UTISM PECTRUM EWS A YOUR TRUSTEDS SOURCE OF SCIENCE-BASED EDUCATION,N FALL 2018 INFORMATION, ADVOCACY, AND COMMUNITY RESOURCES VOL. 11 NO. 2 Staying Safe with Autism

Bullying and Youth with Disabilities and Special Health Needs

By StopBullying.gov venting and responding to bullying. These plans can provide additional services that may be necessary. Additionally, civil rights hildren with disabilities - such as laws protect students with disabilities physical, developmental, intel- against harassment. lectual, emotional, and sensory disabilities - are at an increased Creating a Safe Environment Crisk of being bullied. Any number of fac- for Youth with Special Health Needs tors - physical vulnerability, social skill challenges, or intolerant environments - Youth with special health needs - such as may increase the risk. Research suggests diabetes requiring insulin regulation, food that some children with disabilities may allergies, or youth with epilepsy - may re- bully others as well. quire accommodations at school. In these Kids with special health needs, such cases they do not require an Individualized as epilepsy or food allergies, also may be Education Program or Section 504 plan. at higher risk of being bullied. Bullying can However, schools can protect students include making fun of kids because of their with special health needs from bullying allergies or exposing them to the things and related dangers. If a child with special they are allergic to. In these cases, bullying health needs has a medical reaction, teach- is not just serious, it can mean life or death. ers should address the medical situation first before responding to the bullying. Ed- Creating a Safe Environment ucating kids and teachers about students’ for Youth with Disabilities special health needs and the dangers asso- ities. There are resources to help kids with Individualized Education Programs (IEPs) ciated with certain actions and exposures Special considerations are needed when disabilities who are bullied or who bully or Section 504 plans that can be useful in addressing bullying in youth with disabil- others. Youth with disabilities often have crafting specialized approaches for pre- see Bullying on page 20

The Link Between Autism and Suicide Risk

By Marina Sarris others thought about it, or tried to end their • Children with autism are bullied at a suicide was seven times higher in people Interactive Autism Network own lives.6 much higher rate than their unaffected with autism than in the general population Kennedy Krieger Institute A growing number of scientists want to brothers and sisters.15 Research shows in Sweden.13 know more about how this public health that both bullies and their victims have Research on suicide in autism is still in crisis affects people with a higher risk of suicidal thoughts and its relatively early stages. Some studies are r. A, a middle-aged chemist, disorder (ASD). Studies show that people attempts.16 either small – which is not ideal for mak- came to a Baltimore emer- with autism are at higher risk for suicidal ing broad conclusions – or focused only gency room after a suicide at- thoughts, plans, or actions than the gen- • People with autism have higher rates of on adults or people with Asperger’s Syn- tempt. He said he was “thor- eral public, although how much higher underemployment or unemployment drome, according to researchers who study Moughly depressed.” He had been fired after varies widely among the studies.5,7-14 The than the general population.17-19 youth with more severe forms of the dis- throwing a chair at his boss, not his first evidence that suicide is a critical issue in order.23 Asperger’s refers to autism spec- outburst at work. Doctors admitted him autism is “increasingly strong,” two re- • Youth and adults with autism have trum disorder in people who did not have to the hospital, where they became suspi- searchers concluded after analyzing 13 higher rates of depression and social significant speech and learning delays in cious of his rigidity, social awkwardness, studies about it.12 isolation than others.14,20-22 childhood. and trouble making eye contact. After “It’s shocking and sad,” said Alycia Hal- talking to his parents about his childhood, laday, PhD, of the Autism Science Founda- A 2015 study of adults with autism in Scouring Through Medical Records hospital psychiatrists settled on an unex- tion, in a 2018 podcast, “Sobering Statis- Northern California, for instance, found pected diagnosis. In addition to psychiat- tics on Suicide.” they had double the rate of depression and Some studies stand out for their size or ric and alcohol abuse problems, Mr. A. had anxiety, and eight times the rate of bipo- thoroughness, especially those using na- autism spectrum disorder, they said.1 Risk Factors for Suicide in ASD lar disorder, than adults who do not have tional registries or medical records. Researchers and doctors alike are focus- autism. They also were five times more In Sweden, researchers identified 54,000 ing on a link between autism and suicidal What’s behind these sobering statistics? likely to try to kill themselves. To put that people with autism using records from 1987 thoughts, plans, or actions. Suicide is the Some of the risk factors for suicide in the in perspective, about 1 in 56 people with through 2013, and compared them to sim- second leading cause of death for teenagers general population occur more frequently autism attempted suicide, compared to 1 ilar people who did not have autism. (Sci- and young adults in the United States and in people with autism, although scientists in 313 other adults, according to that study entists often use a comparison, or control, abroad.2-5 In the U.S. alone, almost 6,000 do not know for sure if these factors have by Kaiser Permanente.14 A different study

