups, children with ASD directly may provide greater with ASD showed no changes in the num- social benefits for children with ASD. The • Peer-mediated: group training with ber of peers they indicated as their friends. study was published online ahead of print the intervention provider for three At follow-up, children with ASD from on November 30, 2011, in the Journal of typically developing children from the peer-mediated groups continued to Child Psychology and Psychiatry. the same classroom as the student show increased social connections despite “Real life doesn’t happen in a lab, but with ASD; the affected student did some of the children having changed few research studies reflect that,” said not receive any social skills training. classrooms due to a new school year and Thomas R. Insel, Director of the National Thomas R. Insel, MD The participating children were se- having new, different peers. Institute of Mental Health (NIMH), a part lected by study staff and teachers and According to the researchers, the find- of NIH. “As this study shows, taking into peers how to interact with classmates who were taught strategies for engaging ings suggest that peer-mediated interven- account a person’s typical environment have difficulty with social skills. Both types students with social difficulties. tions can provide better and more persis- may improve treatment outcomes.” of intervention have shown positive results tent outcomes than child-focused strate- The most common type of social skills in studies, but neither has been shown to be • Both child-focused and peer- gies, and that child-focused interventions intervention for children with ASD is direct as effective in community settings. mediated interventions may only be effective when paired with training of a group of children with social Connie Kasari, PhD, of the University peer-mediated intervention. challenges, who may have different disor- of California, Los Angeles, and col- • Neither intervention In addition to the benefits of peer- ders and may be from different classes or leagues compared different interventions mediated interventions, the researchers schools. The intervention is usually deliv- among 60 children, ages 6-11, with ASD. All interventions were given for 20 min- noted several areas for improvement. For ered at a clinic, but may also be school- All of the children were mainstreamed in utes two times a week for six weeks. A example, peer engagement especially based and offered in a one-on-one format. regular education classrooms for at least follow-up was conducted 12 weeks after the Other types of intervention focus on training 80 percent of the school day. end of the study. After the follow up phase, see Training on page 28 AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 17 PAGE 18 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012 How Science and Evidence Won Out Against Auditory Integration Therapies

By Thomas Zane, PhD, BCBA Researchers have reported that persons sites devoted to AIT have references to Van Loan School of Graduate and with Autism Spectrum Disorders (ASD) research studies that purportedly confirm Professional Studies at Endicott College show higher incidences of sensory proc- that AIT is causally related to improve- essing difficulties than the general popula- ments of behavior and learning. For ex- tion (e.g., Baranek, Foster, & Berkson, ample, at the AIT Institute (2010) web- here are many ways of learning 1997; Gillberg, et al., 1990). Some of site, there can be found a list of 23 re- about our world. One way is these sensory problems consist of abnor- search studies that purportedly support the through science and the scien- mal responses to auditory stimuli, which effectiveness of AIT. tific process. There is a growing could translate into learning and behav- One of the first public criticisms of Tbelief that the methods of science and sci- ioral challenges (e.g., Dahlgren & Gill- AIT was provided by the American Acad- entific inquiry are the standards that bert, 1989). As a result, Berard (1993) and emy of Pediatrics (AAP; 1998), which should be employed when designing and others have proposed a therapeutic ap- published a policy statement regarding evaluating autism treatments. Ideally, by proach aimed at reducing or eliminating AIT and Facilitated Communication. In adhering to common scientific criteria for auditory sensory processing challenges. unambiguous terms, AAP found that AIT acceptable empirical evidence, profession- Berard, a French otolaryngologist, had little to no quality scientifically-based als across disciplines would study a phe- developed the method in 1982 (Berard, research proving it was effective with nomenon and all arrive at the same con- 1993). Although there are variations persons with ASD. AAP concluded that clusion as to its “truthfulness” or veracity. within the field of auditory integration its use was “not warranted.” A conclusion about, say, the efficacy of an therapies (e.g., Samonas, 2010; Tomatis, Two years later, Dawson and Wat- autism treatment would be much more 2010), the general method involves the ling (2000) reviewed the literature that powerful given the adherence to the scien- recipient listening to music that has been existed at that time. They reviewed five tific method by professionals from varying digitally modified to match needs identi- studies, published between 1994 and disciplines all examining the same treat- fied following audiological testing. The 1997. Three of the five included a con- ment from different perspectives. music is often played through head- trol condition. Two of these three stud- Autism is known as a “fad magnet” phones, with multiple sessions across sev- ies found improvement in participants in because of the plethora of treatments eral days (e.g., Dawson & Watling, 2000). both of the conditions, thus no causal available to treat the condition (Jacobson, Thomas Zane, PhD, BCBA The music is altered in some fashion, such relationship between AIT and improve- Foxx, & Mulick, 2005). Because of the as by dampening or limiting the peak fre- ment in participants could be believed. varying levels of believability and evi- Therapy (AIT) is a useful model for how, quencies, randomly varying the high and One study (Rimland & Edelson, 1994) dence supporting many of these treat- through adherence to the scientific low frequencies on a random basis, or found improvements made by only the ments, there is a duty to be skeptical about method and process, professionals from varying the volume. The music is modi- participants in the AIT condition, but any particular autism intervention until different disciplines can examine an au- fied in particular ways based upon the there was a design problem in which the some minimal level of quality scientific tism treatment and make a judgment needs and challenges of the recipient. researchers didn’t match subjects during evidence exists suggesting that a particu- about whether that treatment has evidence The advocates of AIT claim that there pre-intervention. lar treatment has demonstrated positive of effectiveness and should be promoted is scientific evidence to support this thera- results. The story of Auditory Integration to consumers. peutic approach. Indeed, all of the web- see Evidence on page 30 AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 19 Planning For Your Child With Special Needs

By Stephen A. Ehrens, CPA, CLTC services, group housing, transportation mary caregivers. For many families, per- Financial Advisor assistance and personal attendant care manent life insurance is the solution. By Northwestern Mutual Financial Network could be jeopardized. naming the special needs trust as the For this reason, an effective estate plan beneficiary of a life insurance policy, the should include a special needs trust – a family can rest assured that the trust will ne of the most challenging is- legal document in which the family leaves be funded with the resources necessary to sues facing parents of a child chosen resources, such as money or prop- provide for the future financial needs of with special needs is planning erty, directly to the special needs trust, their loved one with special needs. O for their child’s future without which is managed by a trustee on behalf them. Financial planning for families with a of the person with the disability. The trus- Planning Considerations child with special needs often requires the tee is given absolute discretion to decide development of a plan that honors the future when and how distributions are made There are important considerations needs of their loved one, with sensitivity to from the trust for the benefit of the trust parents can make when planning the fi- the rules regarding government eligibility beneficiary, thus ensuring that govern- nancial future for children with special for programs and services. The child’s par- ment benefits are preserved. Grandparents needs. Here are a few suggestions: ents, grandparents and other relatives may and other relatives may also choose to desire to coordinate their planning to best designate the trust as the beneficiary of a Prepare, review and revise legal docu- serve the interests of the child. With ever- portion of their estates. There are several ments - Parents should regularly monitor changing laws and legal procedures, it’s im- types of special needs trusts that serve legal documents such as wills, trusts, power portant for families to regularly revisit their different purposes and laws affecting of attorney documents and healthcare prox- financial plans to ensure their child with trusts vary from state to state. It is impera- ies to make sure they are relevant and prop- special needs is well prepared for the future. tive that the family work with a knowl- erly worded. At the heart of this planning is the de- Stephen A. Ehrens, CPA, CLTC edgeable attorney and a financial profes- sirability to preserve the child’s eligibility sional in creating and maintaining a spe- Develop a clear vision of how you want for most publicly funded disability related bility problems for the child. An inheri- cial needs trust. your child to live if both parents are no programs. Maintaining eligibility for basic tance worth as little as a few thousand longer around - The family’s planning government programs can be vitally im- dollars could disqualify an individual with Funding the Trust efforts should reflect their hopes, dreams portant, although sound financial planning disabilities from most federal benefits, and aspirations for their loved one. will also take into consideration the fact such as supplemental security income Building a proper roadmap for all of that government benefits likely will not (SSI) and Medicaid, as well as risk quali- the family’s financial goals and objec- Develop a written Letter of Intent that meet all the child’s needs. fication under some state programs. This tives is extremely important. For some will assist future caregivers - Having a is an enormous loss for many, reports the families funding a trust may require a blueprint that provides vital information Special Needs Trusts National Information Center for Children reallocation of the assets they already regarding the child’s physical and mental and Youth with Disabilities (NICHCY), have, while others may seek to ensure status, likes and dislikes, medications, Many families are unaware that the since critical services such as supported that there are additional funds available receipt of an inheritance may cause eligi- employment and vocational rehabilitation for their child upon the death of the pri- see Planning on page 32 PAGE 20 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012

Learning Style Preferences of Students with Autism How They Align or Differ From Their Typical Peers

By Dr. Diana Friedlander cert with that of other students identified as whose academic performance was at an Special Education Teacher having other special needs such as Attention elementary level and who had a diagnosis Deficit Disorder or Emotional Disturbance of Autism Spectrum Disorder self- (Braio, et al., 2001; Brand ,1999; Fine, reported their preferred learning styles eveloping successful educa- 2002; Greb ,1999; Majewski,1990). using the ELSA computer-based self- tional opportunities for students The similarities and differences in the assessment. The findings, as related to with autism has long been a learning preferences of students with autism these five strands, indicated that there challenge for educators. This in comparison to their typical peers was were significant commonalities in the challengeD may well be due to the fact that investigated and the possible uniqueness of manner in which students with autism students with autism have unusual intellec- their learning preferences as a group was preferred to learn (Friedlander, 2010). tual and academic skills profiles making it examined by responding to the following Students respond to a number of envi- difficult for teachers to accurately assess questions: Are there common learning-style ronmental factors when learning. This re- students and align curriculum. The rise in preferences among students who are diag- search showed that students with autism the incidence of a diagnosis of autism is a nosed with autism, and are there significant indicated a preference for learning in envi- pressing call to educators to develop a bet- differences between the preferred learning- ronments which included background noise. ter understanding of the unique profiles style preferences of students with autism However, 40% of the students tested indi- these students present and to carefully plan and the learning-style preferences of their cated they preferred a quiet environment. educational opportunities which have been typical elementary level peers? Students also indicated a strong preference thoughtfully created with mindful consid- Data on student learning-style prefer- for bright light while learning compared to eration of student preferences. All learners ences were collected from student re- dim light and a significant preference for a have a preferred learning (Dunn & Dunn, sponses to questions on the Elementary warm environment, with almost 50% of the 1992). Educators must become more profi- Dr. Diana Friedlander Learning Style Assessment (ELSA) students preferring warm temperatures over cient in assessing learning styles as they (Dunn, Rundle, & Burke, 2007), a com- cooler temperatures while learning. It strive to differentiate instruction based on gation (Burke & Dunn, 2003; Dunn, prehensive diagnostic instrument that con- should be noted that the element of Design their students’ needs. This paradigm nei- Beaudry, & Klavas, 1989; Dunn & De- siders 25 different variables in each indi- which considers a formal or casual arrange- ther classifies learners based on ability nor Bello, 1999; Dunn, Denig, & Lovelace, vidual’s environment, sociological, and ment of the classroom, such as a conven- disabilities but, rather, on their individual 2001; Dunn & Dunn, 1992). Based on the cognitive processing traits as described in tional desk and chair as opposed to a bean preferences and therefore bodes well for knowledge that individual instructional pref- the Dunn and Dunn learning-style model. bag chair or large pillows, did not meet the students with unique skill sets such as erences exist and can be reliably measured, The model consists of 20 elements, meas- more stringent level of significance (.025) those seen in students with autism. this study extended previous research to ured by the 25 variables in five strands: chosen for this study. However, the level of Several researchers have documented include a population of students with autism Environmental, Emotional, Sociological, significance was found to be .035, which the positive effects of teaching to all stu- who were not specifically identified in pre- Physiological and Psychological. had the researcher opted for a more dents’ preferred learning-style and their vious research and found the uniqueness of A sample of 52 students attending a work served as a foundation for this investi- its findings for this population to be in con- private school in a large metropolitan area see Learning Style on page 34

Supporting Academic Success with Assistive Technology

By Lorianne Hoenninger, MS, ATP pencast to the class webpage. Students ceive access to digital versions of novels Accessible Learning Technology Alternatives can replay the pencast video at home, to and textbooks. Once registered, the included support their mastery of the material. free “Read:OutLoud” app will read the While the Echo Pen is an excellent so- books aloud to the student, with word by chools are challenging environ- lution for students who handwrite, for stu- word highlighting, facilitating reading com- ments for all learners, especially dents who prefer to type, the Apple iPad prehension. Bookshare also has an iPhone those with disabilities. Students can be a resource. There are applications app called “Read2Go,” which enables stu- S with Asperger’s Syndrome are par- (apps) or programs that provide a similar dents to see and hear their downloaded ticularly vulnerable, as they often bring a function to the Echo SmartPen on the iPad. books on their iPad, iPhone, and iPod touch. strong intellect to the classroom, but deficits “PaperDesk” by WebSpinner, LLC and Many students benefit from access to in social, language and motor skills nega- “AudioNote” from Luminant Software, online resources to support learning at tively impact their success. Fortunately, im- Inc. both synchronize audio to typing so home. There are many free, online tools provements in technology have resulted in a that later, users can tap any typed word and that could be used to support study skills, variety of commercial products that can help jump to that portion of the recording. while providing an alternative to the man- students compensate for their disabilities. For students who need to type their ual production of flash cards. For students who experience difficulty responses on worksheets, the Apple iPad 2 Khan Academy (www.khanacademy.org) with note taking, the LiveScribe Echo has a camera that can scan worksheets into is a website with a library of over 2,400 SmartPen (about $150 from BestBuy or the device. Apps such as “GoodReader” free videos demonstrating various math Amazon) may be beneficial. This tool links by Good.iWare Ltd. provide students with and science concepts. Similar to a pencast audio to the written word and is of value the option to snap a picture of a work- approach, these videos can be replayed as for students who cannot write notes effi- sheet, annotate it with their typed re- needed to master new concepts. ciently, and/or for students who would sponses, and then email or upload their Study Blue (www.studyblue.com) is benefit from re-listening to information at completed work. one of the newest online flash card web- their own pace. With the Echo SmartPen, Students with strengths in the auditory sites. Flash cards can be created on the students can focus on the content of the Lorianne Hoenninger, MS, ATP modality, who often benefit from text-to- computer, with text, audio and graphics, presentation while they jot keywords and speech supports, will appreciate the and then uploaded to mobile devices for drawings for later search. Similarly, stu- the computer and to mobile devices and “ZoomReader” app by Ai Squared. Similar on-the-go studying and practice. dents can create their own audio notes for saved as “pencasts” for independent study to desktop computer applications such as Evernote (www.evernote.com) is a free studying, by writing down vocabulary and review. Since pencasts replay step by Kurzweil 3000 or Read and Write Gold, online service available for computers and words and recording the definition. For step, exactly as they were written in the ZoomReader snaps a picture of print, changes mobile devices that allows students to store students who find it difficult to focus for LiveScribe notebook, they are also very it into text and reads the words aloud. and organize information including notes, the entirety of each class, use of the Echo useful for teachers for the creation of re- Bookshare (www.bookshare.org) is a websites, audio, pictures, etc. that they SmartPen allows them to re-listen to the view materials. For example, a teacher web-based resource that is available for free gather from the internet for research projects class discussion at a later time, catching up could write out all the steps in a math to all school districts in the USA. Eligible or personal reasons. Captured information on any information they may have missed. problem, verbally explaining the process students with reading, physical or visual Audio notes can also be uploaded to as it is written, then save the resultant deficits can enroll with Bookshare and re- see Technology on page 25 AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 21

