UTISM PECTRUM EWS TM A YOUR TRUSTEDS SOURCE OF SCIENCE-BASED AUTISM EDUCATION,N WINTER 2015 INFORMATION, ADVOCACY, AND COMMUNITY RESOURCES VOL. 7 NO. 3 The Importance of Scientific Research

The Future of Autism Genetics Should Learn From Its Past

By Michael Ronemus, PhD tribution of de novo mutations of different SFARI.org categories to autism. (These categories in- clude loss-of-function mutations — which prevent full protein production — and ast month in November of 2014, missense variants, which have a less clear my colleagues and I published two effect on protein function3.) There is little large studies that sequenced the doubt that this approach remains the most genes or exomes of thousands of powerful weapon in today’s arsenal —not Lfamilies with a history of autism1,2. These just for autism spectrum disorders, but oth- studies identified several dozen “high-con- er neuropsychiatric and sporadic genetic fidence” autism genes that show sponta- disorders as well. neous, harmful mutations in multiple af- But we still cannot pinpoint the causal fected (and unrelated) individuals. mutations for many cases of autism be- Picking the ripest of these low-hanging cause the genomic background noise re- fruits — through ‘brute-force’ genomics mains high: More than half of even the and discovery of spontaneous, or de novo, most damaging single hits to a protein are mutations — has brought us much closer present in an individual by chance and are to understanding the genetics of autism not linked to autism. Given this, it is not than we were just five years ago. But to always clear what to tell clinicians and ge- optimize what we can learn, our studies netic counselors who are on the front line must be informed by what we have al- and wish to make use of these data. ready discovered. We certainly need many So what is the future of family-based more sequences from more families with gan on cohorts of people with autism, we perhaps even most, using the broadest cri- genomic studies of autism, with detection autism. But these sequences need to be of hoped — and expected — to discover teria for an autism gene. of de novo mutations as the central focus? the right kind. many, if not most, of the underlying genes. We can now put forth a statistically When large-scale genomic analysis be- We have undoubtedly found many, and sound estimate of the overall genetic con- see Genetics on page 20

Evidence-Based Reading Intervention Practices for Students with ASD

By Tamara Sterling, MS, CCC-SLP, TSSLD The research is evolving and shows that sion (Lanter & Watson, 2008). Children sense of accomplishment and motivation Speech-Language Pathologist there are proven methods of reading inter- with hyperlexia are often diagnosed with in learning to read (Broun 2004 as cited in ventions for students with ASD. This paper ASD or may present with characteristics Spector 2010). It is a more accessible start- will explore the evidence-based practices of ASD (Nation, 1999). On the other hand, ing point intervention than phonics-based eading proficiency is a skill that for reading intervention (sight word and decoding words can also be challenging to approaches for students with ASD who is necessary to function in so- reading comprehension instruction) in stu- students with ASD. Nation et al., (2006) have challenges with abstract, audito- ciety. Yet, low reading scores dents with ASD. found that decoding impairment was more ry-based concepts (Broun & Oelwein, during the school years contin- The reading profile of students with prevalent in students with ASD than in the 2007 as cited in Spector 2010). Reading Rue to be a persistent trend in the U.S. The ASD is heterogeneous (Nation, Clarke, general population. programs usually incorporate sight word Annie E. Casey Foundation (2014) reports Wright, & Williams, 2006). It is the gen- Historically, students with ASD are dis- instruction for high utility words that are that 66% of U.S. students are not reading eral consensus that students with ASD are qualified from reading programs because not decodable. Sight word instruction ben- proficiently and are not prepared for future great readers because of their ability to of erroneous beliefs that they cannot cogni- efits students with ASD because its mas- success. The No Child Left Behind Act of decode due to their unique rote abilities. tively access the curriculum. Today, federal tery enables them to execute functional 2001 and The Individual with Disabilities Caution should be taken with this gener- laws mandate schools to use EBP to teach tasks such as reading grocery lists, menu Education Act (IDEA) of 2004 mandate alization because of the varying degrees reading to all students. Evidence-based items, directions, recipes, and environmen- high academic standard opportunities and of cognitive and linguistic skills seen in reading interventions assist students with tal signs (Browder & Xin, 1998 as cited in evidence-based practice (EBP) instruction students with ASD and because word read- ASD to become proficient readers. The Spector 2010). for all student – including students with au- ing does not always indicate that meaning current best evidence, research-proven Spector (2010) examined the evidence tism spectrum disorders (ASD). Students is being stemmed from the printed text. reading instruction for students with ASD, on sight word instruction as a means of with ASD are increasingly being incor- When students’ decoding skills far ex- that should guide clinical and academic teaching student with ASD to read printed porated in general education classrooms ceed their reading comprehension skills, practice, are sight word instruction and words. The results showed the following where there is a strong emphasis on read- they are described as having hyperlexia. reading comprehension intervention. as research-proven reading instruction for ing proficiency (Lanter & Watson, 2008). These students have a compulsive preoc- students with ASD: Visual supports – Stu- Reading instruction has been given rela- cupation with reading and an early onset Sight Word Instruction - Sight word instruc- dents were required to match food logos, tively little focus in EBP analysis with re- of precocious word reading skill that is tion is beneficial for students with ASD

gard to students with ASD (Spector 2011). unparalleled to their reading comprehen- (Spector 2010). It is useful in fostering a see Reading on page 21

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The Importance of Scientific Research

1 The Future of Autism Genetics Should Learn From Its Past 13 Paving the Road to Success

1 Evidence-Based Reading Intervention Practices for Students with ASD 14 Autism Spectrum News Honors Leaders at NYC Event

4 It Takes Brains to Solve Autism 15 Photo Gallery of Attendees at Our Leadership Event

6 Changes in Scores of Genes Contribute to Autism Risk 16 Autism a Major Theme at YAI 2015 Conference in May

8 The Daniel Jordan Fiddle Foundation Announces New Initiatives 17 Evaluating the Ability of Learners to Work in Small Groups

10 President Obama Signs ABLE Act - A Major Victory 18 Understanding Treatment Effect Scores in Behavioral Therapy Research

11 A Look at Classroom Pivotal Response Teaching 19 A Boy and His Dog - A Mom’s View

12 Autism and Science: A View From Across the Neural Divide

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It Takes Brains to Solve Autism

By Carol Koch versity of California at Davis, The Icahn Director of Special Projects School of Medicine at Mount Sinai in New Autism Science Foundation York, The University of Texas Southwest- ern Medical School, and Harvard Uni- versity/Beth Israel Deaconess Medical f you have autism or are a family Center. There are plans to add sites for member of someone with autism, you brain research across the US and interna- now have a unique opportunity to con- tionally. Autism BrainNet was formed be- tribute to important research that can cause postmortem studies on brain tissue Ilead to better understanding and treatment represent the best way for researchers to of autism. Last year, the Simons Founda- gain a deeper understanding of autism on tion and Autism Speaks announced the the genetic, cellular, and molecular levels. establishment and funding of a new col- While imaging techniques like MRIs give laboration among leading research institu- scientists some information, the only way tions devoted to advancing brain research. to fully understand the differences in brain In May 2014, the Autism BrainNet, along structure and functioning for people with with its public outreach program It Takes autism is to examine the whole brain after Brains, was formally launched and is urg- death. The people behind Autism BrainNet ing people, whether or not affected by au- understand that brain donation is a difficult tism, to register for brain tissue donation. subject for many and takes courage to dis- There is a severe shortage of brain tis- cuss, but want the public to understand that sue for research. Brain tissue must be re- brain research is the most promising way trieved within 24 hours of a donor’s death, by which scientific research can lead to im- and brain tissue donation is a separate pro- directed by the Autism Science Founda- is coping with autism every day, they have provements in the quality of life for those cess from organ donation. Because it has tion, the MIND Institute of the University registered with Autism BrainNet because on the autism spectrum. been so difficult for researchers to procure of California at Davis, Autism Speaks, and they want to help future generations ben- All individuals and families affected by brain tissue without advance registration, It the Simons Foundation’s Autism Research efit from brain research. In order to obtain autism need to discuss and plan for the fu- Takes Brains seeks to make the public, es- Initiative (SFARI). optimal research results, the Autism Brain- ture. While many families discuss wills, pecially families affected by autism, aware A primary message of It Takes Brains is Net needs to study brain tissue from donors trusts, guardianships, and vocational and of the promise of brain research and the that people who register for brain donation with autism, from donors who are parents living arrangements, It Takes Brains is urg- critical need for people to register to donate are “Superheroes” in the mission to un- or siblings of people with autism, and also ing people who support autism research to brain tissue. The It Takes Brains website derstand and treat autism. It Takes Brains from donors who are unrelated to anyone take a step further and consider registering (www.takesbrains.org) provides detailed profiles the Matthews family of New York, with autism. with the Autism BrainNet now, as a way of information about registration and dona- a family of five that includes a child with The Autism BrainNet is currently com- tion. The It Takes Brains initiative is being autism. Even though the Matthews family prised of the MIND Institute of the Uni- see Brains on page 26 AUTISM SPECTRUM NEWS ~ WINTER 2015 www.mhnews-autism.org PAGE 5 PAGE 6 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2015

Changes in Scores of Genes Contribute to Autism Risk

By The Mount Sinai Hospital at Sciences at the Icahn School of Medicine was able to predict that small differences in The Mount Sinai School of Medicine at Mount Sinai and Director of the Seaver about 1,000 genes will eventually be found Autism Center. Dr. Buxbaum is senior au- to increase autism risk. thor for the Nature study, together with Assembling by far the largest autism mall differences in as many as a Mark J. Daly, PhD, co-director of the Pro- study to date, the international research thousand genes contribute to risk gram in Medical and Population Genetics team collected and analyzed data from for autism, according to a study led at the Broad Institute of MIT and Harvard. 3,871 autism cases, 2,270 sets of moth- by Mount Sinai researchers and the “Beyond autism, we think this work will ers, fathers and their affected children, SAutism Sequencing Consortium (ASC), yield insights into what makes us social be- and additional control samples. This was and published on October 29th, 2014 in the ings,” Dr. Buxbaum said. achieved through the Autism Sequencing journal Nature. “While we have very strong findings in Consortium (ASC), originally funded by The new study examined data on several these genetic analyses, newfound genetic the Beatrice and Samuel A. Seaver Foun- types of rare, genetic differences in more discoveries must next be moved into mo- dation and the Seaver Autism Center with- than 14,000 DNA samples from parents, lecular, cell and animal studies to realize in the Icahn School of Medicine at Mount affected children, and unrelated individuals future benefits for families,” added Dr. Sinai. The ASC is a multiple Principal - by far the largest number to date - to dra- Buxbaum. “A study like this creates an in- Investigator grant funded by the National matically expand the list of genes identified dustry for years to come, with labs world- Institute of Mental Health (NIMH), with with autism spectrum disorder (ASD). wide checking the brain changes linked to additional support from the National Hu- Most of the genes that contribute to each new genetic finding, and searching man Genome Research Institute (NHGRI). autism remain unknown, but the current for drugs to counter them.” In addition to Drs. Buxbaum and Daly, the study increases the number of definitive For the first time, the study authors were PIs are Drs. Bernie Devlin (University of autism genes almost fourfold to 33, com- able to assess the effects of both inherit- Pittsburgh School of Medicine)/Kathryn pared to the 9 genes most closely tied to Joseph D. Buxbaum, PhD ed genetic differences and those that hap- Roeder (Carnegie Mellon University), and risk in recent years by similar studies in pen spontaneously in the sperm and eggs Matthew State (University of California, several labs. It also identified more than Occurring in one out of 68 children in the that go on to form human embryos. While San Francisco). Dr. Buxbaum is the com- 70 additional, likely ASD genes. Each of U.S., ASD affects a person’s social interac- small, rare genetic differences in the top municating PI. these genes is mutated in more than 5 per- tions, including communication, as well as 107 genes were found to confer a rela- The consortium shares patient data be- cent of individuals with autism, signifying behaviors with varying levels of severity. tively large jump in a person’s risk, many cause no single lab has enough to identify a large, relative contribution to risk for a “The steps we added to our analysis over more changes in other genes add smaller obscure genetic patterns scattered across complex genetic disease. past studies provide the most complete amounts of risk. According to the authors, thousands of genomes. The ASC continues By casting a wider net, a research team theoretical picture to date of how many ge- the interplay between gene variations, both to add patients because so far the number from 37 institutions found that previously netic changes pile up to affect the brains common and rare, holds the key to un- of risk genes found has steadily increased unsuspected sets of genes may be involved of children with autism,” said Joseph D. derstanding autism. Along these lines, the with the number of patients studied. Its in ASD risk, including some that control Buxbaum, PhD, Professor of Psychiatry, team, by looking at how many times vari- how nerve networks form in the brain. Neuroscience and Genetics and Genomic ations occurred in each of the 107 genes, see Risk on page 20 AUTISM SPECTRUM NEWS ~ WINTER 2015 www.mhnews-autism.org PAGE 7 PAGE 8 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2015

The Daniel Jordan Fiddle Foundation Announces Groundbreaking Initiatives at Yale School of Medicine and University of Miami CARD