youth died by suicide in 2015; many, many the same influence in ASD.12 For example: found that found that the risk of death by see Suicide Risk on page 18

PERMIT NO. 137 NO. PERMIT

Effort, PA 18330 PA Effort, MONROE, CT MONROE,

460 Cascade Drive Cascade 460 U.S. POSTAGE PAID POSTAGE U.S.

Mental Health News Education, Inc. Education, News Health Mental ORGANIZATION NON PROFIT NON PAGE 2 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2018 Mental Health News Education Autism Spectrum News Board of Directors Editorial Board

Chair Cindy Alterson, PhD, BCBA, Principal of Devereux NY CARES Clinical Director, Devereux Advanced Behavioral Health-New York Debbie Pantin, MSW, MS Healthcare Management, CEO Outreach Joel Bregman, MD, Medical Director and Director of Psychiatry The Center for Autism Vice-Chair Joseph D. Buxbaum, PhD, Director Rachel A. Fernbach, Esq, Deputy Director and Assistant Seaver Autism Center - Icahn School of Medicine at Mount Sinai General Counsel, New York State Psychiatric Association Susan Cortilet-Jones, MS, LMHC, Integrative Wellness Coach for Adults Secretary Discovering Your World, Corp.

Yvette Brissett-André, MPA, Executive Director and CEO Stephen E. Freeman, LCSW Unique People Services The Freeman Group

Treasurer Lynda Geller, PhD, Founder, Spectrum Services A Cooperative of Independent Practices & Organizations, New York, NY Kimberly Williams, MSSW, President and CEO Vibrant Emotional Health Michael Gilberg, Esq. Attorney, NY/CT Members of The Board Ami Klin, PhD, Director Peter D. Beitchman, DSW, LMSW, Principal Marcus Autism Center Behavioral Health Consultation Harold S. Koplewicz, MD, President Constance Y. Brown-Bellamy, MPA, President and CEO Child Mind Institute Brown Bell Consulting Cecelia M. McCarton, MD, Founder and Executive Director Jonathan P. Edwards, LCSW, ACSW, M. Phil., Program Consultant The McCarton Foundation, The McCarton School (for Autism) New York City Department of Health and Mental Hygiene Judith R. Omidvaran Matthew Loper, CEO Autism Parent Advocate, New York Wellth Theresa Pirraglia, Co-Founder and Board Member Barry B. Perlman, MD, Legislative Chair FECA, The Foundation for Empowering Citizens with Autism New York State Psychiatric Association Howard Savin, PhD, Chief Clinical Officer First Children Services Jorge R. Petit, MD, CEO Coordinated Behavioral Care (CBC) Pat Schissel, LMSW, Executive Director and High Functioning Autism Association Keri Primack, CFP, Senior Financial Advisor, SVP Gerstein Fisher Alison Singer, President Autism Science Foundation Joshua Rubin, MPP, Principal Health Management Associates Richard Swierat, Executive Director ARC of Westchester Founding Chairman Fred Volkmar, MD, Professor Alan B. Siskind, PhD, LCSW

Executive Staff Linda J. Walder, Esq. Founder and Executive Director The Daniel Jordan Fiddle Foundation Ira H. Minot, LMSW, Founder and Executive Director Dianne Zager, PhD, Michael C. Koffler Professor in Autism David H. Minot, BA, Associate Director and Publisher Dyson College of Arts and Sciences, Pace University