that his constant fussiness would subside Our Story along with his perpetual ear infections and reflux. Little did we know the fun eople often ask me how I knew was just beginning. something was wrong with Jack, People usually want to know when and how old he was when we we knew something was wrong. Back in noticed warning signs. Obvi- Buffalo, NY, Joe and I once took the ouslyP autism unfolds differently for each two boys to an Italian restaurant we individual; some demonstrate symptoms loved called Rizzo’s. Joey was about a very early on, while others grow and year and a half and Jack around six interact normally until a particular age months. I distinctly remember them both and then they seemingly morph into an- dressed in matching snowflake pajamas, other person altogether. and Jack was sitting up in a high chair From what I’ve read and heard from for the first time. As we enjoyed a nice other parents, the development of this meal people stopped to comment on tricky disorder is as unique as the minds their likeness and closeness in age. All of autistic people themselves. And so this in all, a lovely evening. So why does is our story with a little boy named Jack. this memory make me so sad? Because it’s the last time I remember not worry- Jack is my second son, and he was ing about Jack. born 13 months after our first son, Joey The next six months were some of the (Public service announcement: You can most trying times in my life as a mother. get pregnant while breastfeeding). My I can’t say there was a light bulb mo- pregnancy and delivery were very nor- Jack (second from left) and his siblings ment where we knew with absolution mal and he arrived on Mother’s Day; one that he had autism, but I always had a day later than his due date. A whopping know the obstetrician’s birth date or the throat specialist revealed reflux and even- gnawing pit in my stomach and a strong nine pounds, three ounces, he was pro- color of his radio. What he did come out tually landed us in the operating room sense that something was just not right. nounced healthy and we took him home doing was coughing, sneezing, and fuss- having tubes placed in his ears and his His language wasn’t developing nor- a day later. ing. He developed congestion around adenoids removed when he was five mally. He never pointed or gestured, and Those of you who know Jack person- three weeks and battled a seal-like bark months old. he had a difficult time managing solid ally may be surprised to learn he did not and dripping nose from that point for- Once he had surgery we were hopeful spring from the womb demanding to ward. Repeated visits to an ear, nose, and things would get easier with Jack, and see Our Story on page 24 PAGE 22 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012 Robin’s Voice

A Resilient Mom’s Commentary on Autism

Show Me The Science - Advice for Parents Seeking Treatment

By Robin H. Morris message to be aware of snake oil or quack packed up our 4 year old autistic non- Freelance Writer remedies. verbal son and traveled to Montreal to Our son is now 24 years old, and we attempt auditory training. I had read The are seasoned veterans, living with autism. Sound of a Miracle by Annabel Stehle and erriam Webster’s Medical I can share over 20 years of interventions we decided that, once again, a benign Dictionary defines science and I believe that evidence-based practice procedure was a win-win situation. Our as: “knowledge or a system is our best hope. son wore earphones tied to his hat of knowledge covering gen- (because he tried to tear them from his eralM truths or the operation of general laws The Science, Not the ears) for 2 solid weeks. We returned to the especially as obtained and tested through Sentiment, Must Prevail US, without regret, but there were no the scientific method and concerned with whistles or bells that rang to say “eureka, the physical world and its phenomena.” I remember that when my Dad was it’s a miracle!” Ironically, another more The Scientific Method asks a question fol- succumbing to colon cancer in 1996, a pressing issue intervened. Our son devel- lowed by research, hypothesis, experiment, well-meaning friend suggested we try oped a type of parasite condition (we were analysis and conclusion. Ironically, the shark cartilage. Given that our options told that it was possibly due to his drink- internet, which is often a stunning source of were depleted and that we considered it a ing the lake water in Canada) that was so cutting edge ideas, can also be a conduit of benign intervention, my father tried the severe; it rendered him 24 pounds, at age misinformation, inciting rogue theories. pale cream-colored powder, stirred in a 5. The skeptics might now cry, “Leaky Willard Duncan Vandiver, the Con- glass of orange juice. He quipped, “I’ll gut syndrome, prevalent in autism.” Nev- gressional Representative from Missouri, just imagine these little sharks, like pac- ertheless, he was hospitalized and a myr- made a statement in 1889 to express that men, destroying my cancer cells.” He died iad of anti-fungal antibiotics were admin- Missourians were particularly astute and a week later, from the cancer that mo- istered. He was denied all food by mouth, not easily fooled. “I’m from Missouri; Robin H. Morris nopolized his life for 7 years. No regrets in order to determine cause. Miracle of you’ve got to show me.” Duncan may not about the shark cartilage, though. We miracles, whether it was the behavioral have realized the impact of his words. we are often willing to plunge into any smiled at his joke, and that was it. modification (no food) or auditory therapy Whatever barriers or challenges that have intervention. The conflict of Science vs. So here we are an auspicious group, or just fate, he uttered his first clear sen- blockaded my path, certainly have met Sentiment is almost tangible. My one cau- we parents of autistic children. Full dis- tence, “I want spaghetti!” with a “show me” attitude. Parents of au- tion and caveat is that there is money in closure: my initial venture into the world tistic children are so very vulnerable that autism these days. It is the most practical of rogue treatment for autism was when I see Show Me on page 27

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For information: NADD, 132 Fair St., Kingston, NY 12401 (800) 331-5362 - [email protected] - www.thenadd.org AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 23 The Cybility Jobs Program Story

By Donald M. Fitch, MS atric issues (e.g. Schizophrenia, Depression, knew which work skills were essential to Executive Director Bipolar Disorder, PTSD, etc.), we have not generating quality letters, tables and Center for Career Freedom been very effective with persons diagnosed charts, internet research, data entry, billing on the Autism Spectrum. and many other office tasks. We felt our Our traditional Instructor-led small challenge was to transform what Micro- ast July, Scott’s mother called us classes require students to maintain their soft’s software engineers and NYS Ed’s advocating for her son to be en- concentration for fifty minutes, three academics thought our students needed to rolled in our seven-month-old times per week, for twenty-two weeks (a learn to get a job into what employers said Cybility Jobs Program: “He just total of sixty-six class hours) to become our students needed to get hired! Laged out of Special Ed. He receives SSI proficient in just one Microsoft Office We decided to take our direction from ($769/mo), is twenty-two years old, types Software Program, (e.g. Word, Power- the marketplace because, at the end of the 45wpm, is very bright, spends hours on the Point or Excel). It is very expensive and day, the employers were the ones who internet, but he cannot find any kind of time consuming to staff a school using a decided who to hire and who to fire. What- work. He is Autistic, nonverbal, has traditional instructional modality for a ever skills they would pay for are the skills ADHD, is anxious and will not look at you; special needs population teaching a NYS we had to teach our students. Using the he covers his mouth and grunts. He is 6’2” ED approved Microsoft curriculum. employer as the final authority, we worked and 250lbs. I think some employers may be In our classrooms, our staffing includes a backwards, eliminating everything in our afraid to hire him. I have not been able to Microsoft (MS) certified NYS ED Licensed MS curriculum that didn’t apply to the job. find any NYS funded jobs program for Master Instructor and two MS Certified We were able to reduce the amount of ma- adults on the spectrum, only Day Treat- Assistant Instructors, almost two hundred- terial taught and class time by 70%! ment, which is glorified ‘babysitting.’ I fifty hours of staff time per course, for eight Our next challenge was to figure out know he could earn money using his com- Donald M. Fitch, MS students. The problem is, while there are how to teach an ASD population that puter skills but I don’t know how. I don’t plenty of folks who want to learn MS Of- preferred computers to instructors. They want him spending the rest of his life in a federally funded education stops at age fice Skills and get a well paying $12-$15/hr also preferred visual learning over read- Group Home after I die. Can you help us?” twenty-two. And while there are Vocational job, there aren’t enough MS qualified In- ing pages of text or listening to someone Sadly, Scott’s story was familiar. Ac- Rehabilitation (VR) Programs and Commu- structors who are experienced teaching spe- talk for fifty minutes. After weeks of trial cording to the NYS Office of People with nity Colleges with programs for many with cial needs students. Even if we could find and error we were able to identify the Developmental Disabilities (OPWDD), disabilities, we have found none for folks them, we don’t have the funds to pay them. essential work skills and then, to illus- there are over 20,000 persons diagnosed like Scott in New York or New Jersey. We knew this perpetual lack of funds trate each step using a “comic book” for- on the Autism Spectrum in NYS and As a nonprofit NYS ED licensed Busi- and experienced staff would always limit mat (see Publisher Tutorial on pg. 31). some 8,000 of these are adults. According ness School and a certified Microsoft Office how many students we could serve. In Then, we tested and refined each Tuto- to the CDC, 1 in 110 boys are diagnosed Training Center, we have taught Microsoft business terms, our instructional model rial among three populations, Autistic, Psy- with ASD (about 1,000,000+ in the U.S.), Office job skills to over 2,000 adults with was not scalable. It had to be radically chiatric and “Neurotypical” until the Tuto- and about 40% are nonverbal. disabilities over the past fourteen years with restructured, but how? rial could “stand alone.” That is, the student Whether or not an individual has a de- mixed success. While we are generally ef- Because many of us had years of ex- velopmental, mental or physical disability, fective with persons diagnosed with psychi- perience in the world of business, we see Cybility on page 31 PAGE 24 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012 Difficulty Finding Appropriate Education Leads to the Creation of a School for Students with ASD

By Michael J. Kondor, MA were not hard to get at the time, so we program; however there were 37 students Executive Director applied and were granted a $100,000 loan in his class. It was a Montessori-based The Ridge School within a couple of weeks. Although I felt program. The size of the class was too it was risky, I knew in my gut that both of large and confusing for JM. In the spring, us had to do this and use this money to we removed him from that program and even years have gone by. When I start the school. went to our local public elementary look back and see that I now have We next approached the Hyde Park school. JM seemed to finish the year well a school full of happy students United Methodist Church to rent space for and it was recommended he enter a regu- S who have become lifetime our school, which has 501(c)(3) not for lar first grade class. The students in this friends it makes me realize the importance profit status. They had just finished a class were integrated with a second and of starting our school for children with beautiful new education wing and were third grade class so JM spent a great deal Asperger’s Syndrome. As a teacher I have glad to have us join them. It was important of time with older children. come to realize that Asperger’s is not a to set the school up like this because my At the end of the year the teacher, my disability, it is a true gift. Our students are wife and I were approaching 60 years of wife, and myself decided that the program happy because they have been allowed to age and we wanted to be sure the school was too hectic and confusing for JM so he learn using the abilities they have been would be here for future generations. went into a traditional second grade class born with. with one of the most wonderful teachers An Asperger’s student can visualize History and Inspiration JM could have ever had. She recognized projects designed in their heads. They that JM had Asperger’s and did everything tend to be visual and auditory learners; The Ridge School was started because in her power to accommodate his needs. most often they are like recorders in that of my nephew JM, of whom my wife and This teacher fought hard to get him the they process material slowly auditorily I are legal guardians. JM was diagnosed services that were in his IEP which in- and then are able to repeat this by visually with Asperger’s Syndrome when he was cluded Speech with language pragmatics, reproducing the knowledge they have about 7 years old. He attended early inter- Occupational Therapy, Social Skills, and been presented. These students exhibit vention programs in which his providers counseling. The district was unable to pro- creativity and think outside the box. Many Michael J. Kondor, MA felt he had a mild form of autism. vide these services because they claimed famous people, inventors, artists, and In pre-kindergarten, we enrolled him in they were unable to locate providers. even presidents of the United States a private school because the local public The last two weeks of school he re- probably had Asperger’s Syndrome. to do to understand and enter the world of school only offered a half day program. ceived speech, after which his teacher Starting a school is not easy. The big- an individual with Asperger’s. All other local private schools rejected him decided speech was no longer needed! gest obstacle is MONEY, the second is The money issue was not easy, but the because of the diagnosis of mild autism. When I mentioned to the school psy- proving that what you are doing is right one thing my wife and I had was that, The pre-kindergarten program worked chologist that it was important for him to for the students, and the third is to teach through hard work, we had been able to out well, so we enrolled him in the same the rest, especially other educators, what pay off our home. Home equity loans school for kindergarten, again an all-day see Education on page 32

Our Story from page 21 people were adamant that we were over- looking at. Not long after the kindly anxiety and obsessions. The old saying, reacting. We heard explanations of how man from Teddy Bear Portraits con- “little kids, little problems – big kids, foods. As commonly found with autistic Jack’s older brother was talking for him, nected the dots, our developmental pe- big problems” seems to apply tenfold to children, Jack had limited eye contact and of how children develop at their own diatrician also made her assessment: Jack. But there is a very bright side to didn’t babble or coo. He rarely seemed pace, how he was fine, just fine, and to Autism. all of this. content in his own skin and fussed con- let it go. During this time I learned a Or more specifically, Pervasive Devel- The bright side is that Jack is extraor- stantly - I dubbed him “Tuggy” because very valuable lesson; I am the only advo- opmental Disorder Not Otherwise Speci- dinary. He’s traveled so incredibly far every morning I woke to the sounds of his cate for my children, and if we didn’t fied (PDD-NOS), a stop on the slippery since those early days of tantrums and non nasally whine. fight for Jack no one would. If I succeed bell curve of autism. In a nutshell, PDD- -verbal communication, and is steadily Early on people were almost tools to at nothing else for my entire life, I will NOS is characterized by delays in sociali- reaching goals we once thought impossi- Jack. He would take my arm and lead me be content knowing I did everything I zation and communication. ble. Now I actually hold conversation to the refrigerator or toy he wanted, plac- could for him from the very beginning. It I’ve heard parents of an autistic child with the very boy I didn’t expect to speak ing my hand on the desired object. We’d wasn’t easy. describe a period of grieving and be- full sentences. I listen to him play with his play a game at mealtimes where Joe Right about this time our third son, reavement immediately following a di- siblings and read books aloud, and my would point to me and repeat, “Mommy! Charlie, came along and when I re- agnosis, a time where they mourned the heart soars. Jack, look at Mommy! This is Mommy.” turned from the hospital after his deliv- loss of a normal child. While very un- As his language improves I get a He seemed to have no idea who we were. ery, Jack strode past me as if I were a derstandable, I never experienced sad- little peek inside his remarkable mind. It was chilling. floor lamp (OK, a chubby floor lamp in ness in that way, I think because I al- Last week he asked me what color I see And tantrums? Whew. All I can say is stretch pants, but you get the idea….). ways knew with certainty something for Monday. I explained that I don’t see I should’ve done commercials for Secret My sister came to visit and for the first was wrong and that he wasn’t develop- days as colors and asked if he did. Al- Antiperspirant because it was the only time someone in my family validated ing normally. Frankly, I was relieved. It most confused, he replied that every day thing standing between me and a my fear. As she watched him trace the was a relief to have a name to the behav- was a color and rattled off which colors drenched shirt each time I had to take him same grout line with his finger she gen- ior, to be able to explain why he insisted he associated with which day. I was to the grocery store or couldn’t figure out tly agreed that yes, maybe there was on taking the vacuum apart over and astounded. that he wanted milk. He could rage and something off. over during play dates. It was a relief Saying that I’m lucky to know Jack bang on the floor for what seemed like I worked four days a week in those that I wasn’t crazy – that something was doesn’t do it justice. And the things he’s hours out of frustration. And really, who days, and both Jack and Joey were in wrong with my adorable little boy and taught me? Well, that’s almost another could blame him? childcare. One day the center had a pho- we needed help. We accepted his diag- essay. He’s taught me to trust my in- When Jack was about eight months tographer come in for class pictures and nosis and forged ahead, getting him as stinct in the face of challenge, to never old our pediatrician referred us to early I went in to see if I could help. Jack was many early services as we could. give up on him, and that Thursday is intervention services for an evaluation about two at this time, and I remember Sometimes after I explain our path to purple. and we started to become acquainted sweating as I chased him around the his diagnosis, people will ask me what So that’s the entire history of with terms like “joint attention” and playroom, trying to get him to listen to life is like with Jack now. I wish I could Jack….all seven years, seven months, and “self-directed.” After many, many pain- me and sit still. The photographer – a say after nearly six years of services, three days of his beautiful life. I can’t wait ful sessions where I watched through stooped man in his sixties – tried to re- IEP meetings, paraprofessionals, and to see how the rest of his story unfolds. double-sided glass as a speech therapist assure me by saying “Don’t you worry! therapies that he’s shed his diagnosis tried to coax language from this boy, we I work with autistic children all the like a second skin and is cured, but that Do you have a story of your own to were offered in-home services for time!” It stopped me cold. Although no is not the case. While he’s outgrown share or want to comment on this article? speech and occupational therapy. At this one from early intervention or the doc- many of his earlier behaviors like whin- Email me at carrie@dovetaildental. Car- point he was 16 months old. tor’s office had uttered that term yet, I ing and non-communication, they’ve rie Cariello lives in New Hampshire with In the midst of all this, many, many knew in my bones that’s what we were been replaced by other issues such as her husband and five children. AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 25 Acting Makes the Aspergers Go Away