By Linda Walder Fiddle focus on how autism affects individuals Founder and Executive Director throughout their lifespan. The Daniel Jordan Fiddle Foundation Says Linda Walder, “Currently there is virtually no research being done relating to adults and autism, so this collaboration he Daniel Jordan Fiddle Founda- with Yale will lead the nation and, hopeful- tion (DJFF), the nation’s first not- ly, provide much needed insights that will for-profit organization to focus medically benefit individuals and that will exclusively on adults living with enhance their daily lives.” Tautism, has launched two groundbreaking Dr. Jou reports that key areas of research initiatives designed to enrich the lives of au- will include late adulthood given the risk tistic individuals throughout their lifespan. of comorbidities. Depression and demen- With endowment gifts of $100,000 each tia will be two key areas of focus, given to two of the nation’s leading universities, their increased risk in other developmental DJFF is helping to ensure that a laser focus disabilities. will be placed on providing the best lives DJFF’s second gift of $100,000 estab- possible for adults affected by autism for lished a new endowment fund at the Uni- generations to come. versity of Miami’s Center for Autism and First, DJFF partnered with Yale Univer- Related Disabilities (CARD) that will sity Medical School’s Center for Transla- spearhead the further development of their tional Developmental Neuroscience http:// world-renowned programs and enable the childstudycenter.yale.edu/research/index. establishment of much-needed new pro- aspx to establish the nation’s first-ever re- grams and services for adults. With the es- search fund specifically dedicated to study Linda J. Walder, Founder and Executive Director of The Daniel Jordan tablishment of this fund, CARD’s adult and adults and how aging impacts autism. Fiddle Foundation with Dr. Michael Alessandri, Executive Director of transition services will be aligned under The Daniel Jordan Fiddle Foundation the name The Daniel Jordan Fiddle Foun- Adult Autism Research Fund will be led by the University of Miami Center for Autism and Related Disabilities dation Transition and Adult Programs. Roger J. Jou, MD, PhD, who is a leading Says Walder, “We are thrilled to collab- autism researcher, and one of the few phy- which is spent in adulthood,” says Dr. Jou. Linda J. Walder, Founder and Execu- orate with CARD’s executive director Dr. sician-scientists in the nation who has ded- “Our partnership with The Daniel Jordan tive Director of The Daniel Jordan Fiddle Michael Alessandri, a visionary in the field icated his career to the research and care of Fiddle Foundation represents an expansion Foundation reports that this groundbreak- of autism for over 25 years who has created adults living with autism. of our commitment to include adults of all ing research fund will endure in perpetuity “Autism is a life-long condition, most of ages living with autism.” and ensure that vital research continues to see Fiddle on page 23 AUTISM SPECTRUM NEWS ~ WINTER 2015 www.mhnews-autism.org PAGE 9 PAGE 10 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2015

President Obama Signs ABLE Act Major Victory for Persons with Disabilities and Their Families

By The National Disability Institute as a result of the passage of the ABLE Act of 2014. Income earned by the accounts would not be taxed. Contributions to the n December 19, 2014, President account made by any person (the account Barack Obama signed into law beneficiary, family and friends) would not the Achieving Better Life Ex- be tax deductible. pectancy (ABLE) Act. First in- Otroduced in 2006, and subsequent sessions 2. Why the need for ABLE accounts? of Congress, the ABLE Act will allow peo- ple with disabilities (with an age of onset Millions of individuals with disabilities up to 26 years old) and their families the and their families depend on a wide variety opportunity to create a tax-exempt savings of public benefits for income, health care account that can be used for maintaining and food and housing assistance. Eligibil- health, independence and quality of life. ity for these public benefits (SSI, SNAP, “Today marks a new day in our country’s Medicaid) require meeting a means or understanding and support of people with resource test that limits eligibility to indi- disabilities and their families,” Michael viduals to report more than $2,000 in cash Morris, National Disability Institute (NDI) savings, retirement funds and other items Executive Director, said. “A major victory of significant value. To remain eligible for for the disability community, ABLE, for these public benefits, an individual must the very first time in our country’s poli- remain poor. For the first time in public cy on disability, recognizes that there are policy, the ABLE Act recognizes the ex- added costs to living with a disability.” first nonprofit dedicated to improving the about ABLE accounts that individuals with tra and significant costs of living with a He continued. “For far too long, federal- financial health and future of all people disabilities and their families should know: disability. These include costs, related to ly imposed asset limits to remain eligible with disabilities, the organization has ex- raising a child with significant disabilities for critical public benefits have served as tensively documented and called attention ABLE Accounts: or a working age adult with disabilities, a roadblock toward greater financial inde- to the daily reality and extra expenses as- 10 Things You Must Know for accessible housing and transportation, pendence for the millions of individuals sociated with living with a disability, and personal assistance services, assistive living with a disability.” the challenges of navigating the complex 1. What is an ABLE account? technology and health care not covered by NDI has long championed the ABLE web of government rules to maintain pub- insurance, Medicaid or Medicare. Act as a critical strategy to providing a lic benefits eligibility. ABLE Accounts, which are tax-advantaged For the first time, eligible individuals pathway to a better economic future for In recognition of this unprecedented leg- savings accounts for individuals with dis- all people with disabilities. As the nation’s islation, NDI has created a list of 10 items abilities and their families, will be created see ABLE Act on page 23 AUTISM SPECTRUM NEWS ~ WINTER 2015 www.mhnews-autism.org PAGE 11

Naturalistic Intervention in Classrooms: A Look at Classroom Pivotal Response Teaching

By Sarah Vejnoska, BA, effectiveness of the adaptations; and (3) de- Janice Chan, MA, BCBA, velop a manualized program to help teach- Sarah Rieth, PhD, BCBA-D, ers use the intervention (Stahmer, Collings, Jessica Suhrheinrich, PhD, and & Palinkas, 2005). Based on teacher feed- Aubyn Stahmer, PhD, BCBA-D back, the original procedures of PRT were systematically adapted to give more infor- mation on how to use PRT with groups of lassroom Pivotal Response children, target specific IEP goals using Teaching, or CPRT, is a natu- PRT strategies, and train classroom assis- ralistic behavioral intervention tants to use PRT. Teachers also requested designed for classrooms serving adaptation of some components they found Cstudents with autism spectrum disorder difficult to use in groups, and adaptations (ASD). CPRT was created by modifying were tested in a research setting (Reed, an evidence-based practice called Pivotal Stahmer, Schreibman, & Suhrheinrich, in Response Training (PRT), which strives press; Reed, Stahmer, Suhrheinrich, & Sch- to improve learning in children with ASD reibman, 2013; Rieth et al., 2013). These through increasing their motivation. PRT is modifications were made by teachers and naturalistic in that it is intended to be used for teachers to form a novel classroom inter- in natural learning environments (places vention known as CPRT (Stahmer, Suhrhe- and activities that are part of a child’s daily inrich, Reed, Bolduc, & Schreibman, 2011). routine), and behavioral in that it is based CPRT is supported by years of research on the principles of applied behavior anal- conducted on the components of PRT. ysis (ABA). ABA involves modifying an- & Hatton, 2010). However, due to their cedure to ensure the intervention remained CPRT involves eight critical components, tecedents (what occurs before a behavior, complexity, often the use of these strategies effective after alteration. We also wished to each of which is also part of PRT and adapt- such as an instruction) and consequences in community settings can be challenging. create a protocol for use of the strategies ed for classroom use. The components are: (the result of behavior, such as feedback Research conducted in Southern Cali- in the classroom to provide guidance for from the teacher or access to an item or ac- fornia indicates that over 70% of teachers teachers on how to use PRT in a way that Antecedent Components tivity) to produce changes in behavior. Nat- use PRT strategies in their classrooms, but fit with their environment. To meet these uralistic behavioral strategies such as PRT they also report modifying the procedures goals, a team of researchers, teachers, and 1. Gain Student Attention: The teacher have strong research support and are rec- to work better for their individual settings school administrators collaborated to: (1) gains the student’s attention before ommended for improving learning in chil- (Stahmer, 2007). As researchers, we felt it gain a clear picture of the adaptations nec- asking him to say or do something. dren with ASD (National Standards Project, important to better understand the modifi- essary to make PRT meet the demands fac- 2009; Odom, Collet-Klingenberg, Rogers, cations teachers were making to the pro- ing special education teachers; (2) test the see CPRT on page 26 PAGE 12 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2015

Autism and Science: A View From Across the Neural Divide

Karl Wittig, PE my childhood (my mother had kept a diary edge has been gained and significant ad- NYC Regional Facilitator of my early development which described vances in understanding have been made. and Board Member numerous classic autistic traits). This made Although not a specialist, I frequently at- GRASP straightforward and confident what might tend conferences and lectures about autism otherwise have been a difficult and tenu- science and have enough of a layperson’s ous diagnosis, given my advanced age. In background to grasp the essence if not un- am writing this because I am in the short, I tried to approach this in as scien- derstand all the details of such talks. More somewhat unusual position of not tific a manner as I was able to at the time. importantly, I am often able to appreciate only being on the autism spectrum I responded to my diagnosis by learning the significance of what is being discussed and fairly involved in the autism com- as much about Asperger Syndrome and au- to those of us on the spectrum. As much Imunity, but also of coming from a scien- tism as I could, reading every book, article, promise as this research may have for fun- tific background, even if not in the field of and website that I could find on the subject damental understanding, we in the autism autism (I am a retired electronics engineer and attending every conference and lecture community nevertheless need to be con- with degrees in physics, electrical engi- that I could get to. When I learned that Tem- cerned about things that have a more im- neering, and computer science who had a ple Grandin had participated in scientific mediate impact on the lives of those who career in research and development labora- studies of autism, mainly involving brain are affected by autism. tories). As such, I am a great believer in the imaging, I realized that this was something The true significance and value of cur- value of scientific research to the autism that I wanted to do (given my own scien- rent basic research will in many cases not community. tific background). Consequently, when the be fully known until well into the future. I should begin by noting that the very opportunity to be in such a study presented What is of direct value in the present is discovery of autism as a neuropsychologi- itself, I immediately volunteered. I have the knowledge that autism, in its various cal condition came about only as a result of since been in one study at the Seaver Cen- forms, has a scientific basis and explana- modern science, originally through the work Karl Wittig, PE ter for Autism of Mount Sinai Hospital and tion even if it is only partly understood. of Leo Kanner (1943) and Hans Asperger two at the Child Study Center of New York This can help us in the areas of awareness, (1944, more recently rediscovered by Lor- when I looked at lists of the typical traits of University. I am also participating in the accommodation, and acceptance (what I na Wing), and its subsequent understanding affected individuals (which I should note Autism BrainNet initiative that encourages refer to as the three A’s) of autism by our only because of the efforts of countless sci- were generally more specific than vague), people on the spectrum to posthumously local communities and by society in gener- entific and medical researchers. I saw that a very high percentage of these donate brain tissue, which is in very short al. We need to promote greater awareness Although I had suspected that I might applied to me – much too high for it to supply, for autism research purposes. that individuals with autism face certain have some form of autism for the preced- have been a coincidence. Nevertheless, I Current scientific research in autism pri- challenges due to a condition that they ing ten years, I did not finally self-diagnose understood that this was entirely subjective marily takes place in the areas of genetics/ were born with, better understanding of until August of 2000 at the age of 44. I was and so I consulted a specialist who could genomics and of neuroscience/psychology. how to accommodate these challenges, and able to do this because, when I examined confirm my suspicions and ascertain that Although it has not yet led to comprehen- acceptance of the fact that we are as much the criteria for Asperger Syndrome, I found I was not just “kidding myself”. As it hap- sive explanations of either the nature or that I readily met virtually all of them and, pens, I also had very strong evidence from cause of autism, a great amount of knowl- see Neural Divide on page 22 AUTISM SPECTRUM NEWS ~ WINTER 2015 www.mhnews-autism.org PAGE 13

Paving the Road to Success

Debra Solomon, BS ductive, Managing Your Life and Fit for work together to organize each day, and Life and Career Coach Life. Each module will be for a period of brainstorm areas for improvement. For ex- Spectrum Strategies three weeks. ample, by going to bed earlier each night, Developing confidence in any one area and waking up at an appropriate time each of life will lead to confidence and success morning, participants establish a concrete here is increasing interest in help- in another. As stated by the Center on the foundation for a more productive day. ing talented individuals on the Developing Child at Harvard Universi- Such enables the group to develop the nec- Autism Spectrum become more ty, “When children have opportunities to essary time management and organization- fully engaged in the typical world develop executive function and self-reg- al skills, and carry-on these tools into their Tof work, and establish true independence ulation skills, individuals and society ex- everyday lives, even as daily responsibili- and self-sufficiency. Autism Speaks has perience lifelong benefits. These skills are ties may change. promoted a tool kit for employers, adults crucial for learning and development. They As part of Making Your Life More Pro- on the spectrum and their families, to think also enable positive behavior and allow us ductive, participants identify future goals about these issues. However, individuals to make healthy choices for ourselves and whether they are to attend college, or need more experiential opportunities to de- our families.” Participants of the workshop be hired for a job. The module helps to velop, generalize and maintain the skills to practice these skills in an environment that discover areas of strengths and challeng- succeed at work and flourish in life. will both improve and promote positive re- es, as well as areas of interests to better Raul Jimenez and Amy Greenberg of sults in their personal, academic and pro- leverage their abilities, and improve the New Frontiers in Learning stated, “As fessional lives. necessary skills to achieve their goals. future employers continue to become ed- To help establish this desired level of For example, those wishing to attend ucated on disability in the workplace, social confidence, each training session post-graduate education practice the ap- vocational advocates and coaches can Debra Solomon, BS begins with an activity that connects plication process, and work to establish provide a crucial and highly empowering with the particular lesson of that module. a potential major, or trade. Those looking service in aiding, organizing and accli- worked for pay within the first eight years For example, as many are often hesitant for employment learn the steps needed to mating individuals with Autism Spectrum after graduating high school. Through a to share their thoughts aloud, partici- complete a job application and resume. Disorders (ASD) to the world of work four-series workshop, Spectrum Strategies pants anonymously submit the challeng- Participants then engage in role-playing (Autism Spectrum News).” That model provides these individuals with the tools es they have experienced. The group then during which, they are asked typical in- is exactly what inspired Life and Career and guidance necessary to help them cre- works together to address these key areas terview questions, which develop key coach, Debra Solomon, to start Spectrum ate their own road map to a successful and of function. interview skills. Appropriate dress, eye Strategies, a coaching service designed to autonomous future. The first module, A Typical Day in Your contact, body language and verbal com- help young adults create a road map for a The workshop is for men and women, Life, works with participants to devel- munication are all addressed. successful future. According to the Jour- ages 18 to 30, and includes both personal op time management and organizational Managing Your Life is a module in which nal of the American Academy of Child & and professional training, with a focus on skills to outline daily responsibilities and the group discusses the topic of budgeting. Adolescent Psychiatry, in 2013, a reported four key strategies for life; A Typical Day improve overall productivity. Attendees 53.4% of young adults with ASD have ever in Your Life, Making Your Life More Pro- write down a typical day in their lives and see Success on page 24

Debra Solomon is pleased to announce that she will be offering, through Spectrum Services, a series of four Independence Workshops beginning in the winter of 2015. Each module of the series will focus on a variety of skills ranging from time management and organizational skills, to self-advocacy to managing life and work, and will continue Saturdays for a period of 3 weeks each.