Autism Spectrum News is a Quarterly Print and Online Publication of Mental Health News Education, Inc, a 501(c)(3) Nonprofit Organization All inquiries regarding advertising, subscriptions, sponsorships, and submitting an article should be directed to: David H. Minot, BA, Publisher (978) 733-4481 • [email protected] • 460 Cascade Drive, Effort, PA 18330 • www.mhnews-autism.org Mental Health News Education, Inc. does not endorse the views, products, or services contained herein. We are not responsible for omissions or errors. Mental Health News Education, Inc. is not responsible for articles submitted to us without the final approval of the organization’s Executive Director, CEO, or Public Relations Department. All articles and Advertisements are subject to final approval by our Editorial Board. We reserve the right to edit any article sent to us. Copyright © 2018 Mental Health News Education, Inc. All rights reserved. Content contained in this publication may be reproduced for one-time personal use. However, anyone wishing to reproduce and distribute any content from within this publication for purposes other than personal use must request this intention in writing directly to the publisher. Failure to do so will be in violation of the copyright held by this publication. AUTISM SPECTRUM NEWS ~ FALL 2018 www.mhnews-autism.org PAGE 3

Table of Contents Editorial Calendar

Staying Safe with Autism Winter 2019 Issue “Autism and the Transition to Adulthood” 1 Bullying and Youth with Disabilities and Special Health Needs Deadline: December 4, 2018 1 The Link Between Autism and Suicide Risk Spring 2019 Issue 4 A New Wave of Real Estate Options for Adults with Autism “Improving Communication Skills” Deadline: March 1, 2019 6 Bridging the Gap Between Police and Individuals with ASD

8 Online Dating and Summer 2019 Issue “Supporting Older Adults with Autism” 10 Literacy Supports for Learners with Autism Deadline: June 6, 2019 11 Adults with Autism Face a Unique Set of Dangers and Hazards Fall 2019 Issue 12 Autism Plus Wandering “Autism and Community Engagement” Deadline: September 5, 2019 13 Analyzing Health Informatics to Ensure Safety and Wellness

15 Reducing Disparities in Early Identification of ASD Interested in participating in an issue? Email [email protected] 16 Unique People Services Creating Community Connections

Advocacy for Autism Stay Connected with ASN Online 14 NYS Assemblyman Santabarbara’s Mission of Advocacy www.mhnews-autism.org Autism Spectrum NewsDesk @AutismSpectrumNews 17 Preparing the Field of Disabilities Services for Managed Care

19 New Biomarker Panel Could Accelerate Autism Diagnoses @AutismSpecNews

For over 10 years, Autism Spectrum News (ASN) has been providing a trusted source of science-based autism information, education, and quality resources in the community.

ASN is a nonprofit quarterly publication with an annual readership of over 100,000 in print and online made up of individuals with autism spectrum disorders, families and caregivers, educators, treatment professionals and service provider organizations across the country. ASN is an evidence-based publication with an Editorial Board that reviews all content in each issue to ensure that all information is safe and proven-effective.

Please Support the Autism Resources Advertised in This Issue!

AANE - Neurology Matters in Couples Therapy Concordia College New York NYIT Vocational Independence Program Achieve Beyond Daniel Jordan Fiddle Foundation Seaver Autism Center 25th Anniversary Luncheon AHRC New York City Felicity House Shrub Oak International School Behavior Therapy Associates First Place AZ Threshold Program at Lesley University Berklee Institute for Arts Education & Special Needs Mastermind Behavior Services Vista Life Innovations BE SAFE The Movie Melmark Westchester Jewish Community Services Center for Career Freedom MHS Assessments YAI Westchester Autism Conference Chimes International Montefiore Autism & Obsessive- When My Heart Joins the Thousand - A Novel Compulsive Spectrum Program PAGE 4 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2018

A Responsive, New Wave of Real Estate Options for Adults with Autism and for Special Populations