By Julie Reuther What have you done to overcome these Mother challenges? “I try to act normal when I’m around other people. To fit in better with other kids, I have found comfort in sing- t was the third night of production ing, acting, and dancing. When I’m up on of Albany’s Park Playhouse Kids’ stage singing for my schools Variety or Annie Jr. when eleven little girls, Follies show, the other kids in my school ages 9-12 who landed sought-after actually think I’m cool.” Iorphan roles, found themselves in a bit

of a predicament. They were up on the Please explain why acting and/or thea- outdoor stage for the “Hard Knock ter is important in your life: “Theatre is Life” reprise in scene one after Miss important in my life because it is fun and I Hannigan had just stormed off because get to pretend to be a character. When I Annie got away in Mr. Bundles’ laun- play a character I am not myself, Phoebe dry bin. As written in the script, the with Aspergers. Theatre also helps me to girls would laugh and sing praises be more social. I take a lot of interest in all about Annie’s escape from the orphan- the kids and their characters in the play.” age. But then there were technical diffi- culties and their musical cue didn’t turn Realizing that it is still very early in on. The little girls improvised extra Pheobe may have Aspergers, but musical theater has allowed your life, please tell us about your great- laughs and giggles in the hopes they her to achieve success and build self-confidence est dreams and goals: “I want to be a would soon here the music. The clock famous actress and singer for other kids ticked away but still no music and some girls through an unexpected situation. with these challenges. We made sure when I’m around 15 years old and I’ve people in the audience just began to What many parents and audiences that the application would be confiden- been really trying to work up to that. I catch on to an issue. Then all of a sud- members did not know is that little girl tial so she would not be labeled by the always want to be involved in theatre. den the orphan standing on the end, playing Duffy has Aspergers. other parents and children. I sat down Someday, I hope to help other kids that eleven year old Phoebe, playing the The next night, Park Playhouse held with Phoebe and asked her the ques- face the same challenges that I do.” role of “Duffy” sang out loud and clear, a special ceremony before the show to tions and we discussed them and this is a line that the orphans usually share, award two cast members the Carol But- what she wrote: Then about three weeks later, she re- “Lucky kid she got away.” While sing- ler Simmons Memorial Scholarship. ceived a letter in the mail from Park Play- ing this line she focuses her eyes on Months prior, after a competitive audi- Please tell us about the challenges you house’s scholarship committee. Congratu- Belle playing “Molly” who then knew tion of over 100 children and being face: “I have Aspergers. It is hard for me lations!” it read. Phoebe accepted the to sing her line a cappella too, informed of her role, Phoebe applied because I pace when I am bored and it’s award on stage proudly. Carol Butler’s “Running free in NYC!” It seemed as if for the scholarship. The scholarship kind of hard for me to take interest in husband had driven from NYC to hand Park Playhouse had a hero that night. asked cast members to write about their other people. I am also not good in school Phoebe “saved the show” by leading the challenges and how theater helps them sports like the other kids.” see Acting on page 30

Technology from page 20 ask for help, they can read the “crib notes,” mentally rehearse the procedure, and then A Possible Cause of Autistic Disorder: is automatically processed, indexed, and confidently engage in the activity. made easily searchable. Users can add If QuickCues does not contain the exact Non-Coding mRNA tags and organize notes into different vir- social script a particular student requires, tual notebooks. customized social cues can be created with Study Stack (www.studystack.com) is the aforementioned online flash card apps, By Edward R. Ritvo, MD a website where students can create then uploaded to inexpensive apps such as UCLA Medical School stacks of electronic cards that can be re- “Talking Flash Cards” by theraTech Solu- viewed online, printed or exported to tions, LLC, “Touchcards” by Steven PDA, cell phone and/or iPod. Each stack Romej, and “Flash Cards” by Resolute he new field of Molecular Ge- can be viewed in flash card mode, in Digital, LLC. Check with each online netics is on the verge of unrav- match mode, as hangman games, cross- flashcard maker as to which i-device or eling the mystery surrounding word, word find or bug match. Flash- android app they are compatible with. the cause of Autistic Disorder. T For many years it has been known that carddb (www.flashcarddb.com) is a simi- For further information on apps lar site, but with a more extensive selec- for social skill development, check genetic influences exist in some cases of tion of premade flash cards. These cards with the autism directory at Autistic Disorder (AD). For example, if can only be reviewed or printed. Other blog.autismspectrumdirectory.com/2011/0 one child in a family has autism there is a sites such as Flashcard Machine 1/14/ipad-ipod-touch-and-iphone-apps- 10 percent chance that each of their follow- (www.flashcardmachine.com), Brain social-skills-social-stories-and-scripts/. ing children will also have autism; this is Flips (www.brainflips.com) and Quizlet Finally, no discussion of current, inexpen- called the sibling recurrence risk estimate. (www.quizlet.com) enable students to sive technologies would be complete without Also, if one twin, identical or not, has au- add graphics and sound to their study mention of the Google Docs. Google Docs tism, there is a significantly higher chance cards, then play games and quiz them- includes an online “Cloud” word processor. that the other one will also have AD. selves. Finally, Flashcard Exchange Compositional writing begun in Google It has also been known for many years (www.flashcardexchange.com) is a site Docs can be accessed from both home and that there are two types of genetic instruc- that is particularly teacher-friendly, as it school, facilitating difficulties with paper tions carried in our genes (DNA). The first saves statistics on the student’s use of the management. If a student forgets to print out, type of instructions direct, or code for, the study cards, presenting the student’s transport or simply loses an assignment, he/ building of the specific parts of the body, right/wrong responses in a pie chart. she can easily access the assignment from such as bones, blood vessels, nerves, etc. Technology can also support social any internet-connected computer. These coding instructions take up only Edward R. Ritvo, MD skill development. One very interesting The previous mentioned technologies are about two percent of our DNA. Efforts to use of the Apple “i-devices” is as a source just a sampling of what is available for stu- identify abnormalities in non-coding parts are located on the other ninety-eight percent for social “crib notes.” The Fraser Child dents with disabilities. With their support, of genes in Autistic Disorder have met with of the DNA - the part that does not code for and Family Center in Minneapolis students can be more successful than ever. little success. And while some cases have specific proteins. This is called non-coding (www.fraser.org/our_services/by_location/ been traced to specific abnormalities of DNA. They are copied, or transcribed, in fcfc.htm) have created a series of short To learn more, please contact DNA coding parts of genes, they account the nucleus of cells by non-coding RNA videos and slide shows that they distribute Lorianne Hoenninger by email at accessi- for less than 5 – 10% of all AD cases. which, when it goes to work in a cell’s cy- through Apple app called QuickCues [email protected]. This article was The second type of instructions directs toplasm, is called messenger or mRNA. ($4.99). If a student is unsure of how to originally published in the AHA Fall when the parts of the body develop and answer the phone, engage in small talk or 2011 issue of “On the Spectrum.” where they get placed. These instructions see mRNA on page 34 PAGE 26 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012

New Trends from page 1 sis, migration and cytoarchitecture cortical subdivisions. However, in spite of fied investigators. The tissue collection (Wegiel et al 2010a). A majority of devel- evidence (a) that the development of the includes samples from normal individuals changes and clinical phenotypes, the link opmental changes are mainly quantitative serotonergic system of autistic individuals (a control cohort) and individuals with de- between genetic factors and brain struc- and only unbiased morphometric methods is altered, (b) that these alterations con- velopmental disabilities other than autism. tural and functional alterations. It is an- can detect significant changes of brain tribute to the clinical manifestations of ticipated that the integration of genetic development. autism, and that (c) pharmacological in- New York State Autism Consortium and clinical studies with neuropathologi- terventions result in significant benefits of cal and biochemical studies of the brain 5) Changes in the developing and the ag- some autistic patients, enterochromaffin New York State Office for People with will help in the discovery of the mecha- ing brain of autistic individuals have a cells of the intestines, the source of blood Developmental Disabilities (OPWDD) nisms that lead to the autistic phenotype global character with brain region, neu- serotonin, and the raphe nuclei, the only supports more than 16,000 people diag- and in the design of mechanism-oriented ronal population, neuronal circuit and source of serotonin supporting the entire nosed with autism and ASD, and the num- targeted treatments. neurotransmitter system specific altera- brain function and contributing to autistic ber of autistic subjects increases every Our knowledge of the clinical phe- tions. Therefore research on autism re- phenotype were not examined. These ex- year.. In response to the growing autism notype and genetic factors in autism is quires the combining of localized models amples of gaps in our knowledge of the crisis, in 2008, the OPWDD created a New based on the examination of thousands into global models of brain developmental pathology of autism indicate that changes York State Autism Consortium under the of individuals with autism. However, a defects, keeping in mind that each autistic in standards of tissue preservation for leadership of the Institute for Basic Re- review of the world literature revealed patient is unique and all statistical strate- research are necessary. search in Developmental Disabilities that between 1980 and 2003, only 58 gies are dealing with heterogeneity. (IBR). The aim of the Consortium is to brains of individuals with idiopathic Age Associated Alterations in the The Role of Brain and Tissue Banks establish the infrastructure, resources and autism were examined postmortem Brain of People Diagnosed with Autism collaboration necessary to advance basic (Palmen et al 2004). This low rate of One of factors contributing the low and applied research on autism. The con- brain donation for research is the major In contrast to majority of human ill- rate of tissue donation is the limited sortium collaborates with affected families, obstacle in research progress. Neuropa- nesses, autism is a life-long disability with knowledge of the general public about advocacy organizations, research institu- thological studies are usually limited to age-specific alterations. The global legal and technical aspects of donation as tions and public agencies to implement a few brains. Due to the very low rate of marker of age-associated alterations is well as the important role of postmortem new research on the causes, mechanisms brain tissue donations for autism re- abnormal acceleration of brain growth in studies of the brain and other organs in and treatment of autism. One of tasks of search and the etiological and clinical autistic children 1 to 2 years of age research progress on autism. Banks play a Consortium is support and expansion of diversity of autism, the pattern of de- (Courchesne et al 2001, 2003, Dawson et critical role in cooperating with families tissue donation and banking, including tected changes is incomplete and incon- al 2007), slower rate of brain growth at and in obtaining clinical records. Brain brain, and other tissues and organs. sistent, and neuropathological diagnos- age of 2 to 4 years (Courchesne et al and tissue banks services for families are tic criteria of autism have not yet been 2001, Hazlett et al 2005), and a decrease free of any charges to them. Tissue sam- Jerzy Wegiel, PhD, is the Director of established (Lord et al 2000, Pickett and to control levels in the middle to late ples as well as clinical data are distributed the New York State Brain and Tissue Bank London, 2005). childhood period. The period of acceler- to qualified researchers in a coded and for Developmental Disabilities and Aging ated brain growth rate precedes and over- anonymous form. The next of kin, who and the Department of Developmental Research on Autism Requires laps with the onset of detectable behav- signs the donation document, is eligible to Neurobiology at the New York State Insti- New Standards of Tissue Banking, ioral changes, and the period of decelera- receive a neuropathological report based tute for Basic Research in Developmental Handling, Distribution and Sharing tion coincides with worsening of autism on examination of the brain and histopa- Disabilities on Staten Island, New York. symptoms (Dawson et al 2007). Recent thological sections, also without charges. Daniel Lightfoot, PhD, is the Director Brain banking is a particularly impor- data indicate that these changes are asso- To match to the complexity of modern of Autism Tissue Program, Autism Speaks, tant tool for making progress at a time ciated with an increase of the total number research, the banks adopt complex proto- San Diego, California. when new technologies in molecular biol- of neurons (Courchesne et al 2011). Our cols of tissue collection, clinical data ac- Jane Pickett, PhD, is the Director of ogy, biochemistry and confocal micros- studies reveal that in the majority of ex- quisition, clinical and neuropathological Brain Resources and Data, Autism copy are opening up new avenues of re- amined brain regions, the volume of neu- diagnosis, tissue quality evaluation, tissue Speaks/Autism Tissue Program (ATP), search on autism. However, autism spec- rons is less than in normally developing preservation, processing, storage, and San Diego, California. trum disorders are so different than other children, but these differences are almost distribution. One brain provides hundreds W. Ted Brown, MD, PhD, is the Direc- targets of postmortem studies that they undetectable in the brains of teenagers/ of tissue samples dissected with anatomi- tor of the New York State Institute for require appropriate research design, and adults (Wegiel et al 2010). Identification cal precision to obtain information about Basic Research in Developmental Dis- standards of tissue acquisition, preserva- of the self-regulatory mechanisms that can specific brain structures or neuronal popu- abilities and its George A. Jervis Clinic tion and distribution: lead to brain size and neuron size normali- lations and samples are distributed to doz- located on Staten Island, New York. zation in early childhood may result in ens of projects (Vonsattel et al 2008). 1) Autism affects the entire life of an indi- treatments that reduce or eliminate devel- Estimates of the brain bank cost per brain References vidual with modifications of the pheno- opmental delay and restore correct trajec- preserved for postmortem studies is in type during childhood, adulthood and tory of brain development and function. range between $10,000 to $30,000 in US Courchesne, E. (2001). Unusual brain aging. To detect and characterize develop- Altered brain development suggests that and 10,000 to 15,000 euros for the Brain- growth patterns in early life in patients mental and aging associated changes, the the aging autistic brain will be also modi- Net Europe consortium (Hulette 2003). with autistic disorder: an MRI study. Neu- cohort examined must represent the entire fied, but late age-associated changes are However, brain and tissue banks efforts rology 57, 245-254. lifespan and the number of examined indi- almost unexplored. reduce the risk of inclusion in dozens of viduals must provide statistical power to research projects and publications a case Courchesne, E., Carper, R., & N. Akshoo- detect significant differences. Brain Only? with an incorrect genetic, clinical, neuro- moff. (2003). Evidence of brain over- pathological classification or affected by growth in the first year of life in autism. 2) Clinical and neuropathological studies Major research efforts are focused on postmortem degradation distorting bio- Journal of American Medical Association, reveal a broad spectrum of inter- the brains of autistic individuals. How- chemical and neuropathological studies. 290, 337-344. individual clinical manifestations, most ever, clinical records suggest that im- As a result, tissue banks contribute to likely as a cumulative effect of genetic mune, digestive and peripheral nervous elimination of false results, increased Courchesne, E., Mouton, P.R., Calhoun, and epigenetic factors determining both system alterations are also present in au- quality of research and reduce the costs of M.E., Semendeferi, K., Ahrens-Barbeau, structural and functional alterations. This tism. One abnormality is of particular the individual research project. Autism C., Hallet, M.J., Barnes, C.C., & Pierce, heterogeneity requires large enough co- interest. Hyperserotonemia in autism, tissue banking is supported by the Autism K. (2011). Neuron number and size in horts to identify and characterize major identified as an increase in the serotonin Speaks/Autism Tissue Program and new prefrontal cortex of children with autism. autism phenotypes and mechanisms shap- level in blood platelets by up to 50% is a initiatives of the New York State Autism Journal of American Medical Association, ing these phenotypes. frequent finding. A significant ameliora- Consortium. 306, 2001-2010. tion of obsessive-compulsive rituals and 3) Autism is diagnosed in association with routines, and anxiety and aggression in Autism Tissue Program Dawson, G., Munson, J., Webb, S.J., Nalty, other syndromes/disorders, including frag- subjects with autism treated with selective T., Abbott, R., & Toth, K. (2007). Rate of ile X syndrome, chromosome 15 duplica- serotonin reuptake inhibitors, such as In response to both families and re- head growth decelerates and symptoms tion, Down syndrome, seizures, and intel- fluoxetine (deLong et al 1998, Kolevzon searchers, requests to the Autism Tissue worsen in the second year of life in autism. lectual deficits. It requires parallel studies et al 2006) confirms the hypothesis that Program of Autism Speaks provides infor- Biological Psychiatry, 61, 458-464. of reference cohorts. the serotonergic system is altered and that mation and support for families donating modulation of these developmental altera- tissue for research and concentrates on en- DeLong, R.G., Teague, L.A., & Kamran, 4) Qualitative developmental abnormali- tions produces clinical improvements. hancing the availability of brain tissue for M.M. (1998) Effects of fluoxetine treat- ties are usually undetectable by routine Blood serotonin is produced by entero- research (www.autismtissueprogram.org). ment in young children with idiopathic neuropathological examination. However, chromaffin cells of the intestinal epithe- To advance research on autism and related autism. Developmental Medicine and modification and expansion of neuropa- lium whereas brain serotonin is produced disorders, ATP coordinates tissue recovery, Child Neurology 40, 551-562. thological evaluation methods reveals a by neurons of the raphe nuclei projecting storage, cataloging, preservation, and distri- broad spectrum of defects of neurogene- from the brainstem to all cortical and sub- bution of brain and other tissues to quali- see New Trends on page 29 AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 27