Workshops will focus on strategies for life:

A Typical Day in Your Life – Managing time and daily responsibilities Making your Life More Productive – Planning your life path and developing productive steps to meet your goals Managing Your Life – Coping with the nitty-gritty of everyday life management Fit For Life – Improving your skills to handle personal and professional roles and the daily challenges of school and career

After an intake appointment, participants will be offered a chance to participate in individual modules or the whole series.

To inquire about details, including fees and schedule, please contact Debra Solomon at [email protected] or 516-510-7637. For more information on Debra Solomon’s coaching practice, please visit www.spectrumroadmap.com. PAGE 14 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2015

Autism Spectrum News Honors Leaders at New York City Event

Staff Writer writing a strategic plan to guide federal vocacy and Philanthropy, “In recognition Autism Spectrum News spending for autism research. Within the of her tireless efforts to advocate for fam- IACC, she served as co-chair of the safe- ilies touched by autism and her dedication ty subcommittee and currently sits on the to unlocking the mysteries of autism by he speaker at the lectern began subcommittees for Strategic Plan Review funding vital scientific research.” his remarks. “Good evening ev- and Services. Singer also currently serves According to David Minot, Associ- eryone, I am Dr. Jorge Petit. I am on the executive board of the Yale Child ate Director of Mental Health News Ed- honored to be Chairman of the Study Center, on the external advisory ucation, Inc., and Publisher of Autism TBoard of Mental Health News Education, board of the Marcus Autism Center at Em- Spectrum News, “We are so proud of this Inc., publishers of Autism Spectrum News ory University, and on the external advi- year’s honorees for the incredible work and Behavioral Health News. Welcome sory board of the CDC’s Center for Birth they do to better the lives of individuals to our Second Annual Autism Leadership Defects and Developmental Disabilities. and families struggling with autism spec- Awards event.” In 2012, the American Academy of Pedi- trum disorders, and for their work in ad- The Autism Spectrum News Second An- atrics named her an “autism champion.” vancing the science which may one day nual Leadership Event honored two out- Alison currently chairs the International unlock the mysteries behind the causes of standing leaders of the autism science Society for Autism Research public rela- these disorders.” community, Joseph D. Buxbaum, PhD, Di- tions committee and is a member of the Mr. Minot went on to praise his dedicat- rector of the Seaver Autism Center at the IMFAR program committee and commu- ed 2014 Autism Spectrum News Leader- Icahn School of Medicine at Mount Sinai nity advisory committee. Prior to founding ship Event Committee who worked with Hospital, and Alison Singer, MBA, Presi- the Autism Science Foundation in 2009, him to put on this year’s successful event. dent of the Autism Science Foundation. she served as Executive Vice President “I want to give a special thanks to the Dr. Buxbaum is the G. Harold and Leila of Autism Speaks and as a Vice President members of our event committee, without Y. Mathers Professor of Psychiatry, Neuro- Event Honorees at NBC. She graduated magna cum laude whom this event would not have been pos- science, and genetic and genomic Sciences, from Yale University with a BA in Eco- sible. They are: Susan M. Cortilet-Jones, a the Head of The Laboratory of Molecular Joseph D. Buxbaum, PhD nomics and has an MBA from Harvard member of the ASN Editorial Board, Ju- Neuropsychiatry, and the Vice Chair for and Alison Singer, MBA Business School. dith R. Omidvaran, a member of the ASN Research in the Department of Psychiatry The Autism Spectrum News Annual Editorial Board and the MHNE Board of at Mount Sinai. Dr. Buxbaum is the Di- spectrum disorders. Dr. Buxbaum is the au- Leadership event was held at the corporate Directors, Theresa Pirraglia, a member of rector of the Seaver Autism Center, and thor of more than 200 publications, and he is office of EmblemHealth in Lower Manhat- the ASN Editorial Board and the MHNE his research focuses on using techniques co-editor-in-chief of the journal Molecular tan, who donated space for the event. Ac- Board of Directors, Patricia Rowan, a of molecular genetics and neurobiology to Autism (www.molecularautism.com). cording to Dr. Petit, “We are indeed grate- member of the ASN Editorial Board, and identify, and ultimately characterize, genes Alison Singer is Co-Founder and Pres- ful to EmblemHealth for their generosity in Dianne Zager, a member of the ASN Edito- that contribute to autism susceptibility. His ident of the Autism Science Foundation, donating space for our event.” rial Board and the MHNE Board of Direc- laboratory has identified common and rare a non-profit organization dedicated to The honorees each received the Autism tors. I would also like to give a very special genetic variants that underlie autism spec- funding autism research and supporting Spectrum News Beacon of Hope Award. thank you to Thomas Hwang, a young man trum disorders and has developed model the needs of families raising children with Dr. Buxbaum received the Beacon of Hope on the spectrum who provided us with his systems in which novel therapeutics can be autism. As the mother of a child with au- Award in Scientific Research, “In recog- wonderful piano playing for the event. Fi- tested. In addition, Dr. Buxbaum has taken a tism and legal guardian of her adult broth- nition of his vital research in genetics and nally, I would like to thank all of our gener- lead in several international consortia, most er with autism, she is a natural advocate. neurobiology that has led to an increased ous sponsors, donors, honorees, guests and recently the Autism Sequencing Consor- Since 2007, Singer has served on the na- understanding of the cause and treatment volunteers for making the Autism Spec- tium aimed at sequencing 20,000 exomes, tional Interagency Autism Coordinating of autism spectrum disorders.” Mrs. Singer trum News Second Annual Leadership Re- dedicated to advancing research in autism Committee (IACC) which is charged with received the Beacon of Hope Award in Ad- ception a tremendous success!”

Photo Gallery of Attendees at Our Leadership Event

Staff Writer daughter Adina Buxbaum, PhD, Postdoc- #11 Alan Trager, LCSW, MHNE Board #19 Thomas Hwang, the event’s piano Autism Spectrum News toral Research Fellow, Albert Einstein Col- Member and Jorge Petit, MD player and his mother Maria Hwang lege of Medicine who presented the award to her father #12 Susan Cortilet-Jones, MS, LMHC, ASN #20 Representing ValueOptions: David e would like to thank ev- Editorial Board Member and David Minot Glazier, VP, Stephen Ferrante, Director of eryone who attended our #4 David Minot, BA, Alison Singer, MBA, Quality Management, Sarah Metter, Man- Annual Leadership Event. and Ira Minot, LMSW #13 Patricia Rowan, LMSW, ASN Editori- ager of Provider Relations and Alexander We tried to take photos of al Board Member and Mary Zingaro, Par- Serviss, Account Executive Weveryone, but may have missed a few of #5 David Minot, BA, and Judy Omidvaran, ent Advocate you who were there. Here is an index of MHNE Board Member and ASN Editorial #21 Ross Cooper, Director, Digital & Plan- the photographs taken at the event that are Board Member #14 Carey Zuckerman, ASN Editorial ning, GNF Marketing, and representing the shown on page 15. Board Member and Judy Omidvaran Autism Science Foundation: Alycia Halla- #6 David Minot, BA, and Constance day, PhD, Chief Science Officer, Meredith #1 David Minot, BA, Associate Direc- Brown-Bellamy, MPA, MHNE Board #15 Peter Campanelli, PsyD, Barbara Lind- Gilmer, Community Relations Associate, tor, Mental Health News Education, Inc. Member ner, Director, Behavioral Health Services Casey Gold, Operations Manager, and Ali- (MHNE) and Publisher of Autism Spec- Line, NY Presb. Hospital & Stuart Linder son Singer, MBA, President trum News, Joseph D. Buxbaum, PhD, Di- #7 Lois Perlman and Barry Perlman, MD, rector of the Seaver Autism Center Icahn MHNE Board Vice-Chairman #16 Danielle Halpern, PsyD, Assistant #22 Representing Serviced for the Under- School of Medicine at Mount Sinai Hos- Clinical Professor of Psychiatry and Direc- Served: Elizabeth McKee, BCBA, Coor- pital, and Ira Minot, LMSW, Founder and #8 Alan Eskenazi, MA, CPHQ, CASAC, tor of Psychology Training, Seaver Autism dinator of Applied Behavior Analysis Ser- Executive Director, MHNE MHNE Board Member and David Minot, BA Center at Mount Sinai, Joseph D. Bux- vices, William Shea, Behavior Intervention baum, PhD, & Michelle Gorenstein-Holtz- Specialist, Jessica Feldman, Manager of #2 Alex Kolevzon, MD, Associate Profes- #9 Naomi Weinstein, MPH, MHNE Board man, PsyD Assistant Professor of Psychia- Practice Innovation, and Jesse Feldman sor of Psychiatry and Pediatrics, Clinical Member and Jorge Petit, MD, MHNE try and Director of Community Outreach, Director, Seaver Autism Center at Mount Board Chairman Seaver Autism Center at Mount Sinai #23 Representing Services for the Under- Sinai, who presented the award to Alison Served: Amanda Duva, Registered Be- Singer, MBA, President of the Autism Sci- #10 Ira Minot, LMSW, and Former Chair- #17 Alex Kolevzon, MD and Alison Singer havior Technician, Bessie Whitfield-Vick, ence Foundation man, Peter Campanelli, PsyD, Child Psy- Behavior Intervention Specialist, and chologist, McSilver Institute for Poverty, #18 Paul Novello, LCSW, Clinical Ser- Nevila Cerriku, Behavior Intervention #3 Joseph D. Buxbaum, PhD, and his Policy, & Research vices Director, ValueOptions and Ira Minot Specialist AUTISM SPECTRUM NEWS ~ WINTER 2015 www.mhnews-autism.org PAGE 15

Autism Spectrum News Honors Leaders at New York City Event

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Autism a Major Theme at YAI 2015 Conference May 4-7 in New York City

By The YAI Network • Autism Support Team: A Model that Works!

utism will be a major topic at • Targeting Play Skill Development in YAI’s 2015 Conference, “Liv- Preschool Autism Intervention ing, Loving, Working and Learning,” on May 4-7, at the • Using Art to Enhance Literacy-Learn- ANew York Hilton Midtown, 1335 Avenue ing in Students with Autism of the Americas. The conference will feature more ex- • Education of an Aspie: College panded workshops on autism, providing Through My Eyes attendees with access to hands-on training and leading experts. • Preparing School-Age Students with Autism for Success in Adulthood The Center for Children Among this year’s autism workshops are: • Using Schedules and Other Visual Sup- • I Have Asperger’s ... He Has Autism! ports to Teach Skills and Promote In- with Special Needs Making a Romance Work dependence in Individuals with Autism

• A Musical Curriculum for Individuals To request a conference brochure, visit & with ASD yai.org/conference2015. Questions? Contact Abbe Wittenberg, Conference Manager, at The Center for Independence • Using Creative Artws Therapies with 212-273-6472 or [email protected]. Middle School Children with Autism To reserve your hotel room at a discount- Spectrum Disorders​ ed conference rate, visit our personalized YAI group page (https://aws.passkey. • Bullying and Children with ASD com/event/12157142/owner/6708/home) or call 212-586-7000 and mention group Dr. Michael D. Powers, Director • Practical iPad-Based Social Skills for code: YAI. The deadline for the discount is Children with ASD April 13, 2015.

• Diagnosis and evaluation of children and adults • Outpatient treatment for children and adults with ASD and their families • Consultation and program development to educational programs and human service organizations • Consultation and training for professionals

Providing evidence-based services to individuals with Autism and other neurodevelopmental disabilities and their families for over 20 years.