By Desireé Kameka In the broader community development Madison House Autism Foundation research, the Knight Foundation wanted to and Denise D. Resnik find out what attracts people to the place First Place AZ they live and described 10 top domains driving community attachment in its Soul of the Community report (2010). Interest- xciting new models for support- ingly in the 26 communities they studied, ive housing are emerging, chang- three specific elements rose repeatedly to ing the landscape and raising the the top: Social Offerings (places for people bar on dreams and expectations to meet each other and the feeling that peo- Efor the neurodiverse population. Far too ple care about each other), Openness (how many young adults are graduating from welcoming the community is to different high school to the couch. They are socially types of people), and Aesthetics (the phys- isolated, unemployed or underemployed, ical beauty of the community including the and disconnected from the community availability of parks and green spaces). (Roux, Rast, Rava, Anderson, & Shattuck, Using data from what impacts commu- 2015). Compounding the urgency of the nity outcomes in the and neu- situation are the nearly one million adults rodiverse population, we must create more with intellectual and/or developmental supportive housing opportunities for the disabilities (IDD) living with a caregiver diverse market segment of special popu- over age 60 (Braddock et al., 2017). lations—both in the number of supportive People with IDD or brain injuries, se- housing units and through a range of home niors and veterans all represent groups in Desireé Kameka Denise D. Resnik and service options. What we call these need of additional assistance and support different housing options with different options to live as independently as possi- • Participants enrolled in the two-year was not to make life so automated that it service delivery systems for people with ble and to thrive in their community. Group First Place Transition Academy, oper- could preclude someone from honing their high-, moderate- and low-support needs is homes are not meeting the demand and are ated by SARRC, benefit from the two- independent living skills before transition- still vague. no longer the only residential option for year Learn4IndependenceTM curriculum ing to their next place after First Place. adults with autism and others with IDD. of 32 semester-length courses focused A One-Size-Fits-All Approach Won’t Across the country, pioneering leaders and on independent living skills, helping NOTE: First Place-Phoenix is not a group Work – Identifying What Does parents are working with local communi- them integrate into the fabric of the home or a licensed congregate care or as- ties to create more options. Elements of a community as citizens, neighbors, em- sisted living facility. The property is not Whether their home is for a season or a viable marketplace that develops housing ployees and friends. designed for those with self-injurious or lifetime, members of special populations inspired by this population are forming and aggressive behaviors. should be given the opportunity to benefit the delivery of marketplace options cannot • The First Place Global Leadership In- from a full array of choices. IDD-inspired happen soon enough. stitute is a catalyst for advancing repli- Research Informing Important amenities and supports may include as- cable options - a center where families, Elements for Building Community sistive technology, transportation options, An Innovative Example: people with autism and thought leaders sensory-friendly and accessible design, First Place-Phoenix collaborate on housing solutions through The first study focusing on the residen- skill-building programs, community sup- training, education, research and public tial concerns of adults with autism and re- port navigators, planned social activities Using the knowledge gathered in 20 policy. The Institute is focused on 10 lated disorders was published in 2009. It and more. years of research, support from the Urban priority areas shaping where we go next was produced to advance the development Currently, we are unable to measure out- Land Institute and the expertise of more with more housing and community op- of replicable residential models offering comes of these newer, emerging models. than 100 collaborators, First Place-Phoenix tions for special populations. quality, affordable housing options within National databases that collect outcome represents a new residential prototype and the fabric of their communities. Opening data, such as the National Core Indicators, allows greater life choice based on individ- As a first new property, First Place-Phoe- Doors: A Discussion of Residential Op- do not accommodate non-Medicaid-funded ual needs and interests. nix is a pioneering property representing tions for Adults Living with Autism and options or track different types of housing Set in the heart of the urban region, the new ideas and innovation. It also illustrates Related Disorders (2009) was a collabo- in consumer-controlled models. With this $15.4 million, 81,000-square-foot First several of the design goals and guidelines rative project by the Urban Land Institute evolution of housing and support systems, Place-Phoenix property offers three prima- cited in Opening Doors (found in Exhibit Arizona, Southwest Autism Research & as well as ever-increasing demand, we must ry components: A on page 23), based on economic sen- Resource Center (SARRC), Arizona State define the marketplace of residential op- sibilities and the segment served. University’s Stardust Center for Afford- tions for neurodiverse populations by creat- • Neurodiverse residents of the 55 First First Place is designed for those with able Homes and the Family, and the ASU ing the foundational nomenclature for dif- Place Apartments enjoy a suite of ser- support needs and some form of function- Herberger Institute School for Design and ferent housing and service delivery models, vices and amenities, with all the benefits al communication. They have a desire to the Arts. The study explored market de- and track outcomes through quality of life of community-connected living: trans- live more independently and participate mand and concerns, financial frameworks, indicators. We must better equip public, pri- portation, healthcare, employment, con- more fully as part of the greater commu- residential models, and home design. vate, philanthropic and nonprofit sectors— tinuing education and recreation. nity through employment, lifelong ed- Opening Doors was a catalyst for the individually and collaboratively. So, what ucation, health and wellness, recreation launch of the Autism Housing Network is that next place? How is it structured— and interests of their choosing. Set in the (AHN), a project of the Madison House operationally, financially, culturally? How heart of Phoenix, First Place is within Autism Foundation, in response to barri- does the marketplace define and recognize walking distance of light rail and public ers identified in the study. AHN is the only what works for residents after they leave transit, in close proximity to supportive, online platform that offers a hub of hous- First Place? There is no “one size fits all” welcoming neighbors. ing information and connects a network solution. Not everyone is right for every Technology is prevalent throughout the of innovators with home seekers, project property. Do we try to create a prototype property, aiding in the security and safety starters and existing residential options. for everyone or nothing for all? Or do we of residents. It encompasses an electron- The AHN Housing Directory uses a set of develop options that respect diversity in ic keycard system, a resident information filters to describe different options, and the our population and offer more choices, just and communications platform, entertain- AHN’s Virtual Tour of Housing and Sup- like the general marketplace does? ment and recreational options, and vari- port Models video series describes 18 dif- Consider that we are today with hous- ous educational workshops, trainings and ferent models, both traditional and emerg- ing for special populations where senior meetings. It was a conscious choice not to ing. While AHN is an excellent starting housing started some 50 years ago. Then automate all home features allowing resi- resource to begin to define the market, re- consider all the choices those seniors can dents to walk into their homes and simply search is not yet available to share on what access from the opportunity to “repurpose” push buttons to turn on lights, raise blinds it takes to build an inclusive, successful, and adjust the thermostat. Our intention move-in-ready environment. see Real Estate on page 23 AUTISM SPECTRUM NEWS ~ FALL 2018 www.mhnews-autism.org PAGE 5 PAGE 6 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2018