Autism and Asperger’s from page 14 symptoms in a normative population of and Asperger’s syndrome is based on se- (2000). Diagnostic and statistical manual school children, as well as compare those verity not a different composition of symp- of mental disorders (4th ed. - text revi- age and communicative phrases used by diagnosed with Autism and Asperger’s. toms like, for example, the difference be- sion). Washington, DC: Author. three years of age. Because of the significant The results of our study summarized in tween individuals with Autism versus overlap in the diagnoses of these two condi- Figure 1 (see the ASRS Manual for more those with Attention Deficit Hyperactivity American Psychiatric Association (APA) tions, most medical and mental health pro- details about the methods and results) al- Disorder (see Goldstein & Naglieri, 2011). (in Press). Diagnostic and statistical man- fessions consider Asperger’s as a milder lows for a comparison between a group of Despite widely held belief over the past ual of mental disorders (5th Edition). form of autism or even “high functioning children diagnosed with Autism and a group twenty years that youth with Asperger’s as Washington, DC: Author). autism” despite the fact that it is not deline- diagnosed with Asperger’s syndrome. The a condition distinct from Autism have a ated this way in the DSM-IV-TR. In fact, total ASRS score, three empirically derived better life outcome than those with Autism Center for Disease Control and Prevention proposals for the Pervasive Developmental scales, the DSM symptom score, and eight (Klin, Sparrow and Volkmar, 2000), the life (2007). Prevalence of the autism spectrum Disorder categories for DSM-V have rec- treatment scales containing behaviors spe- course and adult outcome for youth cur- disorders in multiple areas of the United ommended the elimination of the distinction cific to certain areas of functioning are rently diagnosed with Asperger’s may in States, Surveillance Years 2000 and 2002: between these two conditions and instead shown. The ASRS T-scores are set to have a fact be better than those with Autism sim- A report from the Autism and Develop- propose to refer to the combined conditions normative mean of 50 and a standard devia- ply because their symptom profile is milder mental Disabilities Monitoring (ADDM) as Autism Spectrum Disorder (American tion of 10 based on a large representative and they develop functional language at a Network (February 8, 2007). Atlanta, Psychiatric Association, in press). sample of individuals in the US. Recall that much earlier age, typically demonstrating Georgia: Author. The new proposed diagnostic criteria a score of 60 falls at the 84th percentile and a the ability to use language to communicate contain four parts focusing on (1) social score of 70 at the 98th percentile. As this despite pragmatic problems. At this time, Gillberg, C., & Schaumann, H. (1982). communication and social interaction, (2) instrument measures atypical or problematic these data strongly support the decision by Social class and autism: Total population restricted, repetitive patterns of behavior, behaviors, higher scores are indicative of the DSM-V committee to eliminate the aspects. Journal of Autism and Develop- interests and activities; (3) symptoms pre- greater number of symptoms. Asperger’s and Pervasive Developmental mental Disorders, 12, 223-228 sent in early childhood; and (4) symptoms Figure 1 provides a visual means of Disorder – Not Otherwise Specified diagno- that limit and impair everyday life. This observing the differences between children ses and instead provide a single diagnosis of Goldstein, S. & Naglieri J. (2011). Neuro- approach suggests that the distinction be- with Autism and those with Asperger’s. As Autism Spectrum Disorder. cognitive and Behavioral Characteristics tween these two conditions is one of symp- can be seen, the individuals with Autism of Children With ADHD and Autism. tom severity rather than symptom type as and Asperger’s syndrome had nearly iden- Sam Goldstein, PhD, is an Assistant ADHD Report, 19, 10-12. first proposed by Goldstein and Naglieri tical profiles which do differ on elevation. Clinical Instructor in the University of Utah (2009). As part of a standardization process Figure 2 provides a comparison of each of School of Medicine and Clinical Director of Goldstein, S., Naglieri, J. (2009). Autism for the Autism Spectrum Rating Scales the ASRS mean T-scores expressed as an the Neurology at the Learning and Behav- Spectrum Rating Scales - Technical Man- (ASRS; Goldstein & Naglieri, 2009), we effect size, that is, the difference between ior Center. Jack A. Naglieri, PhD, is a Re- ual. North Tonawanda, Canada: Multi- obtained approximately 6,000 protocols each mean expressed in standard deviation search Professor at the University of Vir- Health Systems. containing parent and teacher observational units. In addition to all of the differences ginia and Senior Research Scientist at the reports of children in the general population being statistically significant (p < .01) the Devereux Center for Resilient Children. Goldstein, S., Naglieri, J., & Ozonoff, S. as well as those with specific developmental effect sizes ranged from a low of 0.43 They are co-authors of the Autism Spectrum (Eds.) (2008). Assessment of Autism. New disorders such as Autism and Asperger’s (considered a small effect size) to 0.85 Rating Scale (2009), Assessment of Autism York, NY: Guilford Press. and related conditions. Data were collected (considered a large effect size). The ASRS Spectrum Disorders (2008) and Interven- by 70 site coordinators throughout the Total T-score effect size was 0.78. The tions for Autism Spectrum Disorders Klin, A., Volkmar, F.R., & Sparrow, S.S. United States and Canada. Efforts were largest difference was found for the ASRS (2012). Dr. Goldstein is also co-author of (2000). Asperger Syndrome. New York, made to guarantee that diagnoses were Social/Communication scale. This is con- Raising Resilient Children With Autism NY: Guilford. made in a standard fashion across all sites. sistent with the current conceptualization Spectrum Disorders (2012). As part of this process a group of children of and diagnostic criteria for Asperger’s as Smalley, S., Asarnow, R., & Spence, M. with a specific diagnosis of Asperger’s Dis- a condition characterized by normal early References (1988). Autism and genetics: A decade of order was collected. This study provided the language development. These findings research. Archives of General Psychiatry, opportunity to study the presence of autistic strongly suggest that the difference Autism American Psychiatric Association (APA) 45, 953-961.

Figure 1 Figure 2

Show Me from page 22 harm his liver frightened us. Neverthe- take that route, as it did not make sense told me that it calmed him. I asked him less, given that there is always money to to us. We believed that the science made recently if it was calming or not. His re- Through the years we have tried brush- be made when people are vulnerable, sense. Clogged arteries need to be re- sponse was that, “In the beginning it was ing therapy (with a corn husking brush) to specialists began selling secretin injec- paired surgically. okay, but then it wasn’t.” temper tactile defensiveness, occupational tions charging thousands of dollars for We even allowed our son, then 17 We can circle the drain or move for- therapies, speech therapy, behavioral ther- doses. Recent studies have disputed the years old to try the Hyperbaric Oxygen ward with purpose. Perhaps my apy, and RDI (Relationship Development claim of secretin’s efficacy in the treat- Chamber therapy. I decided to interview “Missouri” ethic has been a guiding force, Intervention), but the trials stopped at ment of autism. him about the experience. I do value his but for our son and his autism, it has invasive procedures. Chelation is another intervention used perception, as it is he is the one who has given us solid ground to stand on. “Show We were not comfortable with the se- to combat autism. It is a process where autism and it is he who got inside that me” is all we can say, and feel hope. cretin trials. Secretin (a drug administered heavy metals, such as mercury and lead, machine. His response was, “It was an during endoscopy to determine gastroin- are removed from the body. I was intro- ‘okay’ deal… It did make me dizzy…I Robin Hausman Morris is a freelance testinal problems) became a newsworthy duced to chelation when my Mother had think it’s not good, it made my ears hurt, writer and can be reached at Robin- item when a mother discovered that her a heart attack 26 years ago. Cardiac by- like an airplane.” When I asked him what [email protected]. Robin is a child became verbal after secretin was pass was recommended, and given that it he meant by “airplane,” was it loud or was parent examiner for Examiner.com - given to her child. The idea of putting a was major surgery, a cousin suggested it the pressure, he indicated “both.” Ini- www.examiner.com/autism-and-parenting- drug into our child that could potentially we try chelation first. We chose not to tially, when he first tried the chamber he in-national/robin-hausman-morris. PAGE 28 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012