2300 Main Street, Glastonbury, CT 06033 & 2213 Main Street, Glastonbury, CT 06033

860.430.1762 office ● 860.430.1767 fax

[email protected] ● www.ccsnct.org

www.facebook.com/ccsnct AUTISM SPECTRUM NEWS ~ WINTER 2015 www.mhnews-autism.org PAGE 17

Evaluating the Ability of Learners with Autism to Work in Small Groups

By Helena Maguire, MS, BCBA, Mary Jane Weiss, PhD, BCBA-D, and Frank L. Bird, MEd, BCBA Melmark

earners with autism do well with one on one instruction, and this is widely known. However, the provision of one-to-one instruc- Ltion on a long-term basis is not efficient or realistic. Funding streams, particularly in adulthood, do not support this level of staffing. Furthermore, the ability to follow instructions delivered to a group is essen- tial to successful integration in school, vo- cational and community settings. In our clinical work at Melmark, we have found that this issue is a challenging one for educational teams. Often, there are Helena Maguire, MS, BCBA Mary Jane Weiss, PhD, BCBA-D Frank L. Bird, MEd, BCBA diverse opinions about a student’s read- iness for group instruction. Educational development often results in long-term re- settings available to them. the promotion of independence and the suc- team members and parents often have liance on a 1:1 instructional ratio. From a clinical and research perspective, cessful transitioning of our students to less strong opinions about readiness for group Prolonging this ratio beyond the instruc- it is important to identify any learner’s ca- restrictive settings or into adult programs. instruction or about the need for continued tional need, however, may be counter-pro- pacity for group instruction. There are few Although research has indicated that indi- individualized instruction. ductive. Some learners may become de- guidelines about how to assess such capac- vidualized instructional arrangements are Concerns about behavioral regression pendent on this level of support, and it may ity. While there is agreement on the impor- highly effective with individuals with au- and about a slowed rate of acquisition of- impede their ability to transition to settings tance of reduced staffing and independent tism who display challenging behavior, the ten result in long-term provision of indi- with less rich instructional ratios. One of responding, there is a need for explicit tools resources necessary to provide intensive vidual instruction. This is understandable, our primary obligations is to ensure that for assessing a learner’s ability to demon- staffing to all students are rare (Kamps & as established skills need to be maintained. we prepare learners for next (and ultimate) strate and learn skills in a group setting. Walker, 1990). Not only is intensive staff- Furthermore, learners with developmental settings. Future settings do not generally ing often unrealistic, some research indi- delays and slowed skill acquisition need provide such rich instructional ratios. A Prior Research cates that 1:1 instructional formats hinder more intensive instruction to learn. Worry student who requires such support as an over loss of skills and a slowed rate of skill adolescent or adult learner may have fewer Fading intensive staffing is essential to see Evaluating on page 25 PAGE 18 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2015

Understanding Treatment Effect Scores in Behavioral Therapy Research

By Monica E. Carr While many children have the benefit of (Horner, Swaminathan, Sugai, & Smol- Doctoral Researcher accessing ABA-based early intervention kowski, 2012). The WWC Procedures Monash University programs, others who face a life time of and Standards Handbook describe qual- Melbourne, Australia autism related challenges may grapple with ity assessment procedures for both group little to no funding for support services. For design and SCD research (Kratochwill et some, geographic isolation may impact the al., 2013). Methodology for determening urrent prevalence estimates re- ability to access support services while for strength of treatment effects in group de- leased by the Center for Dis- others socio-economic factors may mean sign research is well established, howev- ease Control (CDC) suggest that that families in under-funded communities er for SCD research the most appropriate one in 68 children in the United may struggle with limited access to support approach to determine treatment effect is CStates may have Autism Spectrum Disor- services. surrounded by ongoing debate. der (ASD) (CDC MMWR, 2014). The core Accordingly, the ability for parents, The current WWC SCD pilot guidelines impairments that characterize autism - so- teachers and clinicians alike to access and recommend that a treatment may be con- cial and communicative functioning and interpret scientifically robust information sidered evidence based if a set of studies the presence of restricted, repetitive and on evidence based treatments is essential. have met the minimum 5-3-20 rule: stereotyped interests and behaviors - are Researchers working in a behavioral thera- reportedly experienced to varying degrees py paradigm often utilize Single-Case De- • At least five SCD studies document into adulthood (Roth, Gillis, & DiGennaro sign (SCD) methodology as these designs experimental control; Reed, 2013). Support systems have been make it possible to draw scientifically valid slow in adapting to the needs of transition Monica E. Carr conclusions (Baer, Wolf, & Risley, 1968). • The five studies were drawn from at aged youth with ASD and many adults on SCD research is of particular importance least three different research teams/ the spectrum have been described as so- that claim to treat or cure autism. In partic- to the autism community as these research locations, and; cially isolated, economically unproductive, ular chelation therapy, hyperbaric oxygen designs are highly suitable for accommo- and financially disadvantaged (Howlin, therapy, miracle mineral solution, detox- dating the unique characteristics of indi- • The five studies document effects for 2008; Geller & Greenberg, 2010). ifying clay baths, coconut kefir and other viduals on the spectrum. Treatment pack- at least 20 different participants. While there are a wide variety of po- probiotic products were listed. ages can be developed for older students tential treatments available for supporting A combination of genetic makeup and and adults in addition to younger children. Currently, the WWC panel has cautioned individuals with ASD, a long history of lived experiences contribute to a unique The What Works Clearinghouse (WWC) against calculating a treatment effect score failed treatments and fads has been report- personal profile of strengths and deficits was formed under the Education Scienc- for SCD research until a greater consensus ed (Food and Drug Administration, Con- for those on the autism spectrum, and a fo- es Reform Act (2002) to address the con- on a best method is reached. In the inter- sumer Health Information, 2014). In their cus on individuality is essential when iden- cerns of Evidence-Based Practice (EBP) im, visual analysis has been suggested as report, the FDA warned that a number of tifying treatment options. Applied Behav- and empirically-supported treatment that the preferred method to evaluate treatment companies may face legal action should ior Analysis (ABA) based treatments are may enable federal and state governments effects. However, a treatment effect score they continue to promote false or mislead- endorsed by the U.S. Surgeon General and to invest in educational, clinical and so- ing claims about products and therapies the New York State Department of Health. cial practices that are scientifically valid see Scores on page 24

Spectrum Services

A Cooperative Private Practice Offering an Array of Specialized Services Spectrum Services provides child and adult diagnosis, family and couples therapy, social seminar and social skills groups, specialized individual skill- building therapy, cognitive behavior therapy (CBT), trauma focused therapy and EMDR, dialectical behavior therapy approaches, mindfulness work, college coaching and transition support, psychoeducational, neuropsychological, and speech & language testing, vocational support, family support, and educational consulting for individuals and families affected by Autism Spectrum Disorders and related conditions. Lynda Geller, PhD, Founder www.spectrumservicesnyc.com • [email protected] 303 Fifth Avenue, Suite 1003, New York, NY 10016 AUTISM SPECTRUM NEWS ~ WINTER 2015 www.mhnews-autism.org PAGE 19

A Boy and His Dog to bed and the mom is upstairs reading, he There are all these boys and only one lit- sits on the big red couch and he calls to me tle girl. When you look at her you just think in a quiet voice. about the color pink. She is sweetness and Allow me to introduce myself. My name “Wolf, come on boy, come sit with me.” light and airy and calm, like the most deli- is Wolfie. I sit next to him and we watch shows that cate wafer cookie you hold on your tongue I am half Bichon and half Shih-Tzu, also the mom doesn’t like; baseball and politics until it melts. known as a Teddy Bear Dog or a Zuchon. and something weird called The First 48. But she works very hard. She is the first I am sixteen and a half pounds and I barely But I can tell by the absentminded way he one awake to take me out in the morning, stand a foot off the floor, but do not let my rubs my foot that he’s only half-listening to even before I ask, and all day long she is size fool you. I may be small, but I am mighty. the television. Instead he’s thinking about trying to do things for other people; pack I’ve been with my family for five months his patients and his children and tax returns their snacks or sweep the floor or straight- now. Everyone keeps saying the Easter and healthcare and insurance. en the playroom. Bunny brought me as a surprise. There are a lot of people in this house. Her mother worries and the Dad guy But I remember the two biggest people Seven. Two big people and five kids. One hopes if he tells her how beautiful and in the family—the mom and the dad peo- time a man came and delivered some food smart and sweet she is, she will believe ple—came to pick me up in a conference in a brown paper bag that smelled deli- it forever and never listen if someone ac- center off the highway in a small town cious. When he stepped into the kitchen cuses her of being fat or ugly or stupid or called Portsmouth. We drove around for and saw all the kids at the counter, he asked worthless. hours and then snuck home because they if we were having a birthday party. I’m not worried, because this pink girl is said the kids were finally asleep. I never The round boy laughed and shouted, so very strong. did see a bunny. “Yes! It my birthday! Let’s sing HAPPY There is a very big boy, a boy who stands For the first two weeks I was in my new BIRTHDAY TO ME! Happy birthday to taller than the mom’s shoulder. He wears home, I tried this strategy: me!” until the mom said, “Okay, Henry, we glasses. They call him a tween sometimes, Jack with his dog Wolfie heard you. Eat your egg roll.” and I don’t know what that means but it Pee on couch. Look adorable. This Henry boy is the smallest, but he seems to annoy him. guy said I was on something called thin isn’t too small. Life is very, very exciting He and the mom can really get each oth- Poop on rug. Appear irresistible. ice and I’d better get house trained soon. for him, and he is very loud about it all. He er going laughing. They both like the same He had just stepped in one of my puddles fills up every room with his chatter and his jokes. But there is a strain that I don’t think Pee on floor. Tilt head to one side with wearing only his socks. laughter and his drawings, and he is squishy was there before. It feels new. cutest expression possible. He pretends he doesn’t like me, this dad. and delicious and curious and smart. He is It feels like the beginning of something But I’m not fooled by him. When it’s late so alive, you can almost see his heart beat- This went on for a while until the dad at night and all the small people have gone ing through his favorite Batman shirt. see Dog on page 21 PAGE 20 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2015

Genetics from page 1 variants — perhaps with greater environ- lings. Without these data, the conclusions variants (missense) needs to be understood mental contribution, may lead to autism in we reached would have been far murkier. at the functional level. In many respects, Where to Look this group. We can refine our analysis by applying the real fun is just beginning. It’s also possible that we have already statistical models to integrate information This article was originally published on The good news is that we have truly be- found the most important genetic contribu- in inherited variation and studies that com- SFARI.org and is reprinted with permission. gun to narrow the search. Put simply, we tors to autism. Simply extending the current pare data from cases and controls with the You may view the original article, published have a much better idea of where to look discovery paradigm along existing lines existing de novo data. Data from people 9 December 2014, at http://sfari.org/news- than we used to. The cost of sequencing might yield diminishing returns, despite the with other disorders are also an essential and-opinion/viewpoint/2014/future-of-au- continues to drop, and sequencing the en- many candidate genes already identified. piece of the puzzle. tism-genetics-should-learn-from-its-past. tire genome is rapidly becoming a finan- There is legitimate reason to question It is important to remember that these Michael Ronemus is research assistant cially viable option. whether groups containing a large propor- models need to account for the unique fea- professor at Cold Spring Harbor Labora- These data will enrich the existing data- tion of high-functioning males will be in- tures of autism spectrum disorders. This tory in New York. News and Opinion arti- set by uncovering genomic regions that formative, at least in the near term. Genet- includes well-established characteristics cles on SFARI.org are editorially indepen- were not accessible using previous meth- ic efforts may be most effective if directed such as the high male-to-female gender ra- dent of the Simons Foundation. ods4, 5. Dropping costs will also allow us to toward females and lower-IQ males with tio and the implication that females serve sequence large numbers of gene candidates autism, who are the most likely to carry as carriers due to a protective effect. References in large populations, as was done previous- harmful mutations. It also includes more recent observa- ly for smaller gene sets6. We also need to know where not to look. tions: for example, the lack of overlap in 1: Iossifov I. et al. Nature 515, 216-221 However, in some ways our current ap- Almost all families in one well-charac- gene targets between males of high and (2014) PubMed proach may be reaching its limit. For ex- terized group, called the Simons Simplex low IQs and the finding that females have 2: Poultney, C.S. et al. Nature 515, 209-215, ample, the types of mutations highlighted Collection, include at least one unaffected more deleterious mutations in genes ex- (2014) PubMed in our two studies are more rare in males sibling. (The collection is funded by the pressed during embryonic development 3: Ronemus M. et al. Nat. Rev. Genet. 15, 133-141 with autism who have intelligence quo- Simons Foundation, SFARI.org’s parent than would be expected by chance. (2014) PubMed tients (IQs) above 90, and the genes affect- organization.) As a final note, the new studies also ed largely do not overlap with the genes This allowed us to do statistical analy- highlight the contribution of de novo ‘mis- 4: Levy D. et al. Neuron 70, 886-897 (2011) PubMed mutated in females or in males with autism ses to calculate the overall likelihood of sense’ mutations, which have less clear 5: Sanders S.J. et al. Neuron 70, 863-885, who have IQs of 90 or below. mutations being found in an individual effects on protein function. This relation- (2011) PubMed This suggests that another, relatively un- by chance. It also allowed us to exclude ship between strongly inactivating vari- 6: O’Roak B.J. et al. Science 338, 1619-1622 explored type of risk — such as common genes that are mutated in unaffected sib- ants (harmful) and moderately inactivating (2012) PubMed