Two Sides to the Safety Equation: Bridging the Gap Between Police and Individuals with ASD

By Emily Iland, MA, ET mental illness or substance abuse. Officers News stories highlight specific behaviors Autism Advocate and Consultant learn how the features of autism can affect that can lead to escalation for anyone: run- someone during an interaction. Most im- ning or fighting with an officer, reaching portantly, officers discover for themselves in their own pocket/waistband or reaching Given the heightened risk that individuals how to accommodate an individual with for an officer’s equipment. BE SAFE The with autism face when they have contact ASD during police encounters, whether Movie was created to reframe these prob- with the police, this article highlights two the person has wandered, needs help, or is lematic behaviors into four positive ones: valuable safety programs that bridge the a suspect. 1) Stay where you are when you meet the gap between police and those with autism An independent researcher studied the police; 2) Do exactly what the police tell to build mutual understanding and improve effectiveness of Experience Autism® you to do; 3) Make sure the police can see outcomes in a police encounter. during three training events, with a robust your empty hands; and 4) Keep your hands total sample size of 195 officers (Medina to yourself (don’t touch police equipment). edia outlets draw attention to del Rio, 2018). Results showed significant BE SAFE is a DVD that situations where things have increases in officers’ knowledge of core shows viewers what to expect and do in gone seriously wrong be- features of ASD, confidence to interact everyday police encounters ranging from tween police and community with persons with ASD, and perceived inadvertently breaking the law, to a traf- Mmembers. As the number of individuals practicality of providing accommoda- fic stop, to being mistaken for a suspect. with Autism Spectrum Disorder (ASD) tions. Officers also viewed the training as Actors with autism and related disabilities continues to grow, and more children than relevant to their work. This makes Experi- interact with real officers to model safe be- ever become adults, they may be at greater ence Autism® the only independently-val- havior. Viewers become familiar with po- risk for a police encounter compared to the idated, evidence-based police training in lice procedures, commands and a critical general population (Sobsey, 1994). When the country. Experience Autism® is avail- safety vocabulary of more than 100 words. all parties are unprepared for such an en- Emily Iland, MA, ET able to communities across the nation. Video modeling has an extensive evi- counter, the outcomes may be unsafe or dence base for teaching social skills (Re- even disastrous. simulation activities that help officers un- Training Youth and Adults with ASD ichow & Volkmar, 2010). In addition, BE derstand the communication, information SAFE is enhanced with evidence-based Training the Police processing, behavior, and fine motor diffi- The story does not end there. Training and promising practices to improve com- culties common to autism. the police is not enough. Features of autism prehension (Iland, 2011). These include The obvious solution is to train the po- It’s often difficult for officers to cor- may interfere with the ability to understand priming or “frontloading” key concepts lice to recognize and respond to people rectly identify an “invisible” disability. and follow commands as expected. Individ- and vocabulary; use of visual supports; with ASD. The Experience Autism® Pro- Experience Autism® simulations help offi- uals with disabilities may unwittingly esca- interviews to help with perspective-taking gram was created specifically for this pur- cers identify the pattern of differences that late an ordinary police encounter when they pose. This empathy-based program offers constitute autism and distinguish it from are not prepared and don’t know what to do. see Safety on page 24 AUTISM SPECTRUM NEWS ~ FALL 2018 www.mhnews-autism.org PAGE 7 PAGE 8 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2018