Food from page 8 Clinical Application to ful for one student, that he currently eats ing and swallowing disorders: Pathophysiol- Increase Taste Exposure meals of adult sized portions containing a ogy, diagnosis, and treatment (pp. 77-95). increase acceptance, and widen the vari- variety spanning at least 30 foods, and will San Diego, CA: Singular Publishers. ety of consumed foods. As we noted, one of the many problems likely be able to discontinue the need for associated with feeding is a restricted range the gastronomy tube in the near future. Buckley, S.D., & Newchok, D.K. (2005). An evaluation of simultaneous presentation and Summary of Effective Interventions of preferred foods. Recently, it has been This was a significant replication because differential reinforcement with response cost suggested that repeated taste exposure may it extended the Plate A/Plate B research to to reduce packing. Journal of Applied Behav- One of the hypotheses in behavior ana- be a helpful strategy for this problem (e.g., non-vocal participants with a diagnosis of ior Analysis, 38, 405 – 409. lytic intervention for food refusal is that Casey, Perrin, et al., 2008; Paul et al., 2007). autism in a private school/residential set- escape is often a maintaining factor. Chil- A number of researchers have found that ting. Future research is needed to deter- Burklow, K.A., Phelps, A.N., Schultz, J.R., dren who protest and refuse food often repeated exposures to foods has led to in- mine when escape extinction is necessary. McConnell, K., & Rudolph, C. (1998). Classi- have food taken away (and the expectation creased acceptance and a wider range of con- fying complex pediatric feeding disorders. Jour- to eat is thus removed). The most com- sumed foods, and that multiple taste expo- Summary nal of Pediatric Gastroenterology, 27, 143 -147. monly utilized clinical intervention is posi- sures are essential for the effects. These ses- tive reinforcement and escape extinction sions are in alignment with what is generally Feeding issues are among the most resis- Carrie S. W. Borrero, Julia N. Woods, John (e.g., Ahearn, Kerwin, et al., 1996; Piazza, necessary to build ranges of food acceptance; tant to intervention efforts, but can be suc- C. Borrero, Elizabeth A. Masler, & Aaron D. Patel, et al, 2003). The positive reinforce- typically, people must try foods 10-12 times cessfully treated by highly trained clini- Lesser (2010). Descriptive analyses of pediat- ment generally involves access to preferred before they start to like them. The taste expo- cians. Expertise in feeding/food selectivity ric food refusal and acceptance. Journal of Applied Behavior Analysis, 43, 71-88. stimuli for desired eating, while the Escape sures are brief sessions with one bite of food issues is essential, particularly for more Extinction (EE) contingency involves no and once consumed, the session/demand is complex and long-standing difficulties. All Casey, S.C., Perrin, C.J., Lesser, A.D., Perrin, longer permitting escape or avoidance. terminated and the child is given a break. treatment must be coordinated with family S.H., Casey, C.L., & Reed, G.K. (2009). The EE procedures take a variety of Williams has recently suggested the members and caregivers across settings, to Using descriptive analysis in the treatment of forms. A commonly used procedure is the use of a Plate A/Plate B protocol, in which ensure that treatment effects are generalized bite acceptance and food refusal. Behavior Non Removal of the Spoon (Hoch et al., tiny bits of 2 or 3 new or nonpreferred and maintained. There are several behavior Modification, 33, 537-558. 1994), in which the spoon remains by the foods are contained on Plate A and Plate B analytic treatments that have been demon- individual’s mouth until the bite is con- contains 2 or 3 preferred foods. The child strated to be successful in ameliorating Casey, S.C., Perrin, C.J, Merical, C.L, Le- sumed. In other words, the individual can must eat a small bite from plate A to get a these issues. Successful interventions in- Comte, J.M., Milligan, J, & Walsh- not avoid the presentation of the bite. food item (or a drink) from Plate B. clude the use of escape extinction, the use Czekalski, M. (2008). Increasing bite accep- Sometimes, physical guidance is used in In a recent extension of Williams’ work of reinforcement for appropriate eating, the tance and reducing food refusal in a child this procedure as well, to facilitate con- conducted by clinicians at Melmark, an use of stimulus fading procedures to gradu- with autism moving beyond the clinic. Jour- sumption. Behavioral escalations are com- approved private school and residential ally increase the ratio of nonpreferred foods nal of Behavior Analysis in Health, Sports, Fitness and Medicine, 1, 34-44. mon in this approach, especially when first facility for children diagnosed with devel- presented in combination with preferred implemented. These experiences can be opmental disabilities, a Plate A/Plate B foods, and the use of behavioral momentum Kerwin, M.E., Ahearn, W.H., Eicher, P.S., & both messy and stressful for caregivers procedure was used with two individuals to build tolerance for eating nonpreferred Burd, D.M. (1995). The costs of eating: A prompting some to suggest that it may not diagnosed with autism, both with a long items. Procedures that increase the number behavioral economic food analysis of food be feasible for all settings or with inexperi- history of food refusal. One participant was of taste exposures have also been shown to refusal. Journal of Applied Behavior Analy- enced/untrained caregivers. treated previously in an inpatient feeding increase the range of items consumed. sis, 28, 245 – 260. Alternatives to EE have been developed clinic and prior to treatment received the Feeding problems are among the most com- to address the issue of behavioral escala- majority of his daily calories from a gas- pelling target behaviors to address, as qual- Paul, C., Williams, K.E., Riegel, K., Gibbons, B. tion. Differential Reinforcement of Alter- tronomy tube, as he only consumed 3-5 ity of life changes can be dramatic for both (2007). Combining repeated taste exposure and nate Behavior (DRA) procedures provide foods consistently. The second participant the individual and their family. In addition, escape prevention: An intervention for the treat- also had history of severe food selectivity ment of food selectivity. Appetite, 49, 708-711. reinforcement for accepting food or swal- the health consequences of improved feed- lowing bites. Non Contingent Reinforce- resulting in a diagnosis of Failure to Thrive ing, enhanced variety of foods, and im- Piazza, C., Patel, M., Gulotta, C., Sevin, B., & ment (NCR) Procedures provide continuous and was at risk of requiring a gastronomy proved nutrition are substantial. Layer, S. (2003). On the relative contributions access to preferred stimuli. These proce- tube. Both participants had a history of an of positive reinforcement and escape extinction dures work best if highly preferred items intervention including escape extinction. Christopher Perrin, PhD, BCBA-D, is in he treatment of food refusal. Journal of Ap- can be easily identified, and if the individ- The Plate A/Plate B procedure was selected Senior Clinician of the Children’s Behav- plied Behavior Analysis, 36, 309–324. ual can be deprived of those items prior to for these participants because it was pre- ioral Health Program, Amanda Guld, PhD, the sessions. DRA and NCR are often used sumed to be easier for staff to implement BCBA-D, is Director of Professional Devel- Piazza, C. C., Fisher, W. W., Brown, K. A., in combination with EE helping to mitigate with a high degree of procedural integrity opment and Training, and Mary Jane Shore, B. A., Patel, M. R., Katz, R. M., Sevin, the characteristic behavioral escalations (see and less restrictive as an intervention for Weiss, PhD, BCBA-D, is Executive Direc- B. M., Gulotta, C. S., & Blakely-Smith, A. Piazza et al., 2003 and Reed et al., 2004). the children treated, as it did not contain tor of Research at Melmark. For more in- (2003). Functional analysis of inappropriate Some clinicians have altered the ante- escape extinction. The Plate A/Plate B pro- formation, please visit www.melmark.org. mealtime behaviors. Journal of Applied Be- cedent conditions (as opposed to focusing cedure was compared with a condition con- havior Analysis, 36, 187-204. on consequences). For example, there is sisting of the Plate A/Plate B with the addi- References some evidence that simultaneously present- tion of taste exposure sessions in an alter- Reed, G., Piazza, C., Patel, M., Layer, S., ing preferred and less preferred foods can nating treatment design to determine if the Ahearn, W.H. (2003). Using simultaneous Bachmeyer, M., Bethke, S., et al. (2004). On effectively increase the range of accepted taste exposures would enhance the effec- presentation to increase vegetable consumption the relative contributions of noncontingent foods (e.g., Ahearn, 2003; Buckley & New- tiveness of the Plate A/Plate B intervention. in a mildly selective child with autism. Journal reinforcement and escape extinction in the chok, 2005). At times, the ratio/ Although one participant showed some of Applied Behavior Analysis, 36, 361 – 365. treatment of food refusal. Journal of Applied Behavior Analysis, 37, 27–42. concentrations of nonpreferred foods can be progress with both conditions, the Plate A/ systematically changed, to slowly build Plate B intervention did not produce clini- Ahearn, W. H., Kerwin, M. E., Eicher, P. S., Singer, L.T., Song, L, Hill, B.P., & Jaffe, tolerance for nonpreferred foods. Finally, cally significant results for either partici- Shantz, J., & Swearingin, W. (1996). An al- A.C. (1990). Stress and depression in moth- high probability behaviors are sometimes pant, regardless of the addition of the taste ternating treatments comparison of two inten- ers of failure-to-thrive children. Journal of used to build behavioral momentum and exposure sessions, probably due to the low sive interventions for food refusal. Journal of Pediatric Psychology, 15, 711– 720. increase the occurrence of low probability frequency of taste sessions. Once escape Applied Behavior Analysis, 29, 321-332. behaviors. For example, a child may accept extinction in the form of non-removal of Williams, K.E., Field, D. G., Seiverling, L. several presentations of an empty spoon, the spoon was added to the intervention, Babbitt, R.L., Hoch, T.A., & Coe, D.A. (2010). Food refusal in children: A review of and then accept food presented on a spoon bite consumption increased for both par- (1994). Behavioral feeding disorders. In D.N. the literature. Research in Developmental (e.g., Kerwin et al., 1995). ticipants. The intervention was so success- Tuchman & R. Walter (Eds.), Pediatric feed- Disabilities, 31, 625-633.

Training from page 16 friendships. Further studies are needed to (STAART) (www.nimh.nih.gov/health/ covery and cure. For more information, visit explore these factors as well as other pos- topics/autism-spectrum-disorders- the NIMH website (www.nimh.nih.gov). helped children with ASD to be less iso- sible mediators of treatment effects. pervasive-developmental-disorders/nih- lated on the playground, but it did not The study was supported by NIMH, the initiatives/staart/index.shtml) network References result in improvement across all areas of Eunice Kennedy Shriver National Institute program and received additional funding playground behavior, such as taking turns of Child Health and Human Development, from the Health Resources and Services Kasari C, Rotheram-Fuller E, Locke J, in games or engaging in conversations the National Institute of Neurological Administration (HRSA) (www.hrsa.gov). Gulsrud A. Making the Connection Ran- and other joint activities. Also, despite Disorders and Stroke, and the National The mission of the NIMH is to transform domized Controlled Trial of Social Skills greater inclusion in social circles and Institute on Deafness and Other Commu- the understanding and treatment of mental at School for Children with Autism Spec- more frequent engagement by their peers, nication Disorders through the Studies to illnesses through basic and clinical re- trum Disorders. J Ch Psychol Psychiatry. children with ASD continued to cite few Advance Autism Research and Treatment search, paving the way for prevention, re- 2011 Nov 30. [epub ahead of print] AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 29

Future Directions from Page 10 sponsored by Forest Labs and a trial tar- 2001(Croonenberghs et al., 2002a), hope is that such medications may im- geting motor functioning, expressive Croonenberghs et al., 2002b), or lower prove the neural substrate for skill ac- tuberous sclerosis or Shank3 mutations are language, and memory sponsored by levels of IL-10 which is a counter regu- quisition in ASD. also of great interest. Autism Speaks. latory molecule. There is also evidence In summary, recent findings from of immunogenetic differences (Pardo et neuroscience and molecular genetics The Glutamate Signalling System Oxytocin System al 2005, Torres et al 2006 and Ashwood are giving us the opportunity to start et al 2006) and a family history of auto- translating such data to novel therapeu- The glutamate system has recently There is also accumulating data to immune disorders in individuals with tics. In addition, one should not under- become the focus of potentially transla- suggest that oxytocin related systems ASD than in the general population estimate the potential that clinical trials tional work. Research in the Fragile X should be explored for potential thera- (Sweeten et al., 2003). There are cur- have to inform our understanding of the model of autism has demonstrated that peutics in ASD. This and related pep- rently multiple compounds that have the disorder. For example, a trial of a com- manipulating aspects of this system can tides have been documented to be in- potential to modulate the central nervous pound manipulating the glutamate sys- produce autism-like features. In addition volved in aspects of social perception system immune system in favourable tem has the potential to also inform our to the mGluR5 pathway, there are other and cognition as well as the develop- ways; however, their side effect profiles understanding of what is different in possible molecular targets within the ment of repetitive behaviors in animal vary. It is of note that nutritional supple- this system in ASD. Thus, it is now glutamate signalling system that may be models. Insel et al. suggested that ab- ments may have a role to play. For ex- imperative that these novel treatments modified by medication. Several differ- normalities in the neural pathway for ample, omega 3 fatty acids at high are tested in clinical trials and that the ent avenues of research have found im- oxytocin could explain some deficits enough doses have been noted to de- autism community supports such initia- pairments in the glutamate system in shared by autism, such as the early on- crease microglia activation in the brain tives to help advance our knowledge of people with ASD. Studies of glutamate set, high prevalence in males, genetic (ADD). Still the need for large random- neurobiological impairments and trans- levels in blood suggest that individuals loading, and neuroanatomical differ- ized trials is urgent. late this knowledge into novel effective with ASD have increased levels of gluta- ences. Although the data implicating The advancement of research prac- treatments. mate compared to typically developing oxytocin in the pathophysiology of ASD tices, from borrowing medications from controls (Rolf et al 1993, Moreno- is still limited, early work suggests other conditions, to a focus on translat- Evdokia Anagnostou, MD, is a Clini- Fuenmayor et al 1996, Aldred et al 2003, lower blood level of oxytocin in chil- ing findings from molecular genetics cian Scientist at the Bloorview Research Shinohe et al 2006). Multiple pathology dren with ASD compared to typically and neuroscience into treatment may Institute University of Toronto. Joel studies have documented aberrations in developing peers (Modahl et al 1998), finally give us therapeutic options for Bregman, MD is Executive Director of enzymes and receptor density important and aberrant maturation of this system treating core symptom domains and the Thompson Center for Autism and in glutamate related systems (Fatemi at al (Green et al 2001). Recent genetic stud- facilitating learning. The great advan- Neurodevelopmental Disorders at the 2002, Purcell et al 2001). Emerging ge- ies suggest a genetic association be- tage of such an approach is the potential University of Missouri, and is a Profes- netic findings have either implicated glu- tween the OXT receptor gene and au- of these medication treatments to facili- sor at the Department of Psychiatry/ tamate related genes or genes involved in tism (Wu et al., 2005; Ylisaukko-oja et tate progress in psychoeducational and Department of Child Health at the Uni- the structure and function of synapses al., 2006; Jacob et al., 2007) and intra- behavioural interventions. To date, be- versity of Missouri-Columbia. Latha V. important for glutamate signalling venous administration of oxytocin may havioural interventions are the mainstay Soorya, PhD, BCBA, is an Assistant (Phillipe et al, 1999, Serajee et al, 2003, facilitate aspects of social perception in of intervention programs for children Professor at the Mount Sinai School of Barnaby et al 2005, ADD). ASD (Hollander et al 2007) in ASD. with ASDs, but are faced with the prob- Medicine, and is Chief Psychologist at A few medications targeting gluta- Single dose studies of intranasal oxyto- lem of variable treatment responsive- the Seaver Autism Center. mate pathways have preliminary data to cin in both typically developed adult ness and high cost structures. Transla- Additional collaborating authors for support the notion that manipulation of volunteers and youth with ASD have tional treatment options such as oxyto- this article include: David Q. Bevers- glutamate/GABA related systems offer also supported the role of oxytocin in cin, memantine and other glutamate/ dorf, MD, Associate Professor, Depart- promise for novel therapeutics. Both a social perception/cognition and random- GABA modifying agents as well as po- ment of Radiology and Neurology, new GABA agonist and mGluR5 inhibi- ized trials of this compound are cur- tentially immunomodulators have the School of Medicine, University of Mis- tors are currently in trials. Medications rently underway. potential to modify neurobiological im- souri-Columbia; Elena H Drewel, Clini- with effects relevant to the NMDA re- pairments that may impede progress in cal Assistant Professor, Department of ceptor (a receptor involved in the gluta- Neuroinflammation behavioural interventions, and thus, Health Psychology, University of Mis- mate signalling system) also suggest may facilitate skill acquisition. For ex- souri-Columbia; David Grodberg, MD, promise (e.g. Amantadine, King et al Early neuropathology studies have ample, drugs that manipulate Gluta- Assistant Professor, Department of Psy- 2001; dextromethorphan, Woodard et al, implicated neuroinflammatory processes mate/GABA to facilitate memory and chiatry, Mount Sinai School of Medi- 2005, Welch et al 1992, Phillips et al in the brain of children with ASD. learning may be used in children mak- cine; Raghuram Prasad, Assistant Pro- 1999). Of particular interest is meman- (Vargas et al 2005). Activation of neuro- ing slow or stagnant progress in behav- fessor, Clinical Psychiatry, School of tine, a non-competitive NMDA inhibitor. glia cells can produce brain changes ioural interventions. Oxytocin has also Medicine, University of Missouri- In a series of four open label studies in- consistent with those seen in autism. been suggested as a potential treatment Columbia; Ellen Drum, BA, Clinical volving 186 children with autism, me- Reported findings (Vargas et al., 2005; for improving the social attention and Research Assistant, Bloorview Research mantine was suggested to improve irrita- Pardo et al., 2005; Zimmerman et al., motivation to potentially facilitate re- Institute, University of Toronto; Holly bility, social withdrawal, hyperactivity, 2006) suggest a dysregulated immune sponse to socialization interventions. E. Rice, MEd, Project Development inappropriate speech, stereotypy, mem- response. Many studies have docu- Both early intensive behavioral inter- Specialist, Thompson Center for Autism ory, and language (Owley et al 2006, mented either elevated levels of proin- ventions and computerized technologies and Neurodevelopmental Disorders, Chez et al 2007, Niederhofer et al 2007, flammatory cytokines such as TNF- targeting cognitive skill acquisition are University of Missouri-Columbia; and Erickson et al 2007). Current studies of alpha/IL-12, tumor necrosis factor re- potentially great models for such an Lily Schwartz, BA, Clinical Research memantine include a large randomized ceptor II, interferon - gamma among approach as such interventions facilitate Coordinator, Mount Sinai School of trial looking at core symptom domains others (Jyonouchi et al, 2005a, 2005b, the formation of new connections. The Medicine.