Risk from page 6 the enzyme influences when specific genes structions encoded in DNA are called mu- Therapeutics, Preventive Medicine Phar- are turned on or off, and the study results tations, with some inherited and others oc- macology and Systems Therapeutics, and many investigators share samples, data, support the theory that such mechanisms curring when the egg or sperm are formed Neuroscience, along with researchers from and ideas without first publishing them in may be altered in autism, such that devel- (de novo mutations). the Friedman Brain Institute, the Mindich medical journals, a unique level of collabo- oping brain cells may not mature, divide, Past studies looking at genetic autism Child Health and Development Institute, ration that is accelerating discovery. or migrate the same way. risk focused only on de novo mutations and the Icahn Institute for Genomics & “The genetics underlying ASD are high- Other variations linked to autism by the that caused any key protein to stop work- Multiscale Biology. ly complex and having access to large study were in genes that govern synapses, ing (loss-of-function mutations). The cur- Playing vital roles in the study were re- sample sizes is essential to rooting out the the spaces between nerve cells in pathways rent study looked at both inherited and de searchers from leading universities world- many genetic mutations involved, and the that “decide” whether signals travel on- novo loss-of-function mutations, along wide, along with the National Institutes of biological mechanisms implicated by those ward. Nerve cells must be able to execute with de novo “missense” mutations in af- Mental Health, the Wellcome Trust Sanger mutations,” said Dr. Daly, also founding well-timed maneuvers, such as allowing fected children and their parents. Where Institute and National Health Service Trust chief of the Analytic and Translational Ge- charged particles to build up or rush out of loss-of-function mutations are blunt, caus- Fund in the United Kingdom. For a com- netics Unit at Massachusetts General Hos- them, to pass on nerve signals normally. A ing the resultant protein to stop working, plete list of authors and institutions, please pital. “This sort of study cannot be done third set of genes linked to risk by the study missense mutations may make a protein see the Nature study text. without the collaboration and cooperation regulate basic steps that turn genes into work slightly less well. Being more com- we relied on across the consortium.” proteins. For a protein to be built based on mon and subtle, they are harder to spot, but About The Autism Sequencing Consortium genetic code, the code must be translated the current study shows that they make a Surprise Links into related molecules (transcription) and sizeable contribution to ASD risk. Founded in 2010 by Dr. Buxbaum, the cut up and rebuilt (spliced) into the core The new study was also the first to com- Autism Sequencing Consortium (ASC) is The Nature study points to three path- instructions for protein building. pare the rate of different classes of muta- an international group of scientists who ways required for healthy development Study researchers reached their conclu- tions between girls with ASD and boys share ASD samples and genetic data. All where variations in genes were linked to sions with the help of new DNA sequenc- with ASD. Feminine genetics somehow shared data and analysis is hosted at Mount greater autism risk, in some cases confirm- ing techniques, which determine the order protect girls from ASD, so comparing mu- Sinai on a supercomputer called Minerva ing past study results. Among the surprises of the letters (bases) making up the genetic tations between girls and boys enabled the designed by Mount Sinai faculty, which was a newfound association between au- code to reveal rare variations, some linked authors to estimate the risk associated with enables joint analysis of large-scale data tism risk and variations in genes that con- to disease risk. The current study em- different kinds of mutations. Using this from many groups. The ASC is supported trol “chromatin remodeling.” ployed whole exome sequencing, which is approach, the study authors found muta- by a multiple Principal Investigator (MPI) As part of the organization of genetic a less expensive, more focused version of tions that came with a more than 20-fold grant funded by the National Institute of material within cell nuclei, DNA forms a whole genome sequencing. By looking at increase in risk for autism. Mental Health (NIMH), with additional complex with proteins called histones to only the protein-coding part of genes, ex- This article was reprinted with permis- support from the National Human Genome become chromatin. Long chains of DNA ome sequencing precisely identifies small sion. You may view the original article, Research Institute (NHGRI). The MPIs at wrap around histone “spools” that unwind changes in the gene code that in turn affect published on October 29, 2014, at www. the four lead sites are Drs. Joseph D. Bux- with the right signal. The unwinding makes specific spots in a resulting protein. eurekalert.org/pub_releases/2014-10/ baum (Icahn School of Medicine at Mount stretches of genetic instructions accessible The study results also revolve around tmsh-cis102914.php. Sinai), Mark J. Daly (Broad Institute of to the machinery that builds proteins, which genetic mutations. Changes occur in our Along with Dr. Buxbaum, researchers MIT and Harvard), Bernie Devlin and comprise bodily structures and signals. genetic code at a steady rate thanks to the from several teams within the Icahn School Kathryn Roeder (University of Pittsburgh One group of genes newly linked to au- error-prone processes that copy the code of Medicine at Mount Sinai played a role in School of Medicine and Carnegie Mellon tism, for instance, codes for an enzyme that and other factors, and despite mechanisms this landmark Nature study and in the ASC, University), and Matthew State (Universi- regulates histones by attaching or remov- bent on weeding out faulty code. Part of including teams within the departments of ty of California, San Francisco). ing methyl groups to one of their building evolution, changes in the order of the Psychiatry, Genetics and Genomic Scienc- blocks, lysine amino acids. By doing so, “letters” (base pairs) making up the in- es, Pediatrics, Pharmacology and Systems see Risk on page 24 AUTISM SPECTRUM NEWS ~ WINTER 2015 www.mhnews-autism.org PAGE 21

Reading from page 1 struction (DI) program, Corrective Read- York. She has eight years of experience ing Thinking Basic: Comprehension Level working with children and adults with ar- environmental signs, grocery aisle signs, A – featured use of scripts, choral student ticulation, stuttering, language, and au- and spoken words to printed words (i.e. responses, cuing student responses, cor- tism spectrum disorders. She is an ASHA Dolch words). Massed trials – students rection of errors, modeling and indepen- Mentor and a recent recipient of v award. responded to each sight word in succes- dent practice. Peer tutoring with typically For more information, please email ster- sion during flash card drills. Differential developing peers – typically developing [email protected]. positive reinforcement – students were pre- peers provided 1:1 tutoring sessions fol- sented with sight word stimuli and were lowed by 10 minutes of free play activities References required to read each word. They were with tutees. Tutors provided task direc- given feedback on correct and incorrect tions, modeling, and prompting. Class- Annie E. Casey Foundation. (2014, Janu- responses. They received praise, tokens, wide peer tutoring (CWPT) with typically ary 28). Low reading scores show majori- and/or food for corrected errors. Systemat- developing peers – it featured reading in ty of U.S. children not prepared for future ic prompting – students were given defined pairs, feedback from peers for oral read- success. [Web log comment]. Retrieved prompts when presented with sight word ing, 3 minutes of reading comprehension from http://www.aecf.org/blog/low-read- stimuli. Overall, students with ASD, even questions (WH questions) by tutors, and ing-scores-show-majority-of-us-children- those with no prior reading instruction and error correction. Cooperative Learning not-prepared-for-future-s/ limited oral language, learned to identify Groups (CLG) with typically developing printed words. Sight word instruction is an peers – featured teacher-directed reading El Zein, F., Solis, M., Vaughn, S., & Mc- evidence-based practice to teach students instruction, peer tutoring on vocabulary Culley L. (2014). Reading comprehension with ASD. words, WH question practice, and factual intervention for students with autism spec- information game based on the story. Story trum disorders: A synthesis of research. Reading Comprehension Intervention Map – student read a passage, then used Journal of Autism and Developmental Dis- a graphic organizer Story Map as a visual orders, 44, 1303-1322. The challenges that students with ASD Tamara Sterling, MS, CCC-SLP, TSSLD map of literal story elements (characters, have with reading comprehension can place, time, beginning, middle, and end). Individuals with Disabilities Education be explained by three theoretical frame- appropriately obtain meaning from read- Reciprocal questioning and scaffolding in- Improvement Act of 2004. Pub. L. No. works (Gately, 2008 as cited in El Zein, ing passages, readers are required to be struction using SCORE curriculum – fea- 108-446, 118 Stat. 2647 (2004). Solis, Vaughn, & McCulley, 2014). One flexible in adapting to changes in printed tured students with ASD and typically de- is the theory of Weak Central Coherence text. Reading comprehension, for students veloping peers taking turns reading a story Lanter, E., & Watson, L.R. (2008). Pro- (WCC). It explains that students with ASD with ASD, is achieved when they appro- out loud and asking questions. Scaffold- moting literacy in students with ASD: The present with challenges in identifying priately summarize information, retrieve ing instruction featured modeling, verbal basics for the SLP. Language, Speech, and main ideas and summarizing. The Theory and apply prior knowledge, understand prompting, and corrective feedback and Hearing Services in Schools, 39, 33-43. of Mind (ToM) framework states that stu- social cues and character emotions, and taught question generation and response. dents with ASD often do not comprehend make inferences from printed text. These SCORE curriculum features five social Nation, K., (1999). Reading skills in hy- the emotion/internal states of characters in are high-level reading skills and students skills: share ideas, compliment others, perlexia: A developmental perspective. reading passages and thus are challenged with ASD struggle with skilled reading be- offer encouragement or help, recommend Psychological Bulletin, 124, 228-355. with predicting character actions (Car- cause of their challenges with interpretive changes nicely, and exercise self-con- nahan & Williamson, 2010, Colle, Bar- language. trol. Overall, explicit instruction, student Nation, K., Clarke, P., Wright, B., & Wil- on-Cohen, Wheelwright, & Van der Lely, Evidence-based practice for reading grouping practices, graphic organizers, liams, C. (2006). Patterns of reading ability 2008, and Williamson, Carnahan, & Ja- comprehension intervention, for students and strategy instruction are effective inter- in children with autism spectrum disorder. cobs, 2009 as cited in El Zein et al., 2014). with ASD, is increasingly becoming nec- ventions for increasing reading compre- Journal of Autism and Developmental Dis- The third framework is the Executive essary as they are now being included in hension in students with ASD. orders, 36, 911-919. Dysfunction Theory (EDF). It explains general education classrooms. El Zein et The current best evidence reading inter- that students with ASD may have unique al. (2014) synthesized reading compre- vention for students with ASD, that should No Child Left Behind Act of 2001, Pub. L. frontal lobe activity that is manifested by hension intervention studies that were guide clinical and academic practice, are No. 107-110, 115 Stat. 1425 (2002). challenges with planning, flexibility, and conducted on students with ASD. The out- sight word and reading comprehension in- self-monitoring (Pennington, et al., 1997 come identified interventions that increase tervention. Spector, J.E. (2011). Sight word instruction as cited in El Zein et al. 2014). These reading comprehension. The following are for students with autism: An evaluation of challenges lead to reading comprehension effective reading comprehension interven- Tamara Sterling, M.S. CCC-SLP, TSSLD the evidence base. Journal of Autism and deficits because in order to accurately and tions for students with ASD: Direct In- is a Speech-Language Pathologist in New Developmental Disorders, 41, 1411-1422.

Dog from page 19 “I DO NOT like dogs. You have ruined no para no para. I barked once, twice, my Slowly the three of us walked back up my life. With this dog.” voice not as sharp as hers, more like an ice the driveway. They looked down and start- and the end of something all at the same I don’t know anything about autism or cube clattering into a smooth glass. ed talking to me in a funny voice with fun- time. He is starting to cleave from them, how to help people who have it. So I just He fell to his knees next to me and bur- ny words. “You a wittle doggy, wight? Just to long for video games and something did the only thing I knew how: I waited. ied his fingers into the fur around my neck, a wittle pup-pup.” I felt confused. called an iPhone and movies that are PG- I waited and waited and one afternoon where it’s longest and deepest. Through his Then I understood. Their babies were 13. The mom, she knows this, and her heart when no one was watching he crept over to fingertips, I understood. I knew. Somehow, gone. Now I was the baby. is aching to make the most of the time she where I was lying on the couch. With one because of this strange thing called a para, Last weekend we all went to a big field to has left, before this tween will pack up his finger he stroked my paw. the boy felt different. He felt worried and play with a black and white ball. The mom glasses and his gym shorts and his Nook “You are. Soft.” alone and disappointed. and dad kicked it around with the kids, but and drive down the driveway to a faraway This boy gets very, very mad. One day He felt less. the second boy said he only wanted to hold place called college. over the summer his temper rose until There is another boy. He looks just like my leash and run with me. I may be very close to the floor, but I it felt like the sun was shining inside the the dad, with dark hair and deep brown So we did. We ran and ran through the see it all. house, the rays too hot to touch. He was eyes that make you think of chocolate. He fields together. And with each big step he There’s another big boy, just about as screaming and hitting his head over and is all fun, this one. took I could tell, for the moment, he was tall as the first boy. He also wears glasses. over again. But every once in a while a shadow free. Free of the shame and rage and con- From behind they look like the same boy “No para! I will not have a PARA!” crosses his face and his eyes get cloudy, fusion and panic that follow him around all and sometimes people mix them up, but I I did not know what a para is, but the like the rain is coming. That’s when I know day like uninvited guests. never do. mom seemed to because she kept talking he needs a little extra cuddle and I just turn Running by my side through the rich From what I understand, I was supposed softly, telling him to take a deep breath and on my back so he can rub my soft, white green grass, he wasn’t a child with autism to help this boy. He has something called calm down, they would talk about it. belly. He rubs it until the sun shines again. or a fifth grader with a para or a brother autism and he was very, very afraid of Then he came for her. With his fists curled “Come on, Wolfie, run outside with me!” who is not like the rest. dogs, even little ones like me. into the tightest balls he charged her word- A couple of weeks ago the big yellow He was, quite simply, just a boy and his dog. When the mom first brought me in from lessly. She grabbed his wrists and held them bus started coming around again. We all the garage where I was hiding and trying to with her long fingers and said, “Enough walked down to the bus stop and everyone “What Color Is Monday?” is available stay very, very quiet, all of the kids squealed Jack,” so sharply her voice was like a knife was so excited. But when the kids got on on Amazon.com and BarnesandNoble.com. and laughed and clapped their hands. But he cutting through the hot, still room. and the bus pulled away, the mom put her You can also follow Carrie on her weekly didn’t. His face was all twisted up and his He dropped his arms to his sides and the head on the dad guy’s shoulder and said, blog: www.WhatColorIsMonday.com and voice was very loud and angry-sounding. only sound was his whimpering, no para “Oh, Joe.” Facebook.com/WhatColorIsMonday. PAGE 22 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2015