New Trends from page 26 lander, E. (2006) Selective serotonin reup- Palmen, S.J., van Engeland, H., Hof, P.R., Saint Louis, L.A., Cohen, I.L., London, take inhibitors in autism: a review of effi- & Schmitz, C. (2004). Neuropathological E., Brown, W.T., & Wisniewsk, T. Dobbs, D. (2005). Buried answers. The cacy and tolerability. Journal of Clinical findings in autism. Brain, 127, 2572-2583. (2010a). The neuropathology of autism: New York Times Magazine, April 24. Psychiatry, 67, 407-414. defects of neurogenesis and neuronal Pickett, J., & London, E. (2005) The neu- migration, and dysplastic changes. Acta Hazlett, H. C., Poe, M., Gerig, G., Smith, Kretzschmar, H. (2009). Brain Banking: ropathology of autism: A Review. Journal Neuropathologica, 119, 755-770. R.G., Provenzale, J., Ross, A., Gilmore, J. opportunities, challenges and meaning for of Neuropathology Experimental Neurol- & Piven, J. (2005). Magnetic resonance the future. Nature Reviews Neuroscience, ogy, 64, 925-935. Wegiel, J., Wisniewski, T., Chauhan, A., imaging and head circumference study of 10, 70-77. Chauhan, V., Kuchna, I., Nowicki, K., brain size in autism: birth through age 2 Vonsattel, J.P., DelAmaya, M.P., & Keller, Imaki, H., Wegiel, J., Ma, S.Y., Wierzba years. Archives of General Psychiatry Lord, C., Risi, S., Lambrecht, L., Cook, C.E. (2008). Twenty first century brain Bobrowicz, T., Cohen, I.L., London, E., 62:1366-1376. E.H., Leventhal, B.L., DiLavore, P.C., banking. Processing brains for research: and Brown W.T. (2010b). Type, topogra- Pickles, A., & Rutter M. (2000) The The Columbia University Methods. Acta phy, and sequelae of neuropathological Hulette, C.M. (2003) Brain Banking in autism diagnostic observation schedule- Neuropathologica, 115, 509-532. changes shaping clinical phenotype of the United States. Journal of Neuropa- generic: A standard measure of social autism. In: Autism. Oxidative stress, in- thology Experimental Neurology, 62, and communication deficits associated Wegiel, J., Kuchna, I., Nowicki, K., flammation and immune abnormalities. 715-722. with the spectrum of autism. Journal of Imaki, H., Wegiel, J., Marchi, E., Ma, Editors: Chauhan, A., Chauhan, V., and Autism Developmental Disorders, 30, S.Y., Chauhan, A., Chauhan, V., Brown, W.T. CRC Press, Taylor & Fran- Kolevzon, A., Mathewson K.A., & Hol- 205-223. Wierzba Bobrowicz, T., de Leon M., cis Group, Boca Raton. 1-34. PAGE 30 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012

Evidence from page 18 strengths and weaknesses of each article. ments such as sensory integration, con- Defining empirically supported therapies. Of the 23 studies listed, only one study ductive education, and auditory integra- Journal of Consulting and Clinical Psy- Then, in 2003, the American Speech- received a positive comment suggestive of tion (AIT), the 3rd-most cited treatment in chology, 66(1), 7-18 Language-Hearing Association (2003) any positive findings of AIT using an this particular category. weighed in on the controversy. After re- acceptable research design. The com- However, the professional community Dahlgren, S. P., & Gillberg, C. (1989). viewing the existing scientific literature ments made for the remaining 22 studies has come to the conclusion that AIT has Symptoms in the first two years of life: published on AIT, this organization adopted noted that the validity of each was consid- no credible scientific evidence to support A preliminary population study of in- a policy statement stating that there was no ered problematic due to a variety of po- the belief that such procedures result in fantile autism. European Archives of scientific evidence that AIT improves the tential methodological problems, such as any positive and measurable impact of any Psychiatry and Neurological Sciences, behavior of persons who use this treatment. small number of subjects, no control aspect of ASD. This skepticism cuts 238, 169-174 Furthermore, the policy suggests that group, or the use of unreliable survey data across researchers, educators, and profes- ASHA members could be found in viola- (AIT Institute, 2010). sional organizations. It presents an inter- Dawson, G., & Watling, R. (2000). Inter- tion of the Code of Ethics if any member esting example of how, by adhering to the ventions to facilitate auditory, visual, and chose to treat an individual with AIT. Conclusion methods of science and understanding the motor integration in autism: A review of The evaluation of AIT continued. definition of quality evidence, the profes- the evidence. Journal of Autism and De- Mudford and Cullen (2005) conducted a Autism treatment is fraught with strate- sional communities can speak with one velopmental Disorders, 30, (5), 415-421 thorough review of both the conceptual gies and tactics that vary in terms of their voice about a particular treatment in ques- underpinnings of AIT, as well as the sci- quality and evidence of effectiveness. The tion. There are many other therapies cur- Gillberg, C., Ehlers, S., Schaumann, H., entific research existing up to that date. standards of science and the scientific rently being used for which we could ap- Jakobsson, G., Dahlgren, S. O., Lindblom, They concluded that both the philosophy method are the models that should be fol- ply the same standards of evidence. Hope- R., Bagenholm, A., Tjuus, T., & Blinder, E. and logic of AIT was weak, and that the lowed when critiquing autism treatment to fully, this will be done so that in the fu- (1990). Autism under age 3 years: A clinical research base was both thin and poorly determine if a particular therapy has evi- ture, consumers will be able to select from study of 28 cases referred for autistic symp- designed, with no obvious causal relation- dence of effectiveness. In the case of AIT, a menu of treatments that all have an em- toms in infancy. Journal of Child Psychol- ship proven between AIT and any im- there is no empirical base – rooted in the pirical basis of support discovered through ogy and Psychiatry, 31, 921-934 provement in participants. standards of science - demonstrating effi- the scientific process. Employing the The most recent review of the AIT group cacy. This conclusion is made even more methods of science is a slow, plodding, Green, V. A., Pituch, K. A., Itchon, J., Choi, of therapies was conducted by Sinha, Si- compelling by the process that was used. and careful process, but we must remain A., O’Reilly M., & Sigafoos, J. (2006). love, Wheeler, and Williams (2006). These Over a period of 12 years, investigators true to it, for, ultimately, it is our best hope Internet survey of treatments used by par- authors limited their search of the research from around the world and different disci- for solving the puzzle that is autism. ents of children with autism. Research in to studies that used randomized controlled plines read the extant literature and evalu- Developmental Disabilities, 27, 70-84 trials (recognized as the preferred scientific ated that research against criteria exempli- References experimental design when testing treatment fied by good science – use of quality ex- Jacobson, J. W., Foxx, R. M., & Mulick, efficacy; e.g., Chambless & Hollon, 1998) perimental design; operational definition of AIT Institute (2010). Reviews of 28 clini- J. A. (2005). Controversial therapies for that included persons diagnosed with ASD. important terms; adequate reliability and cal studies on AIT – Auditory Integration developmental disabilities: Fad, fashion, They discovered a total of six studies that validity; and replication of results. These Training (Berard AIT). Retrieved Septem- and science in professional practice. met their inclusion criteria. Of these six, the independent researchers arrived at the same ber 20, 2010 at www.aitinstitute.org/ Lawrence Erlbaum Associates, Inc.: Mah- authors of three studies reported no benefit conclusion again and again – no compel- ait_clinical_studies.htm wah, New Jersey of AIT over the control conditions. The ling evidence exists that the use of AIT three other studies showed improvement as results in any significant improvement of American Academy of Pediatrics (2010). Mudford, O. C., & Cullen, C. (2005). Audi- defined by changing scores of the Aberrant the recipient. Furthermore, organizations Auditory integration training and facili- tory integration training: A critical review In Behaviour Checklist. However, this particu- (ASHA; AAP) that had professional inter- tated communication for autism policy J.W. Jacobson, R. M. Foxx, & J. A. Mu- lar checklist has questionable validity, so ests in this therapeutic strategy independ- statement. Retrieved September 20, 2010 lick (Eds.), Controversial therapies for the strength of this positive finding is in ently studied the research existing on AIT at http://aappolicy.aappublications.org/ developmental disabilities: Fad, fashion, question. Sinha and colleagues concluded and, finding it weak, issued formal policy cgi/content/full/pediatrics;102/2/431 and science in professional practice. that there was, at that time, no scientific statements explaining to its constituents Lawrence Erlbaum Associates, Inc.: Mah- evidence sufficiently powerful to support that the scientific evidence supporting AIT American Speech-Language-Hearing As- wah, New Jersey the belief that AIT was empirically proven was not compelling and it should not be sociation (2003). ASHA adopts AIT pol- to be effective. considered an effective therapy. icy. Retrieved September 20, 2010 at Rimland, B., & Edelson, S. E. (1995). Brief Also in 2006, the AAP once again re- However, apparently, there are still www.asha.org/Publications/ report: A pilot study of auditory integration viewed the existing literature and reexam- those who continue to use AIT. Green, leader/2003/030805/030805c.htm training in autism. Journal of Autism and ined its policy statement concerning AIT. Pituch, Itchon, Choi, O’Reilly, and Siga- Developmental Disabilities, 25, 61-70 And once again, the organization found the foos (2006) conducted an Internet survey Baranek, G. T., Foster, L. G., & Berkson, scientific research base lacking and con- of parents of children with ASD, to learn G. (1997). Sensory defensiveness in per- Samonos (2010). Retrieved September 20, firmed their initial policy against recom- what treatments exist and which ones par- sons with developmental disabilities. Oc- 2010 at www.samonas.com/index.html mending AIT. AAP updated their policy a ents admit using. The authors categorized cupational Therapy Journal of Research, second time in 2010 and left it unchanged. the treatments by type, such as medica- 17, 173-185 Sinha, Y., Silove, N., Wheeler, D., & Wil- Lastly, even some proponents of AIT tions, educational/therapy, and alternative liams, K. (2006). Auditory integration recognize the limitations of the research therapies. The results showed that almost Berard, G. (1993). Hearing equals behav- training and other sound therapies for base. After each study listed at the AIT half of the respondents indicated they iour. New Canaan, CT: Keats Publishing autism spectrum disorders: A systematic Institute website (2010), a comment from were using a “physiological” – based review. Archives of the Disabled Child, the Institute is posted, critiquing the treatment, which included specific treat- Chambless, D. L., & Hollon, S. D. (1998). 91, 1018-1022

Acting from page 25 week I had her memorize an easy song, ter classes enough to really entertain and show. I suspect children with Aspergers ironically “Tomorrow” from Annie. This not just stand behind the microphone. She may have an edge to excel in the theater out the scholarship awards. While Park was all an experiment. Although the chil- got in to the Follies, singing “Love Will world. I hope other parents will read this Playhouse played a track of one of Carol’s dren have to audition, most of them get to Keep Us Together” dancing, snapping story and it will inspire them to find their song in the background he presented a be in the show. So the night of the show, and twirling with great energy. child’s niche too. Incidentally, when framed certificate to Phoebe saying, “I the curtain opened and there she stood in When Phoebe is on stage she is like a Phoebe auditioned for Park Playhouse’s only ask that you continue your love of front of the microphone in her floral completely different child. It is as if Annie Jr., I thought to myself when I saw singing in Carols loving memory.” dress, pink sweater and headband in front someone flicks a switch and the As- all the little girls sitting and waiting their of about 70 people. The karaoke music pergers disappears. She gets immersed in turn “what have I done to my daughter?” I How Phoebe Discovered Theater started and so did Phoebe. It was loud, any role she is playing and has this ability thought I was setting her up for rejection confident and flawless. She had a huge to stay in character. After the Annie pro- and disappointment and I could have When Phoebe was about four years old smile on her face and later reported how duction ended she got the male role of never been more wrong! she would sing songs that she made up in much fun it was to be up on stage and that “Papa Ge” in Once on This Island in her head while pacing or staring at objects she wasn’t even nervous. Parents in the Saratoga Children’s Theater summer Julie Reuther is a mother of an eleven she held in her right hand. Everyone no- audience gave praise of her voice and camp program. She was so expressive and year old daughter with Aspergers. ticed once Phoebe started to sing that she performance. It was the start of something believable in this role that little children I would like to give special thanks to actually had a beautiful voice. Then when wonderful for Phoebe and we felt lucky to in the audience were afraid to approach Dr. Gina Cosgrove at the Campbell she was in second grade her elementary have found her niche. By fifth grade she her after the play for the meet and greet House, Schenectady, NY and Shirley school held auditions for a Variety Show built enough confidence to audition for the actors. She gets confidence from Arensberg, Director of Education at the where children can perform on stage. her competitive school districts’ Follies working with the other kids in the cast Park Playhouse in Albany, NY for their Phoebe seemed interested. So within a Show. By this time she had been in thea- and succeeding to the final product, the love and support. AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 31

Cybility from page 23 further away our Instructors were from these tools and applications, but also a new The Cybility Team has been generous their students, the more comfortable and role will be required for the teacher; as an in opening doors at several Foundations was able to perform the task (e.g. type a efficient our students became. Apparently, orchestrator, facilitator, inspirer, challenger for “seed money.” We anticipate long term letter, create a table or create a business we were part of the problem and were and listener. The Corporate Leaders have funding would be a blend of government card) using just the Tutorial all by them- unwittingly contributing to our ASD stu- also enabled us to incorporate concepts of (OPWDD/DDSO, DOE), Corporate and selves – without the Instructor in the room. dent’s sensory overload! ROI, Scalability, Continuous Learning, Private Donors and sales of 99¢ Tutorial To determine if the Tutorials could also We are now testing live, interactive Crowd Sourcing, and Added Value into Apps for iPads and toolkits for middle and be effective among special needs students distance learning classes using Cybility the Cybility Jobs Program. high school Special Ed Programs through- enrolled in High School Transition Pro- Tutorials and Skype onsite in our class- Cybility’s learning lab environment out the U.S. Our goal is a new facility grams, we partnered with public schools in rooms and in group and individual homes. provides an exciting opportunity to test serving 20-30 students each year by 2013. Newark and Jersey City, New Jersey and in We plan to videotape these lessons to new ways to learn and instruct. For exam- Scott and his Mom helped inspire the New York City and Westchester County. make them available to everyone 24/7 on ple, because the Tutorials contain only the Cybility Team to restructure our curriculum These field trials are ongoing. The feed- www.cybility.org in the spring of 2012. essential work tasks in an illustrated form, and method of instruction to create a new back these remarkable teachers provide is We are blessed to have a number of they enable the more advanced students to model of teaching real world job skills at invaluable. Most have been trained in Ap- very accomplished and innovative profes- become effective peer-to-peer Instructors, less cost, in less time, and to provide virtu- plied Behavioral Analysis (ABA). The goal sionals to guide the development of the thereby providing them with a well pay- ally universal access. Their needs and the is to make the field tested Cybility Micro- Cybility Business Model. This diverse ing job and to significantly reduce our lack of funds for adult ASD Jobs Programs soft Tutorials available online and in hard team represents a unique blend of three professional labor costs. has transformed the Center into a “Social copy, to teachers of Transition Programs cultures and skill sets; 1) Direct Care Pro- Similarly, we have invited several of Enterprise,” a hybrid non- and for-profit for special needs students, everywhere. viders 2) Special Needs Educators, and 3) our student’s moms with office skills to business model, in order to achieve finan- In our learning lab, when we observed Corporate leaders, which combine to create volunteer a few hours a week to learn how cial viability and create life sustaining jobs that Scott and other ASD students pre- Cybility’s unique approach to job develop- to teach students using our Tutorials and for our neighbors-in-need. We believe Cy- ferred to learn from their computer, rather ment. View mini bios of the Cybility team Skype distance learning methods. bility is a model that is scalable worldwide than their Instructor, we installed web- at www.cybility.org/about-us.html. We would welcome inquiries from using today’s technology for a fraction of cams and Skype software so the Instructor These Corporate Leaders have also edu- interested parent’s groups who would like the cost of traditional classroom instruction. could teach through the screen. This cated us in identifying which job skills are to start their own Cybility Learning Jobs To learn more about this pioneering “assisted technology” enabled Scott and required to survive in a hyper-flat, hyper- Centers. Please contact Don Fitch by program and how you can help, please our non- and minimally verbal students to connected world where more and more jobs email at [email protected]. visit www.cybility.org. communicate, thereby opening up their are automated, digitized or outsourced. To After six months in program, five of our world to learn and work through the com- prepare our students for these future jobs, we seven students are earning $8/hr part-time References puter (see Skype chart below). have chosen to focus on “white collar,” rou- for conducting internet searches, data entry, A three month research study among tine skills jobs that utilize Google, Wikipedia creating special occasion cards and as Skype A New Culture of Learning - D. Thomas eleven students conducted at our Center and other databases to perform many stan- Technicians and Peer-to-Peer Instructors and J.S. Brown 2011 found all were able to complete five office dardized repetitive tasks, such as Number Our goal is for graduates to earn at work tasks in significantly less time and Crunching, Data Entry, Charts, PowerPoint least $3,000 per year for an estimated life- That Used to be US - T.L. Freedman and with fewer errors than our 1:1, face-to- Production, Internet Research, Sales Pros- time earnings total of $120,000. At a per M. Mandelbaum, 2011 face instruction. We coined the term pecting, and of course Peer-to-Peer Teaching. student investment of $10,000, about half “Cybility” (Cyber + Ability) to describe We believe that, not only will a new the cost of a Day Program, the breakeven Applied Behavioral Analysis - Baer, Wolf this special talent. We concluded that the classroom model be required to provide point would be a little over three years. and Risley, 1968 and Heward, 2005

Regressive from page 7 ent in boys who did not experience a re- ing brain changes associated with autism, Barnett, Aaron Lee, Tony J. Simon, Sally gression. Girls with autism, regardless of the authors note. In the current study, not Rogers and Sally Ozonoff of the UC Davis The MRIs were carried out on study autism onset status, also did not show all boys with regression demonstrate the MIND Institute and the Department of participants during natural, nighttime sleep abnormal brain growth. The study find- precocious brain growth. The investigative Psychiatry and Behavioral Sciences in the using protocols developed specifically for ings suggest that abnormalities in overall team also continues efforts to define the UC Davis School of Medicine; and Mi- the Autism Phenome Project by Nordahl. brain growth are specific to male children underlying brain pathology in children with chael H. Buonocore of the Department of “Obtaining MRI scans in 3-year-old with the regressive type of autism, and early onset autism and in girls with autism. Radiology, UC Davis School of Medicine. children without the use of sedation may that rapid brain growth may be a risk fac- “It is not clear how many different The study was funded by grants from seem quite challenging. But, by working tor for regression, the researchers said. types of autism will be identified,” Amaral the National Institute of Mental Health closely with the parents, we actually were While brain size was clearly larger at said. “The purpose of defining different and the University of California, Davis successful more than 85 percent of the age 3, the study also determined when the types of autism is to more effectively study Medical Investigation of Neurodevelop- time. Patience on the part of everyone and precocious growth began, by examining the cause of each type and eventually de- mental Disorders (MIND) Institute. the dedication of the families was critical records of head circumference that pro- termine effective preventative measures At the UC Davis MIND Institute, world- for our success,” Nordahl said. vides a reasonable estimate of brain size and better, individualized treatments. This renowned scientists engage in research to The study found that accelerated head in young children. These analyses clearly is a first step in defining autism subtypes find improved treatments as well as the growth and brain enlargement was consis- indicated that brain growth diverged from based on the data from the Autism Phe- causes and cures for autism, attention- tently observed only in the subset of chil- normal at around 4 to 6 months of age. nome Project, but it certainly will not be deficit hyperactivity disorder, fragile X dren diagnosed with regressive autism. This is of particular interest, because the last. There are already indications that syndrome, Tourette syndrome and other Specifically, total brain volume in 3-year- many families believe that the trigger that other subtypes of autism will be more neurodevelopmental disorders. Advances old males with regressive autism was led to their child’s regression took place closely associated with immunological in neuroscience, molecular biology, genet- more than 6 percent larger than that of age close to the time that the regression hap- differences or genetic alterations.” ics, pharmacology and behavioral sciences -matched typically developing peers. pened. But the data reported in this paper are making inroads into a better under- Twenty-two percent of boys with regres- indicate that the process leading to the The study’s other authors are Nicholas standing of brain function. The UC Davis sive autism, as opposed to 5 percent of enlarged brain, which presumably also is Lange of the Department of Psychiatry MIND Institute draws from these and other boys without regressive autism, had associated with the onset of autism, and Biostatistics at Harvard University disciplines to conduct collaborative, mul- enlarged brains, the study found. started when the child was a newborn. Schools of Medicine and Public Health tidisciplinary research. For more informa- Changes in brain size were not appar- Much remains to be elucidated regard- McLean Hospital; Deana D. Li, Lou Ann tion, visit mindinstitute.ucdavis.edu. PAGE 32 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012

Folic Acid from page 11 DNA within neuronally expressed genes mans, reduced protein levels of FMRP Laboratory of Structural Neurobiology that can undergo methylation in response to cause Fragile X syndrome, the most com- is to identify the causative factors re- gene expression during gestational devel- epigenetic agents such as FA. mon known cause of inherited intellectual sponsible for children's neurodevelop- opment. The development of a fetus is con- Our preliminary results with human or developmental disability as well as the mental disorders, understand the mo- trolled by precise regulation of gene ex- lymphoblastoid cells in culture have re- most common known single-gene cause of lecular mechanisms involved, and ulti- pression. Certain genes are turned on and vealed that FA supplementation causes autism. These results provide evidence of mately develop blood-based bio- off at particular time intervals, and any widespread changes in gene expression, as abnormal gene expression in response to markers for early identification and disruption of such highly orchestrated gene measured by expression microarrays and excessive FA supplementation due to cyto- prevention. Currently, we are working expression will likely have persistent dele- further confirmed by Western blot analyses sine residue hypermethylation. Studies of on three different disorders: autism, terious effects. In a fertilized egg, global [M.A. Junaid, S. Kuizon, J. Cardona, T. dietary FA supplementation in female late-infantile neuronal ceroid lipofusci- DNA demethylation, followed by remethy- Azher, N. Murakami, R.K. Pullarkat and C57BL/6J mice are underway to determine nosis (LINCL), and ataxia telangiecta- lation, occurs to reprogram the maternal W.T. Brown. (2011). Folic acid supple- whether such supplementation modifies sia (A-T). and paternal genomes for efficient regula- mentation dysregulates gene expression in the behavior of the progeny. tion of gene expression. A number of im- lymphoblastoid cells─implications in nu- Mohammed Junaid, PhD, is the Head printed genes with the potential to undergo trition. Biochem. Biophys. Res. Comm. 412 About the Laboratory of of the Laboratory of Structural Neurobiol- hypermethylation at CpG islands are ex- (4): 688-692]. A prominent gene whose Structural Neurobiology ogy at the New York State Institute for pressed in human brain in addition to large expression is inhibited by FA is FMR1, Basic Research in Developmental Dis- regions of partially methylated genomic which encodes the protein FMRP. In hu- The major research focus of the abilities in Staten Island, NY.

Planning from page 19 they are adequately funded for quality • Special Needs Alliance: other relatives leave their assets after lifetime care and quality of life. www.specialneedsalliance.com death may greatly affect the quality of history, etc., will be invaluable to future (A resource to help identify local life for their family member with spe- caregivers… and the child. Resources for Parents legal counsel with expertise in special cial needs. needs) Surround yourself with a team of knowl- There are many government and non- Article prepared by Northwestern edgeable professionals who have experi- profit agencies to contact for more infor- • National Care Advisors: Mutual with the cooperation of Stephen ence working with families with special mation on planning for the financial fu- www.nationalcareadvisors.com A. Ehrens. Stephen A. Ehrens is a Fi- needs - Core members of this team should ture for dependents with special needs and (Consulting firm that provides quality nancial Advisor with Northwestern Mu- include an attorney, a social worker and a related issues. Following are some start- of life planning necessary to meet the tual the marketing name for The financial professional. Together this group ing points for identifying local contacts: challenges of living with special Northwestern Mutual Life Insurance can help you manage the legal, govern- needs) Company (NM), Milwaukee, Wisconsin, ment benefits, and financial solutions for • The Arc of the United States: and its subsidiaries. Stephen A. Ehrens your loved one with special needs. www.thearc.org Whether a family has substantial is based in Fairfield, CT. To contact means or few assets, a young child or Steve, please call 203-256-2162, e-mail Provide funding for quality of life for a • National Dissemination Center for adult child with disabilities, planning him at [email protected] or lifetime - Special needs trusts should be Children with Disabilities: for the financial future of a loved one is visit his website address at regularly checked to make certain that www.nichcy.org critically important. How parents and www.stephenehrens.com.

Education from page 24 sation and yelled out, “Is she trying to The Ridge School Opens Its Doors for 7 years. We run a hands-on program take away my suspension? It’s mine and I and incorporate a lot of social skills daily. continue services in third grade because earned it, she can’t take it back!” The On January 18, 2005 we opened our Our curriculum includes English, Social of his diagnosis of Asperger’s Syndrome, rest of the year he had no transportation doors with 4 students. JM finally had a Studies, Science, and Math. Our lessons the school psychologist became upset and to or from school so we drove him 17 placement and was starting to make are reinforced by students building ex- told us that JM could only have the diag- miles each way to and from school each friends. In no time, four more students traordinary projects. It is wonderful to see nosis of “other health impaired.” day. were enrolled - all either already diag- them working as a team creating an inven- At the end of the school year the Com- In June we had his CSE meeting. I was nosed with Asperger’s, high functioning tive world within this new school. mittee on Special Education (CSE) chair- informed he was “regressing” in school. Autism, or on the road to such a diagnosis. Our students and their families have person and the psychologist recom- My wife and I were told the district did Suddenly my wife and I did not feel so traveled to New York City for Broadway, mended out of the blue that JM be re- not have a placement for him and that he alone. We met parents with similar situa- Colonial Williamsburg, gone to see whale moved from his home school, placed in a would be placed on home instruction until tions and similar diagnoses. All this time watching, visited Plymouth Plantation, different school in the district in a self- an appropriate program could be found. the district led us to believe we were the and seen many historic sites in the Hud- contained class of 15 students. This was On July 1st, the entire Special Educa- only family in the district with a child with son Valley and Philadelphia. We have his third school placement in 14 months; tion Department resigned, with the excep- this disability. It soon became apparent been invited on research vessels studying different building, different students, and tion of one individual who was hoping to that there was a large population of stu- the effects of pollution on the shell fish different staff. become the new head chairperson. dents and families who were being ig- and fishing industry on Long Island The teacher for third grade was won- Throughout the summer and fall, we vis- nored, their children disenfranchised, Sound. We go on a trip each week. These derful. After several months she called my ited at least 20 out-of-district placements, home instruction was the only education trips support our socialization skills, en- wife and I in for a conference. She in- most of which were at least 45 miles one available, and all families felt they were courage us to look around at the different formed us that she felt JM was not prop- way from home. All these programs re- alone in this path. Some were on home jobs we see along the way, and support erly placed because 10 of her students jected him as he was considerably higher instruction, some home schooled, and oth- the academics in the classroom. We also were emotionally disturbed and he did not functioning than the student population ers staying home because parents could study how to use the public transportation fit the profile of the rest of her students. they served, and in several cases he would not get their child out the door. Many of that is available to us. Supporting our edu- He was also picking up and mimicking “age out” in less than a year. these students we later realized were bul- cational program through vocationally the behaviors of the other students. When September came along, the dis- lied in school and on transportation. oriented trips using social skills and pub- Unfortunately the teacher was retiring trict was not able to find an appropriate Within three weeks, we had 14 stu- lic transportation provides the visual and after 44 years. We again started looking at placement, a home instructor, or a new dents apply from our local school district “hands on” experiences these students the private schools in the area and were CSE chair person. In November the dis- alone. We were told JM was the “only” relate to. not able to find a suitable placement. Ac- trict hired a woman who was given the student with this Asperger’s Syndrome, To date we have students in college cordingly, we left him with the same class title Director of Pupil Personnel. Five and we soon found out that there were placements that keep in touch with us and and a new teacher. days after she was hired she invited my many students with this diagnosis; some return when they can to visit. I tell them, Fourth grade started and JM went back wife and I in for a meeting with her. We were doing ok, others were out of school “Once a Ridge School Kid, always a to school. By 10:00 am, we would receive so hoped she would have a solution for us, altogether. We were made to feel so guilty Ridge School Kid.” a call that he was having a rough day and instead she informed us that she was told for this diagnosis and for requesting the It is my hope that the readers of this would to be picked up from school. Next to be prepared as we were going to be education and services he deserved. Now story will realize our students are the in- he started to get suspended. “her worst nightmare.” After that meeting we find out we are NOT alone!! The ventors, the free thinkers, and most of all I remember one morning in which he we left determined to create The Ridge names and school districts are different, an important part of the future of our was suspended where the principal called School. We had already visited programs but the stories are almost identical. These country and our world. to tell me he was to stay home because he in 4 counties, none of which were appro- families have been out there all along. For more information, please visit was suspended. JM overheard the conver- priate for our child. The Ridge School has now been around www.ridgeschool.org. AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 33