Neural Divide from page 12 all of medical science due to the great va- but not yet yielded any reliable method of agnose autism using genetic tests alone. riety of coping mechanisms that individ- performing a diagnosis. Also, brain scans This will provide some assurance to those a part of our society as anyone despite our uals with autism develop to compensate are far too expensive for use on such a mas- in the autism community who fear that unusual differences. Autism science has for their deficits over the course of their sive scale. Other neurological techniques such a test might be used for eugenic pur- much to contribute in advancing all three. lives. Current diagnostic practice usually such as transcranial magnetic stimulation poses. Where such tests will have value, in Autism science has also yielded much involves a large battery of psychological (TMS) have actually shown statistical- conjunction with other methods, is in the that is of direct value to people on the tests, many of which are far better suited ly-significant results in studies at Harvard early detection of autism which can in turn spectrum. This has primarily been in the for children than adults, and interviews of Medical School where autistic subjects re- lead to effective interventions in small evaluation of therapies and treatments to childhood caregivers, who may have long sponded differently from neurotypical con- children. Such methods may also be of use determine which are effective and which forgotten much relevant information or trols. I attended a talk at which these results in performing adult diagnoses. In addition are of no value (in some cases fraudulent). even be deceased. were described, and immediately saw their to genetics and genomics, autism research One good example of this was the dis- Ideally, I would like to see a test that can potential as a possible diagnostic method. is finding applications for epigenetics (the crediting of Bruno Bettelheim’s theories be done in a clinician’s office to quickly Surprisingly, there was little interest on the activation/deactivation of specific genes) about “refrigerator mothers” and the inef- determine whether a patient is on the au- part of the attendees, who were more inter- and proteomics (mapping of the actual fective psychotherapies which were based tism spectrum and, perhaps, to what degree ested in very preliminary findings related proteins that are synthesized by cells from on them. More recently, controlled studies – I consider this to be the “holy grail” of to possible therapeutic methods using this DNA sequences with the genetic code); have shown that traditional psychothera- adult autism research. Given that the prev- technique. To me, this is indicative of a the latter is currently being studied at pies have little or no effect on people with alence of autism in the general population general lack of interest in the issue of adult Clarkson University and other places, and autism – with the notable exception of cog- is currently estimated as 1 in 68, and that diagnosis. It is also indicative of the inter- has shown some promise towards future nitive behavioral therapy (CBT) which has the dramatic increase in this figure over est in finding “cures” rather than providing diagnostic methods. been successfully used on many. Although, the past 20 years is largely attributed to the accommodations and services that our I want to take this opportunity to encour- as is well known, there is no single effec- improved diagnosis (i.e., the prevalence community needs. Magneto-encephalog- age readers who are involved in any rele- tive treatment for autism, numerous tech- in the past was not dramatically lower), raphy (MEG) is another method that has vant research to consider its possible impli- niques and therapies have been demon- the number of undiagnosed and unidenti- been used in research on response times to cations for adults on the autism spectrum. strated to be effective in addressing some fied adult autistics is staggering. In New auditory stimuli at Children’s Hospital of In particular, anything that could lead to a debilitating traits, deficits, and challenges York City alone, there are probably around Philadelphia and may have some potential diagnostic method will be of great benefit of autistic individuals. Most of these are 100,000 adults on the spectrum, and the as a diagnostic tool. to our community. the products of scientific work in areas re- number for the U.S. is in the millions. Al- Genetic and genomic research is another In conclusion, science is more respon- lated to autism. though many have managed to “get by” avenue that may have diagnostic potential. sible for the benefits that we all enjoy in Of greatest personal interest to me as and even enjoyed some degree of success It is by now well-established that there is the modern world than any other single an adult on the spectrum, however, is (as did I), most of them have lived entire no “autism gene” – in fact, hundreds of factor. In the same manner, science offers the development of a quick, simple, and lives with the challenges of autism but nev- genes have been found to be connected enormous potential for addressing the is- reliable method of diagnosing adults, es- er even heard of an autism spectrum dis- to autism, and estimates show that ap- sues and challenges that people living on pecially older adults. Straightforward as order, let alone known that they were on proximately 1000 genes are so connected. the autism spectrum face. Let the march of it may be for qualified professionals to the spectrum. Scientific research offers the Given that the human genome consists of scientific progress continue, especially in identify or diagnose a child on the autism only hope of finding a practical means of 22,000 genes, this means that as many as the area of autism. spectrum, diagnosing an adult is an en- identifying them. 5% of all genes in some way affect autism. tirely different matter. This may be one of Brain imaging techniques such as MRI Consequently, it will be very difficult, and For more information, Karl can be the most difficult diagnoses to perform in and PET have been used in much research, most likely impractical, to effectively di- reached at [email protected].

BEHAVIORAL HEATH NEWS Annual Leadership Awards Reception

Please Join Us in Honoring

Alan B. Siskind, PhD, LCSW Andrew Solomon, PhD Phillip A. Saperia, MAT Former CEO, JBFCS Author, Far From the Tree CEO, The Coalition of Independent Clinical Practice and The Noonday Demon, Behavioral Health Agencies “Founders Award” Winner of the “Advocacy Award” National Book Award, and Professor of Clinical Psychology, Columbia University “Humanitarian Award” Guest Speaker

SAVE THE DATE Wednesday, May 20, 2015 5:30 PM - 8:30 PM NYU Kimmel Center - Rosenthal Pavilion, 10th floor

60 Washington Square South, New York, NY 10012

Please contact Ira Minot with any questions at [email protected] or (570) 629-5960 AUTISM SPECTRUM NEWS ~ WINTER 2015 www.mhnews-autism.org PAGE 23

Fiddle from page 8 adults living with autism, including res- idential programs, employment training innovative transition, employment, and for students in transition, health/wellness recreational programs that benefit thou- initiatives, music and art programs, hiking sands of people in Florida and internation- and equestrian activities, as well as social/ ally. Together, we look forward to address- relationship opportunities. The Founda- ing additional needs including housing.” tion has pioneered much-needed resource CARD and The Daniel Jordan Fiddle materials that address critical needs and Foundation share a joint vision of creating are offered free of charge to the public, in- and expanding replicable models and op- cluding booklets on topics such as Autism portunities for adults living with autism to and Epilepsy, Autism and Faith, a hand- have the best lives possible for generations book for college students on the spectrum, to come. and a pocket-size travel guide. Dr. Alessandri explains that the DJFF Linda J. Walder is a leading national endowment is especially crucial since advocate and has been instrumental in de- CARD’s Department of Education fund- veloping public policy that addresses the ing does not provide for serving adults needs of all people living with autism and who have left high school. The executive their families. director reports that the DJFF funding will There are over three million individuals allow CARD to explore more innovative Dr. Roger Jou, Dr. Kevin Pelphry, Linda J. Walder, living with autism today. It is estimated approaches to issues such as: Dr. Fred Volkmar, and Fred Fiddle at the Yale Child Study Center that over the next decade, 500,000 individ- uals will reach the age of 21 and “age out” • Employment, including education, challenges of full community inclu- late exploration, discussion, and action on of government-mandated programs. training, and mentorship for families sion for adults living with autism. a range of solutions for housing, employ- For more information about The Daniel who wish to explore microenterprise ment, health care, and legal issues.” Jordan Fiddle Foundation, visit: www.djfid- as an employment path for adults liv- • Creating workshops for families dlefoundation.org. For information about ing with autism. geared to legal, financial, and self-ad- The Daniel Jordan Fiddle Foundation Yale’s Center for Translational Develop- vocacy initiatives. was established in 2002 in honor and mental Neuroscience, visit: http://child- • Community-based leisure program- memory of Linda Walder’s own autistic studycenter.yale.edu/research/index.aspx\. ming, including peer-to-peer social Says Dr. Alessandri, “We are grateful to son Danny Fiddle, who passed away at To learn more about CARD and The opportunities, art programs, etc. The Daniel Jordan Fiddle Foundation for age nine. Since its inception, DJFF has Daniel Jordan Fiddle Foundation Transi- its generous gift to CARD. It will help sup- helped develop, advocate for, and fund tion and Adult Programs visit: www.um- • Developing long-term solutions to the port our existing programs and help stimu- innovative programs and resources for card.org/adults-asd/.

ABLE Act from page 10 amount that individuals can make as a gift op regulations that will guide the states and families. Further analysis is needed to someone else and not pay taxes (gift tax in terms of a) the information required to to understand more fully the size of this and families will be allowed to establish exclusion). The total limit over time that be presented to open an ABLE account; market and more about their needs for new ABLE savings accounts that will not affect could be made to an ABLE account will be b) the documentation needed to meet the savings and investment products. their eligibility for SSI, Medicaid and oth- subject to the individual state and their limit requirements of ABLE account eligibility er public benefits. The legislation explains for education-related 529 savings accounts. for a person with a disability; and c) the 10. How is an ABLE account different than further that an ABLE account will, with Many states have set this limit at more than definition details of “qualified disability a special needs or pooled trust? private savings, “secure funding for dis- $300,000 per plan. However, for individu- expenses” and the documentation that will ability-related expenses on behalf of des- als with disabilities who are recipients of be needed for tax reporting. An ABLE Account will provide more ignated beneficiaries with disabilities that SSI and Medicaid, the ABLE Act sets some No accounts can be established until the choice and control for the beneficiary and will supplement, but not supplant, benefits further limitations. The first $100,000 in regulations are finalized following a pub- family. Cost of establishing an account will provided through private insurance, Med- ABLE accounts would be exempted from lic comment period on proposed rules for be considerably less than either a Special icaid, SSI, the beneficiary’s employment the SSI $2,000 individual resource lim- program implementation. States will begin Needs Trust (SNT) or Pooled Income Trust. and other sources.” it. If and when an ABLE account exceeds to accept applications to establish ABLE With an ABLE account, account owners $100,000, the beneficiary would be sus- accounts before the end of 2015. will have the ability to control their funds 3. Am I eligible for an ABLE account? pended from eligibility for SSI benefits and, if circumstances change, still have oth- and no longer receive that monthly income. 7. Can I have more than one ABLE account? er options available to them. Determining Passage of legislation is a result of a series However, the beneficiary would continue which option is the most appropriate will of compromises. The final version of the to be eligible for Medicaid. States would No. The ABLE Act limits the opportunity to depend upon individual circumstances. For ABLE Act limits eligibility to individuals be able to recoup some expenses through one ABLE account per eligible individual. many families, the ABLE account will be a with significant disabilities with an age of Medicaid upon the death of the beneficiary. significant and viable option in addition to, onset of disability before turning 26 years 8. Will states offer options to invest the rather than instead of, a Trust program. of age. If you meet this criteria and are also 5. Which expenses are allowed by ABLE savings contributed to an ABLE account? receiving benefits already under SSI and/ accounts? This article was reprinted with per- or SSDI, you are automatically eligible to Like state 529 college savings plans, states mission by National Disability Institute establish an ABLE account. If you are not a A “qualified disability expense” means any are likely to offer qualified individuals and can be found online at www.realeco- recipient of SSI and/or SSDI, but still meet expense related to the designated beneficia- and families multiple options to establish nomicimpact.org/News.aspx?id=460. the age of onset disability requirement, you ry as a result of living a life with disabil- ABLE accounts with varied investment would still be eligible to open an ABLE ities. These include education, housing, strategies. Each individual and family will About National Disability Institute account if you meet SSI criteria regard- transportation, employment training and need to project possible future needs and ing significant functional limitations. The support, assistive technology, personal costs over time, and to assess their risk National Disability Institute (NDI) is a regulations to be written in 2015 by the support services, health care expenses, fi- tolerance for possible future investment national nonprofit organization dedicated Treasury Department will have to explain nancial management and administrative strategies to grow their savings. Account to building a better economic future for further the standard of proof and required services and other expenses which will be contributors or designated beneficiaries are people with disabilities. The first nation- medical documentation. You need not be further described in regulations to be devel- limited, by the ABLE Act, to change the al organization committed exclusively to under the age of 26 to be eligible for an oped in 2015 by the Treasury Department. way their money is invested in the account championing economic empowerment, ABLE account. You could be over the age up to two times per year. financial education, asset development of 26, but must have the documentation of 6. Where do I go to open an ABLE account? and financial stability for all persons with disability that indicates age of onset before 9. How many eligible individuals and fam- disabilities, NDI affects change through the age of 26. Each state is responsible for establish- ilies might benefit from establishing an public education, policy development, ing and operating an ABLE program. If a ABLE account? training, technical assistance and innova- 4. Are there limits to how much money can state should choose not to establish its own tive initiatives. NDI and its Real Economic be put in an ABLE account? program, the state may choose to contract There are 58 million individuals with dis- Impact (REI) Network have helped more with another state to still offer its eligible abilities in the United States. To meet the than 2.3 million people with disabilities re- The total annual contributions by all par- individuals with significant disabilities the definition of significant disability required ceive nearly $2.3 billion in tax refunds and ticipating individuals, including family opportunity to open an ABLE account. by the legislation to be eligible to establish credits. To learn more, visit www.reale- and friends, is $14,000. The amount will Now that President Obama has signed an ABLE account, the conservative num- conomicimpact.org. Engage with NDI on be adjusted annually for inflation. Under the ABLE Act, the Secretary of the De- ber would be approximately 10 percent of Facebook: RealEconImpact or follow NDI current tax law, $14,000 is the maximum partment of Treasury will begin to devel- the larger group, or 5.8 million individuals on Twitter: @RealEconImpact. PAGE 24 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2015

Success from page 13 and finance into each participant’s every helps her clients discover the personal and References day. Individuals create a handbook that professional goals that best match their Whether a person lives on their own, or as outlines a customized plan utilizing their interests and abilities. When someone in Executive Function. (2014, January 1). Retrieved part of a family, they need to practice how skills for their own paths to success. For her own family was diagnosed with an December 15, 2014, from www.developingchild. to shop, how to pay and how to budget. example, as one is hired and given more re- Autism Spectrum Disorder, Debra learned harvard.edu/key_concepts/executive_function The group learns how to write a check, sponsibility, their handbook acts as a guide first-hand what it meant to guide someone manage income and pay bills. By filling and reminds them of the importance of es- through life’s challenges and how import- Jimenez II, R., & Greenberg, A. (2014, April out a budget sheet, participants track their tablishing a routine for better life control. ant the right team of professionals can be 1). Identifying Employment Opportunities and income, track their expenses such as food, As a frame of reference for continuous suc- in achieving success. Today, she utilizes her Providing Support. Autism Spectrum News. clothes, bills and leisure, and also keep re- cess, individuals take the results of these past experiences to help her clients realize cords of their spending. They learn to un- experiences and remain empowered in their potential and develop the executive Roux, A., Shattuck, P., Cooper, B., Anderson, derstand their fixed expenses and utilize their everyday lives beyond the Spectrum function skills needed in order to succeed K., Wagner, M., & Narendorf, S. (2013). Post- key resources for saving money. Strategies Workshop. in their personal lives, as well as in the pro- secondary Employment Experiences Among The fourth and final module is Fit for fessional workplace. She believes that col- Young Adults With an Autism Spectrum Disor- Life, which integrates the combined skills Debra Solomon is a New York Univer- laboration and involvement in group inter- der. Journal of the American Academy of Child of time management, organization, career sity certified Life and Career Coach, who ventions are essential for this development. & Adolescent Psychiatry, 52(9), 931-939.

Scores from page 18 One significant finding from their study on behalf of treatment providers or families. ations for the Systematic Analysis and Use was that relatively short data series are be- of Single-Case Research. Education and has previously been specified as a require- ing collected by researchers, with recent For further information please contact Treatment of Children, 35(2), 269–290. ment for meta-analysis publication by the studies reporting fewer data points than Monica E. Carr, Doctoral Researcher, doi:10.1353/etc.2012.0011 APA Taskforce on Statistical Inference older studies. Behavioral challenges were Monash University, Australia, at mebar4@ (1999). In addition, the earlier statistical task- described for many participants, and the student.monash.edu. Howlin, P. (2008). Redressing the balance in force emphasized the importance of under- authors argued that collecting a greater autism research. Nature clinical practice Neu- standing how a given statistical measure is number of data points presents researchers References rology, 4(8), 407. doi:10.1038/ncpneuro0860 calculated, and how to interpret the statistic. with a significant ethical dilemma. Accord- Despite this debate, the ASD community of ingly, the authors reported that in future, Baer, D. M., Wolf, M. M., & Risley, T. Kratochwill, T. R., Hitchcock, J. H., Horner, stakeholders require information describing SCD data for participants with ASD may R. (1968). Some current dimensions of R. H., Levin, J. R., Odom, S. L., Rindskopf, evidence based best practice immediately. It not be well suited to complex treatment applied behavior analysis. Journal of D. M., & Shadish, W. R. (2013). What is of critical importance to identify potential effect calculations that require larger vol- Applied Behavior Analysis, 1(1), 91–7. Works Clearinghouse Procedures and treatments that may in fact cause harm, and umes of data points. doi:10.1901/jaba.1968.1-91 Standards Handbook (Version 3.0). in the best interests of all parties to avoid se- Percentage of All Nonoverlapping Data lecting treatments that may be ineffective. (PAND) (Parker, Hagan-Burke, & Vannest, Carr, M., E., Anderson, A., Moore, D. W., Lovaas, O. I. (1987). Behavioral Treatment The Percentage of Nonoverlapping Data 2007), and Nonoverlap of All Pairs (NAP) & Evans, W., H. (2014). How should we and Normal Educational and Intellectual (PND) (Scruggs, Mastropieri, & Casto, (Parker & Vannest, 2009) was subsequent- determine treatment effectiveness with Functioning in Young Autistic Children, 1987) effect size calculation has been iden- ly compared to PND. Although PAND re- single-case design research for participants 55(1), 3–9. tified as the most frequently adopted meth- ceived favorable feedback in the broader with autism spectrum disorder? Review od of calculating a treatment effect score educational psychology literature and has Journal of Autism and Developmental Dis- Maggin, D. M., O’Keeffe, B. V., & John- in SCD research, with a recent review of appeared recently in several published sys- orders. doi:10.1007/s40489-014-0030-9 son, A. H. (2011). A quantitative synthesis published meta-analyses reporting that this tematic reviews conducted with students of methodology in the meta-analysis of sin- method was applied in 47 of the 84 (55%) with disabilities, Carr and colleagues re- Carr, M. E. (2014). A sensitivity analysis gle-subject research for students with disabil- effect sizes that were reported (Maggin, ported that PAND was suitable for only of three nonparametric treatment effect ities: 1985–2009. Exceptionality, 19(2), 109– O’Keeffe, & Johnson, 2011). PND has been 23 of the 38 studies. Mean treatment effect scores for single-case research for par- 135. doi:10.1080/09362835.2011.565725 criticized in the literature on the grounds that scores for the self-management interven- ticipants with autism. Review Journal of it is reliant on a single extreme data point tion data resulted in PND 78.8%, PAND Autism and Developmental Disorders. National Standards Report. (2009). Na- in baseline, lacks sensitivity as calculated 92.7% and NAP 93.2%. Interpretation of doi:10.1007/s40489-014-0037-2 tional Autism Center. National Autism scores approach 100%, and confidence in- derived scores is currently not a straightfor- Center, Randolph MA. tervals cannot be calculated. In recent years, ward procedure. Using the available scales CDC MMWR. (2014). Prevalence of au- alternate calculation methods have been de- developed by the original authors for each tism spectrum disorder among children Parker, R. I., Hagan-Burke, S., & Vannest, veloped to address these concerns. method respectively, Carr and colleagues aged 8 years - autism and developmental K. (2007). Percentage of all non-overlap- Carr and colleagues (2014) investigated reported that PND described self-manage- disabilities monitoring network, 11 sites, ping data (PAND): An alternative to PND. the suitability of SCD data for treatment ment interventions as an effective treatment United States, 2010. Morbidity and mortal- The Journal of Special Education, 40, 194– effect calculations using examples drawn (the second highest category), and NAP as ity weekly report. Surveillance summaries 204. doi:10.1177/00224669070400040101 from peer-reviewed published behavior a strong treatment (the highest category). (Washington, D.C. : 2002), 63(2), 1–21. therapy research specifically for individu- PAND was omitted from their comparison Retrieved from http://www.ncbi.nlm.nih. Parker, Richard I, & Vannest, K. (2009). als diagnosed on the spectrum. Self-man- as an interpretation scale was not proposed gov/pubmed/24670961 August 1, 2014. An improved effect size for single-case agement was selected to represent an by the original authors. research: nonoverlap of all pairs. Behav- established treatment, and exercise to rep- Also of concern, the tentative interpre- FDA. (2014). Beware of False or Mislead- ior therapy, 40, 357–67. doi:10.1016/j. resent an emerging treatment, as described tation scale that has been developed for ing Claims for Treating Autism. Consumer beth.2008.10.006 in the National Standards Report (2009). NAP uses bandings that were noted to be Health Information, 1–2. Retrieved from The aim of their research was twofold: inconsistent to those of the widely em- http://www.fda.gov/downloads/forcon- Roth, M. E., Gillis, J. M., & DiGennaro first to determine if the data may be suit- ployed PND metric. Carr and colleagues sumers/consumerupdates/ucm394800.pdf Reed, F. D. (2013). A Meta-Analysis of Be- able for a more complex regression based reported that until these issues are further December 1, 2014 havioral Interventions for Adolescents and treatment effect calculation; and second researched, interpretation of newer calcula- Adults with Autism Spectrum Disorders. to compare three calculation methods that tion methods should be treated cautiously. Geller, L., & Greenberg, M. (2010). Man- Journal of Behavioral Education, 23(2), can be performed by hand. The logic be- In particular, they found that newer methods aging the Transition Process From High 258–286. doi:10.1007/s10864-013-9189-x hind this approach was that calculations may report a greater strength of treatment School to College and Beyond: Challenges that do not require extensive training or effect score when compared to PND. Their for Individuals, Families, and Society. So- Scruggs, T. E., Mastropieri, M. A., additional software applications to per- report stressed that this may be potentially cial Work in Mental Health, 8(1), 92–116. & Casto, G. (1987). The quantitative form may mean that teachers or clinicians misleading, as readers may perceive studies doi:10.1080/15332980902932466 synthesis of single-subject research: in underfunded communities, or remote as more effective should a newer treatment Methodology and validation. Remedi- locations, could access and interpret treat- effect score be adopted, and argued that this Horner, R. H., Swaminathan, H., Sugai, al and Special Education, 8(2), 24–33. ment reports with greater ease. in turn may contribute to false expectations G., & Smolkowski, K. (2012). Consider- doi:10.1177/074193258700800206

Risk from page 20 biomedical education. Structured around 6,600 primary and specialty care phy- School of Medicine at Mount Sinai, seven member hospital campuses and a sicians, 12‐minority‐owned free‐stand- which is ranked among the top 20 med- About the Mount Sinai Health System single medical school, the Health System ing ambulatory surgery centers, over ical schools both in National Institutes has an extensive ambulatory network and a 45 ambulatory practices throughout the of Health funding and by U.S. News & The Mount Sinai Health System is an range of inpatient and outpatient services-- five boroughs of New York City, West- World Report. integrated health system committed to from community‐based facilities to tertiary chester, and Long Island, as well as 31 For more information, visit http://www. providing distinguished care, conducting and quaternary care. affiliated community health centers. mountsinai.org, or find Mount Sinai on transformative research, and advancing The System includes approximately Physicians are affiliated with the Icahn Facebook, Twitter and YouTube. AUTISM SPECTRUM NEWS ~ WINTER 2015 www.mhnews-autism.org PAGE 25