Fear from page 12 Taken together, these findings highlight with similar fear and anxiety symptoms to Evans, D.W., Canavera, K., Kleinpeter, the complexity of assessing fear in chil- those of their caregivers (Kendall, Ellsas, F.L., Maccubbin, E. & Taga, K. (2005). amount of fear (i.e., none, some, much) to dren with an ASD and suggest that a more Kane, Kim, Kortlander, Ronan, et al., The fears, phobias and anxieties of chil- the same stimuli that were viewed by the individualized assessment technique may 1992; Silverman, Cerny, & Nelles, 1988; dren with autism spectrum disorders and children. The photographs were presented be needed in identifying fear responses. Windheuser, 1977). down syndrome: Comparisons with devel- gradually, such that the opacity of each, Results were interpreted that children However, additional recent research opmental and chronologically age from absent to normal, increased in one- with PDD-NOS or Asperger’s Syndrome from the Institute suggests that caregiver’s matched children. Child Psychiatry and second intervals to attenuate possible star- may be more responsive than children report of their child’s fear and caregiver’s Human Development, 36, 3-26. Doi: tle responses. That is, the visual stimulus with Autistic Disorder to non-invasive report of their own fears were not related. 10.1007/s10578004-3619-x was gradually faded in to full view. If the assessment procedures involving pictorial In other words, unlike typically develop- child showed a fear response, the photo- representations and measurement of the ing children, children with an ASD are Kendall, P.C., Ellsas, T.E., Kane, M.T., graph was terminated and after a pause presence of typical fear responses. These not modeling fear reactions (and appropri- Kim, R.S., Kortlander, Ronan, K.R… the next photograph was presented. Be- results underscore the difficulty in making ate coping responses) from their caregiv- Siqueland L. (1992). Anxiety Disorders in haviors associated with fear were system- conclusions based on samples of children ers. This finding is understandable in light Youth. Cognitive Behavioral Interven- atically observed as the children viewed with an “ASD” (i.e. generic diagnostic of the pervasive deficits in many social tions. Boston: Allyn & Bacon. each photograph (i.e., verbal complaints, descriptor). When considering the assess- communication skills, such as eye contact, looking away, body rigidity, fearful facial ment and presentation of fear in children imitation, and the use and understanding Muris, P., Steerneman, P., Merckelbach, expression) as well as approach and posi- there are meaningful distinctions between of gestures and facial expressions, which H., Holdrinet, I. & Meesters, C. (1998). tive behaviors. Notably, as the research the specific diagnostic groups that com- are characteristic of individuals with an Comorbid anxiety symptoms in children literature does not present accepted pa- prise the autism spectrum disorders. ASD. These skills are key factors in the with pervasive developmental disorders. rameters for assessing fear in children With respect to correspondence be- ability to learn about emotions from oth- Journal of Anxiety Disorders, 12(4), 387- with an ASD, the current procedure was tween caregiver report and children’s reac- ers. More specifically, a lack of social 393. doi: 10.1016/S0887-6185(98)00022-X chosen to allow observation of the com- tions, overall correspondence was poor, comprehension skills may hinder the de- mon fear responses expressed by typically with overlap on only 63% of photographs. velopment of appropriate fears (e.g. Ollendick, T.H., King, N.J. & Muris, P. developing children. Variation was seen among the three diag- strangers, harm) and spark the develop- (2002). Fears and phobias in children: Phe- During the assessment, many children nostic groups that comprise the autism ment of socially inappropriate fears (i.e. nomenology, epidemiology, and aetiology. displayed positive affect (e.g., smiling), spectrum disorders. Specifically, average either in content or intensity) – which, Child and Adolescent MentalHealth, 7(3), indicating the utility of many of the pho- correspondence between caregivers and described above, is a pattern often noted 98-106. doi: 10.1111/1475-5388.00019 tographs to generate an emotional re- their children with PDD-NOS was 78%, in the literature. sponse from the children. Children also whereas correspondence was 48% for chil- These results highlight the importance Rachman, S. (1977). The conditioning attended to the photographs, often label- dren with Asperger’s Syndrome and 59% of direct instruction for teaching coping theory of fear acquisition: A critical ex- ing what they were presented on the for children with Autistic Disorder. Of the skills and emotion recognition, interpreta- amination. Behaviour Research and monitor (e.g., “A car!”). In contrast, the children who did display typical fear re- tion, expression, and regulation as part of Therapy, 15, 375 – 387. doi: data showed a limited utility of the photo- sponses, an even lower correspondence a comprehensive service model for chil- 10.1016/00057967(77)90041-9 graphs to evoke typical fear responses. was seen with caregiver report, suggesting dren with an ASD. Children must be di- The majority (i.e., 67%) of children with that, as would be expected, caregivers rectly taught the social coping skills Rodgers, J., Riby, D.M., Janes, E., Con- Autistic Disorder did not demonstrate a have difficulty interpreting the emotions needed to appropriately regulate and miti- nolly, B., & McConachie, H. (2011). typical fear response to any of the photo- and behaviors displayed by their child, gate their expression of fear. Anxiety and repetitive behaviours in au- graphs, whereas 100% of the children that illustrating the complexity of the relation- tism spectrum disorders and Williams did demonstrate typical fear responses had ships between display of affect, fear re- References syndrome: A cross-syndrome comparison. a diagnosis of PDD-NOS or Asperger’s sponse, and caregiver interpretation. Journal of Autism and Developmental Syndrome. However, to fully interpret Cavalari, R.N.S., & Romanczyk, R.G. Disorders. Advance online publication. these results it is important to consider the Caregiver Modeling – Implications for (2012). Supervision of children with an doi: 10.1007/s10803-011-1225-x children’s ability to demonstrate a typical Teaching Social-Emotional Skills autism spectrum disorder in the context of fear response. As many children with an unintentional injury. Research in Autism Silverman, W.K., Cerny J.A., & Nelles, ASD evince difficulties with affect and Social learning models have been used Spectrum Disorders, 6, 618-627. doi: W.B. (1988). The familial influence in may be less likely to display emotions in a to explain the development of fear in typi- 10.1016/j.rasd.2011.09.012 anxiety disorders: Studies on the offspring typical manner, the fear-related responses cally developing children (Dubi, et al., of patients with anxiety disorders. In B.B. measured in this assessment may not be 2008, Gerull & Rapee, 2002; Rachman, Dubi, K, Rapee, R.M., Emerton, J.L., & Lahey & A.E. Kazdin (Eds.), Advances in characteristic of children with an ASD. 1977). In fact, much research has shown Schneirling, C.A. (2008). Maternal model- clinical child psychology (Vol. 11, pp. For example, research suggests that indi- that typically developing children quickly ing and the acquisition of fear and avoid- 223 – 248). New York: Plenium Press. viduals with an ASD are generally less learn to fear various objects and situations ance in toddlers: Influence of stimulus pre- expressive and often show neutral or idio- via their mother’s reaction (Dubi, Rapee, paredness and child temperament. Journal Windheuser, H.J. (1977). Anxious mothers syncratic expressions (Loveland, Tunali- Emerton & Schniering, 2008). Many typi- of Abnormal Child Psychology, 36, 499 – as models for coping with anxiety. Behav- Kotoski, Pearson, & Brelsford, 1994). cally developing children also present 512. doi:10.1007/s10802-007-9195-3 ior Analysis and Modification, 2, 39 – 58.

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 more information, visit our website www.FAAHFA.com or 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]

Upcoming Meeting Dates: 2012 - 1/22, 2/26, 3/18, 4/22, 5/20, 6/10

Westchester Arc The Gleeson-Israel Gateway Center 265 Saw Mill River Road (Route 9A) Hawthorne, NY 10532 PAGE 34 visit our website: www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2012

Immune Link from page 6 are murky. But more and more studies are In September, researchers took a Foundation. You may view the original implicating cytokines, the ubiquitous sig- look at the immune picture earlier in article, written by Virginia Hughes and de Water reported some clues in a study naling molecules of the immune system. development by measuring cytokines published 15 December, 2011, online at published 18 October in Translational A flurry of neuroscience research in in amniotic fluid. Drawing from hun- https://sfari.org/news-and-opinion/ Psychiatry2. Her team showed that moth- the past couple of years has overturned dreds of samples stored in a large news/2011/studies-of-early-development- ers carrying certain common variants of the dogma that the nervous and immune Danish biobank, the researchers re- reveal-immune-link-to-autism. This mate- the MET gene have an abnormally high systems are generally independent. In- ported that pregnant women whose rial is reproduced with the permission of risk of producing these autism-linked stead, many teams have shown that there babies develop autism have elevated sfari.org. autoantibodies. is a two-way cross talk between them. levels of a chemokine — a particular One of MET’s many functions is to help Cytokines, for example, are produced class of cytokine — called MCP-1 in References suppress a pregnant woman’s immune sys- by brain cells in response to infection, but amniotic fluid6. tem so that it does not reject her fetus, they also help neural stem cells differenti- This could mean that an altered im- 1) Braunschweig D. et al. J. Autism Dev. whose DNA is half foreign. Van de Water’s ate and mature neurons change the mune state from the beginning of life Disord. Epub ahead of print (2011) PubMed study found that women carrying these strength of their connections3. causes autism — but that’s only one of - www.ncbi.nlm.nih.gov/pubmed/22012245 common variants — in which there is a “There’s a growing body of evidence many possibilities. cytosine nucleotide in a specific part of the that says immune processes are not sim- “We don’t have sufficient evidence 2) Heuer L. et al. Transl. Psychiatry Epub MET gene — produce less MET protein ply defense processes, but play a role in that this is a causal relationship,” says ahead of print (2011) Abstract - and less interleukin 10, a type of cytokine, the plasticity and connectivity of the brain lead investigator Morsi Abdallah, a re- www.nature.com/tp/journal/v1/n10/full/ in their blood. Both of these are molecular during development,” notes Owen Ren- searcher at the Statens Serum Institute in tp201148a.html signs of the immune system in overdrive. nert, head of developmental and clinical Copenhagen. “It could reflect some other Pregnant women who carry these MET genomics at the National Institute of distortion going on in the fetus or stem- 3) McAllister A.K. and J. Van de Wa- variants may be primed for an excessive Child Health and Human Development. ming from the mother.” ter Neuron 64, 9-12 (2009) PubMed - immune response if, for example, they In September, Rennert reported an All of these researchers agree that www.ncbi.nlm.nih.gov/pubmed/19840540 acquire an infection, Van de Water says. autism-immune link using an unusual pinning down biological mechanisms Epidemiological studies over many dec- computational model4. With data from a will require cell and animal models, in 4) Ziats M.N. and O.M. Rennert PLoS ades have shown that flu epidemics trig- freely available atlas of gene expression, which researchers can measure the ef- ONE 6, e24691 (2011) Full Text - ger a spike in the number of babies who his team showed that 32 autism candidate fects of specific tweaks to the immune www.plosone.org/article/info%3Adoi% go on to get autism or schizophrenia. genes are highly expressed in the develop- system. 2F10.1371%2Fjournal.pone.0024691 “This genetic susceptibility sets you up ing human brain. Pathway analyses of “Sorting out cause and effect — we’re for the wrong event at the wrong time,” these genes showed that many are in- a ways away from that,” Van de Water 5) Vargas D.L. et al. Ann. Neurol. 57, 67-81 Van de Water says. volved with immune system regulation says. “But each piece of information that (2005) PubMed - www.ncbi.nlm.nih.gov/ and, specifically, cytokine signaling. we get on which systems are dysregulated sites/pubmed/15546155 Cytokine Storms This fits with studies of blood, cerebro- takes us that much closer to figuring out spinal fluid and postmortem brain samples the commonalities.” 6) Abdallah M.W. et al. Brain Beh. Im- Explanations of how maternal antibod- that have turned up abnormal cytokine mun. Epub ahead of print (2011) PubMed - ies may push the fetal brain toward autism levels in individuals with autism5. This article is property of the Simons www.ncbi.nlm.nih.gov/pubmed/21933705

Learning Style from page 20 learning, they stated their preferences for 2010). This difference was apparent in four from instruction that was matched to their learning through a variety of different of the 25 preferences tested. Data revealed particular style of learning. As educators traditional level of significance (.05) modalities which include tactile, visual, students with autism, when compared to continue to search for more effective teach- would have been a consideration. Stu- auditory and kinesthetic. their typical peers, reported a significant ing strategies for students with autism to dents with autism indicated a preference There are commonalities among the preference for learning in an environment address their academic, social, and behav- for a more structured environment. emotional needs of students with autism as which included bright light, and required ioral achievements, a consideration of stu- Student preferences for varied socio- well. They reported a strong need for them to listen to the teacher. In compari- dents’ preferred learning styles is essential. logical learning opportunities were also structure and authority and felt they were son, the responses of their typical peers Students with autism should feel increas- examined. Students with autism report motivated by others. This analysis also were fairly evenly distributed across re- ingly more comfortable in their general that they learned best in a variety of social showed that students with autism were sponses in choosing low, no preference or education classrooms when their emotional, settings. While the social makeup of a more multi-task persistent than single-task bright light (18, 23, and 19 students re- sociological, psychological, physiological, classroom is usually teacher directed, peer persistent, desiring frequent breaks during spectively). Also, 22% of their typical and environmental needs are met. Educa- collaboration and interaction in one-to- work periods rather than sticking to one peers reported no preference for learning in tors must develop proficiency in carefully one and small group settings were impor- task until completion. an auditory manner, while no students with evaluating profiles of ability for children tant to these students with autism as was Students with autism see themselves as autism chose “no preference” as their re- with autism as their unique strengths and working with authoritative adults in a more global than analytical learners. sponse. They also differed significantly in weaknesses may not always be supported variety of different ways. Global thinkers prefer to develop an un- that they preferred to learn with an authori- within the general education classroom. Physiological elements that influence derstanding of the concept and then de- tative adult as opposed to their typical With more data to support student learning learning include perceptual elements such velop the details. The data analyzed in this peers who, although they also” preferred” preferences, the inclusion process can be as material being presented in a visual, study revealed that students with autism to learn with an authoritative adult, 30% specifically tailored to meet student needs auditory or tactual manner, time of day have commonalities in learning-style pref- said they had “no preference” whereas and support success in the classroom when (morning , noon or afternoon), intake erences. These commonalities have impli- only 4% of students with autism chose this used for instructional planning and teacher (snacking or not snacking while working), cations for students and teachers in the response. Students with autism also felt training. The results of this study offer valu- and opportunities for mobility during inclusive environment of a general educa- themselves to be impulsive (56% as op- able insight into the learning styles of stu- learning, such as taking short breaks. This tion classroom as well as the more special- posed to 20% of typical peers) rather than dents with autism, enabling teachers to cre- study revealed that students with autism ized, smaller group classroom. When stu- reflective students, while their typical ate classrooms which are welcoming and preferred not to snack while learning. dents and teachers alike have a deep un- peers made choices which indicated they enriching, in turn leading to a more com- While fewer than expected students ex- derstanding of how students learn best and felt they were more reflective (72% as fortable and successful school experience. pressed preferences for learning at spe- are willing to make simple changes to opposed to 35% of students with autism). cific times of the day, those that did ex- their everyday classrooms or routines to When educators understand that all stu- Dr. Friedlander is a special education press preferences stated they learned best accommodate student preference, more dents have individual needs and preferred inclusion teacher in elementary educa- in the afternoon. They also expressed active and engaged learning can occur. learning styles they can create learning tion in Ridgefield, Connecticut. She is preferences for material to be presented to In addition, this study found that stu- environments that ensure maximum suc- currently working on a book about learn- them through various perceptual modali- dents with autism prefer to learn in ways cess. The learning-style researchers have ing styles for teachers and their stu- ties. Although students with autism are that are sometimes significantly different found that students who are considered to dents with autism. She can be contacted often offered visual supports for their from their typical peers (Friedlander, be high-risk have benefited significantly at [email protected].

mRNA from page 25 The good news is that if this hypothe- therapeutic measures based on non- searcher and pioneer in the field of autism sis proves to be true, technology could coding RNA research are, at best, many and Asperger's Disorder and co-author of The hypothesis proposed here is that possibly be developed to correct or years away. the official diagnostic criteria in the DSM the symptoms of autism (be they severe counter the abnormal timing and place- (Diagnostic and Statistical Manual of or mild) are due to an abnormal rate and ment instructions contained in the non- Edward R. Ritvo, MD is Professor Mental Disorders). Much of what is sequencing of brain development which coding RNA. Such technology could Emeritus at the UCLA School of Medi- known about these disorders today is is due to abnormal non-coding RNA prevent and/or treat AD. However, it cine. Edward R. Ritvo, MD is an interna- based on his painstaking research and instructions. must be stressed that any preventive or tionally recognized medical expert, re- groundbreaking discoveries. AUTISM SPECTRUM NEWS ~ WINTER 2012 visit our website: www.mhnews-autism.org PAGE 35

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