Evaluating from page 17 from individualized instruction may be a individual and dyad instruction. This is Favell, J.E., Favell, J.E., & McGimsey, good indicator of whether or not fading an important first step, as learners need to J.F. (1978). Relative effectiveness and ef- generalization of skills (Koegel, Egel, & staff ratios is practical at that time. be able to demonstrate and perform tasks ficiency of group versus individual train- Dunlap), eliminate the potential for obser- when they are not provided with individ- ing of severely retarded persons. American vational learning (Keel & Gast 1992), and Melmark’s Focus ual attention. Furthermore, it will provide Journal of Mental Deficiency, 83, 104-109. require far more instructional time than do information on whether behaviors that can group formats (Favell, Favell, & McGim- The research team at Melmark is com- interfere with tasks are more prevalent in Kamps, D., & Walker, D. (1990). A com- sey, 1978). mitted to figuring out an efficient way to learners with autism in individual or group parison of instructional arrangements for Research in this area indicates that small address this clinical need and has designed environments. Finally, it will provide data children with autism served in a public group formats are as effective as (Kamps an instructional protocol to assess a learn- on whether performance suffers in group school setting. Education and Treatment of & Walker, 1990) and more efficient than er’s performance in individual and group contexts. The latter assessment compares Children, 13, 197-216. (Biberdorf & Pear, 1977) one-to-one in- instruction. Initially, research focused on differential acquisition of new instruction- struction, with comparable rates of chal- examining the learner’s differential per- al targets in individual and dyad instruc- Kamps, D., Walker, D., & Maher, J. (1992). lenging behavior across instructional formance in individual and dyad learning tion. These data are important to ascertain Academic and environmental effects of arrangements (Kamps & Walker, 1990). situations with mastered skills. Ultimate- whether learners with autism truly need small group arrangements in classrooms Data from a study by Kamps et al (1992) ly, this work will be extended to examine individual instruction to learn new skills. for students with autism and other develop- indicates that individuals with a history differential acquisition of new material in It is hoped that such an instrument could mental disabilities. Journal of Autism and of one-to-one instruction can successful- group and individual learning contexts. be used to support the learner’s readiness Developmental Disorders, 22, 277-293. ly be transitioned to small-group formats Perhaps the most exciting element of the to be weaned from individual instruction across several curriculum areas with few protocol is that it enables educational teams and to participate in group learning. As the Keel, M.C., & Gast, D.L. (1992). Small- problems. McDonnell et al (2006) demon- to make decisions about learner readiness ability to participate in group instruction is group instruction for students with learn- strated equivalent learning in embedded for group instruction on the basis of objec- essential for academic and vocational envi- ing disabilities: Observational and inci- and group instructional formats for middle tive and individual data. The focus of the ronments, assessing this skill is part of our dental learning. Exceptional Children, 58, schoolers with developmental disabilities. assessment will be to identify the learners’ clinical obligation to prepare learners with 357-368. There are many questions about learning skills in core areas relevant to success in autism for their next environments. in groups that remain unanswered. Some group learning environments. Variables as- Koegel, R., Egel, A., & Dunlap, G. (1980). novel work by Taylor and colleagues seeks sessed include not only the ability to learn For more information on the assess- Learning characteristics of autistic chil- to isolate the components of the listening re- new material, but also: ment tool described, please contact Helena dren. In W. S. Sailor, B. Wilcox, & L.J. sponse that may facilitate learning observa- Maguire at [email protected] or Brown (Eds.), Methods of instruction with tionally in group instructional contexts. Tay- • Levels of engagement Mary Jane Weiss at [email protected]. severely handicapped students. Baltimore: lor, DeQuinzio, and Stine (2012) evaluated Helena Maguire, MS, BCBA, is Senior Paul H. Brooks. the components of responses that may fa- • Rates of challenging behavior Director of School Services at Melmark cilitate observational learning in group con- New England. Mary Jane Weiss, PhD, BC- McDonnell, J., Polychronis, S., Reisenland, texts. They found that teaching a monitoring • Maintenance of mastered targets in BA-D, is Executive Director of Research at T., Jameson, M., Johnson, J. W., Kercher, K. response increased observational learning. individualized and group instructional Melmark. Frank L. Bird, MEd, BCBA, is (2006). Comparison of one-to-one embed- Challenging assumptions about the ben- arrangements Chief Clinical Officer of Melmark, Inc. ded instruction in general education classes efits of 1:1 instruction, Melton, Hansen, The mission of Melmark is to serve chil- with small group instruction in special ed- Mayer, and Kenyon (2013) presented data Successful candidates for group instruc- dren, adults and their families affected by ucation classes. Education and Training in that demonstrated the superiority of group tion should exhibit: a broad range of intellectual disabilities. Developmental Disabilities, 41, 125-138. instruction for the acquisition of new We provide evidence-based educational, skills. In their examination of seven learn- • Stable patterns of independent re- vocational, clinical, residential, healthcare Melton, B., Hansen, M., Maher, J., & Ken- ers with autism, they found that 4 of 7 ac- sponding and rehabilitative services, personally de- yon, S. (2013). A Comparison of Group and quired skills more rapidly when taught in a signed for each individual in a safe envi- One-to-One Instructional Arrangements group context. The other three participants • Maintenance of learned skills ronment of warmth, care and respect. www. with Students with ASD. Presentation on had equivalent rates of acquisition across melmark.org – www.melmarkne.org. Symposium at Association for Behavior conditions. These data are interesting, and • High levels of engagement Analysis Annual Conference. Minneapo- await replication. References lis, MN. May, 2013. While the majority of past research has • Low rates of challenging behavior focused on students’ ability to acquire new Biberdorf, J.R., & Pearm J.J (1977). Two- Taylor, B.A., DeQuinzio, J.A. & Stine, J. skills in small-group arrangements, a stu- • Low rates of stereotypy across conditions to-one versus one-to-one student-teacher (2012). Increasing Observational Learning dent’s ability to maintain independent re- ratios in the operant verbal training of re- of Children with Autism: A Preliminary sponding on mastered targets when transi- The initial assessment compares differ- tarded children. Journal of Applied Behav- Analysis. Journal of Applied Behavior tioned to a dyad instructional arrangement ential performance of mastered skills in ior Analysis, 10, 507. Analysis, 45 (4), 815-820.

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 and Vocational Issues, College Coaching and 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: 2015 - 1/25, 2/22, 3/22, 4/26, 5/17, 6/14 Westchester Arc The Gleeson-Israel Gateway Center 265 Saw Mill River Road (Route 9A) Hawthorne, NY 10532 PAGE 26 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2015

Brains from page 4 to the donor’s family, is permitted by most which an Autism BrainNet coordinator will brain research and to register. religions, and does not alter funeral ar- work with medical personnel to retrieve the © 2014 AHA Association. Further repro- showing that they want to make a differ- rangements or medical treatment. Further, brain tissue and transport it to a research duction of this article is prohibited without ence in the mission to solve autism. The It while advance registration is encouraged, center. Donor families will be treated with express written permission of AHA. This ar- Takes Brains website covers many issues it is not required and it is not binding. In all respect and compassion, and provided with ticle was reprinted with permission and was of concern to potential donors. Visitors to cases, the donation process is initiated by a continuing support and information. originally published in the Fall 2014 issue the site will learn, for example, that brain call to the AutismBrainNet hotline number Please visit www.takesBrains.org and of AHA Association’s “On The Spectrum.” tissue donation does not involve any cost immediately upon a donor’s death, after www.autismbrainnet.org to learn about For more information, visit www.ahany.org.

CPRT from page 11 unbiased ratings of teachers’ CPRT use. training accordingly. at the Child and Adolescent Services Re- In the project’s first year, we found that Another example of how training can search Center of University of California, 2. Make Instructions Clear and Appro- teachers consistently implement anteced- be adjusted relates to providing feedback. San Diego. Sarah Rieth, PhD, BCBA-D, priate: The teacher provides clear and ent components such as gaining student Recognition of appropriate student behav- is Assistant Professor at the Child and developmentally appropriate instruc- attention and providing clear instruc- iors can come in the form of contingent Adolescent Services Research Center, tions that are easy for the student to tions. Furthermore, teachers typically did consequences (such as verbal praise) and/ Department of Child and Family Devel- understand and are at, or just above, well with session preparation and provid- or reinforcement that is tangible and direct- opment, San Diego State University. Au- her developmental level. ing consequences contingently. This sug- ly related to the activity or behavior. Teach- byn Stahmer, PhD, BCBA-D, is Associate gests that teachers may find training that er struggles with implementing these con- Professor, Department of Psychiatry at 3. Provide a Mixture of Easy and Diffi- targets the CPRT components that focus sequence strategies is an area of concern. the MIND Institute, University of Cali- cult Tasks: Rather than consistently on maximizing student motivation, such Independent observers found that though fornia, Davis. increasing task difficulty, the teacher as shared control strategies and providing teachers excelled at providing contingent provides a balance of easy and diffi- appropriate tangible consequences (re- consequences (usually praise), they did not References cult tasks to maintain previously mas- inforcement), most useful because these often provide tangible reinforcement in ei- tered skills, and to keep motivation are the areas that appear most challeng- ther one-on-one or group settings. This is National Standards Project (2009). Nation- high and frustration low. ing. By way of example, difficulties that in keeping with coaches’ reports that many al Standards Report. Randolph, MA: Na- teachers have reported with the shared teachers had difficulty with determining tional Autism Center. 4. Share Control with the Student: The control and reinforcement strategies and appropriate consequence strategies for stu- teacher follows the student’s lead to her possible solutions to these difficulties dents, particularly for those who seemed Odom, S. L., Collet-Klingenberg, L., Rogers, choice of activities and materials, takes that could be the focus of additional train- intrinsically motivated to complete typi- S. J., & Hatton, D. D. (2010). Evidence-based turns with the student, and incorporates ing are discussed below. cal classroom activities. This implies that practices in interventions for children and preferred materials into activities. There are four parts to the shared con- future training should focus on identifi- youth with autism spectrum disorders. Pre- trol aspect of CPRT: providing choices, cation of which students require tangible venting school failure: Alternative education 5. Use Multiple Exemplars: The teacher taking turns, following student interest, reinforcement and maintaining teachers’ for children and youth 54(4), 275-282. presents opportunities to respond that and using preferred materials and ac- implementation of tangible consequences require the student to attend to multi- tivities in the teaching interaction. Data for those students. Further analyses will Reed, S., Stahmer, A., Schreibman, L., & ple aspects of the learning materials to from independent observers indicates that explore the student characteristics that ne- Suhrheinrich, J. (in press). Examining the give a correct response, and the teach- in one-on-one settings, shared control cessitate a high frequency of tangible rein- use of multiple cues as a necessary compo- er varies the form and content of cues is crucial to cultivating student engage- forcement delivery. nent of pivotal response training. Journal given to students. ment. Specifically, teachers’ use of turns Overall effectiveness of and satisfaction of Applied Behavior Analysis. and a greater number of choices is cor- with the CPRT training program has been Consequence Components related with higher student engagement very positive. Teachers enjoy the strate- Reed, S., Stahmer, A., Suhrheinrich, J., & (Vejnoska, Rieth, Suhrheinrich, Wang, & gies and see them working with students. Schreibman, L. (2013). Stimulus overselec- 6. Provide Direct Reinforcement: The Stahmer, 2015). Teachers, however, have The fact that teachers have difficulty im- tivity in typical development: Implications teacher should provide reinforcement expressed to their coaches that it is diffi- plementing certain components of CPRT for teaching children with autism. Journal that is naturally or directly related to cult to implement certain shared control indicates that adapting evidence-based of Autism and Developmental Disorders. the activity or behavior. strategies, such as incorporating preferred practices for use in the classroom is an materials when students in a group had ongoing process. The implementation is- Rieth, S. R., Schreibman, L., Stahmer, A. 7. Present Contingent Consequences Im- highly individualized preferences. For ex- sues surrounding group activities and stu- C., Suhrheinrich, J., Kennedy, J., & Ross, mediately: The teacher should present ample, a common academic skill taught in dent characteristics illustrate the need for B. (2013). Identifying critical elements of consequences immediately, and based a group setting is counting. When using continued partnerships between research- treatment: Examining the use of turn tak- on the student’s response. CPRT, we may encourage teachers to pro- ers and teachers to help make CPRT more ing in autism intervention. Focus on Au- vide pictures of students’ favorite cartoon useful for teachers. Additionally, further tism and Other Developmental Disabili- 8. Reinforce Appropriate Behaviors: By characters to count, instead of counting research should investigate the influence ties, OnLineFirst. rewarding not only correct responses, blocks or plastic bears. Teachers found that adaptations to shared control and but also goal-directed attempts toward it difficult, however, to provide charac- consequence strategies have on student Stahmer, A., Collings, N. M., & Palinkas, correct responses. ter pictures catered to every student’s in- engagement. Despite these growing pains, L. A. (2005). Early intervention practic- dividual preferences. One solution is to 100% of teachers who completed training es for children with autism: Descriptions When all eight components are used provide a choice between a limited set of reported being satisfied with the quality from community providers. Focus on Au- within one teaching interaction, CPRT is popular characters such that student pref- of training they received. Furthermore, tism & Other Developmental Disabilities, being implemented effectively. erence is involved in the activity but is 97% of teachers said they were satisfied 20(2), 66-79. The effectiveness of the complete also balanced with feasibility. Similarly, with their ability to use CPRT with their CPRT program is being tested in our cur- many teachers incorrectly believed that students. To put it in the words of one of Stahmer, A., Suhrheinrich, J., Reed, S., rent research study, which includes 108 using preferred materials required the the teachers who completed CPRT train- Bolduc, C., & Schreibman, L. (2011). teachers randomly assigned to receive creation of novel materials rather than ing, “This program provides a fresh per- Classroom Pivotal Response Teaching: A training and coaching in CPRT. As part incorporation of existing materials and spective on ABA as it simplifies the most Guide to Effective Implementation. Guil- of the training, CPRT coaches rate how activities that are popular with students. effective evidence based strategies for ford Press. well and how consistently teachers use For instance, when working on reading teaching children with autism in individ- the components of CPRT in their class- comprehension skills, instead of reading ual and group settings and gives that to Suhrheinrich, J., Stahmer, A., Reed, S., rooms. In order to meet implementation The Polar Express and utilizing materials the teacher in a nice, easy to use package. Schreibman, L., Reisinger, & Mandell. criteria, teachers must skillfully perform that most students generally prefer, such CPRT would benefit teachers in all areas, (2013). Implementation challenges in each component for 80% or more of the as shaving cream as pretend snow, some including those teaching only neurotypi- translating pivotal response training into teaching interaction. Of the 58 teachers teachers felt the need to create individu- cal children!” community settings. Journal of Autism and trained thus far, coaches report that 75% alized reading comprehension activities Developmental Disorders. of teachers have met criteria for correct with teacher-made stories and worksheets For more information about Class- use of CPRT. This is an improvement based on their students’ favorite charac- room Pivotal Response Teaching please Vejnoska, S., Rieth, S., Suhrheinrich, J., from previous studies in which teachers ters. Because of this, fewer teachers have contact Renee Herman (858) 966-7703 Wang, T., & Stahmer, A. (Submitted). demonstrated difficulty implementing met fidelity criteria on preferred mate- x 3842 or [email protected] or visit CPRT Fidelity of Implementation: An Ex- PRT strategies consistently (Suhrheinrich rials in comparison to the other shared www.classroomprt.org. amination of Antecedent and Consequence et al., 2013). In addition to the ratings control strategies. Thus, it is worthwhile Sarah Vejnoska, BA, is Research As- Strategies in Relation to Student Active from the coaches, expert independent ob- to continue to collaborate with teachers sistant, Janice Chan, MA, BCBA, is Re- Engagement. Poster submitted to the In- servers watch video samples of teachers to identify which strategies are the most search Associate, and Jessica Suhrhein- ternational Meeting for Autism Research working with their students to provide beneficial and what is feasible, and adjust rich, PhD, is Assistant Adjunct Professor (IMFAR), Salt Lake City, UT. AUTISM SPECTRUM NEWS ~ WINTER 2015 www.mhnews-autism.org PAGE 27

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