Online Dating and Neurodiversity

By Leslie A. Sickels, LCSW relationships occur at the same time as their one who shows interest in them. By being Clinical Social Worker peers, embarking on dating is often delayed taught about consent, boundaries, and self- Spectrum Services for neurodiverse individuals (Hénault, worth as it relates to dating, neurodiverse 2006). This translates into less experience individuals can be more empowered to in dating, interpersonal relationships, and disengage from people online who they are uch has been written about the understanding the progression of relation- not truly interested in pursuing. This may basic safety considerations of ships. Dating skills are primarily learned become problematic when an individual online dating, yet little re- through experience, exposure, or psycho- on the spectrum receives less replies and search has been conducted education. If an individual has not gained subsequently feels the need to communi- Mto understand the nuanced difficulties that in vivo relationship skills through friend- cate with anyone who responds, regardless may be present for individuals on the au- ships or past dating experiences, it is im- of interest or fit. Psychoeducation around tism spectrum who date online. A survey perative that therapists or parents provide interests, attraction, and desirable qualities by Roth and Gillis (2015) found the most psychoeducation on the social conventions of partners can help equip individuals on commonly reported online dating concern of dating. While this supports healthy rela- the spectrum to know what they are look- for individuals on the spectrum was relat- tionship development of any kind, it also ing for before they embark in online dating. ed to safety. Safety associated with online decreases the risk of a neurodiverse indi- dating typically refers to prescribed guide- vidual misunderstanding the social con- Deciphering Profiles lines such as “meet in a public place” and texts of online interactions. In addition to “do not disclose personal information,” better understanding standard relationship In the online dating world, there are but there are additional difficulties that development, previous experiences or psy- many covert communication styles that may be present for neurodiverse individ- choeducation may also make individuals signify everything from sexual proclivities, uals. These more specific safety concerns on the spectrum less vulnerable to negative to personal disclosures, to expectations for may result from lack of experience in rela- Leslie A. Sickels, LCSW intent online. By strengthening this under- the progression of a relationship. Many of tionships, difficulty understanding social standing and supporting skill development, these messages are subliminal and meant conventions, or perpetuating negative so- uals on the spectrum, and to better support individuals on the spectrum will better de- to signify something specific to interested cial experiences. Technology and written those who wish to successfully and safely code the nuances and meanings of profiles readers. When social context and limited communication make connecting online connect online. and written messaging from others. experience cloud the way an individual on increasingly accessible and appealing, and Another important component of psy- the spectrum is interpreting these profiles, more neurodiverse individuals turn to on- Past Experiences choeducation related to online dating is it could lead to unwanted involvement or line dating to form romantic connections. boundary setting, including saying “no” exposure to individuals or situations. While this may facilitate easier opportuni- Individuals on the spectrum tend to have to unwanted interactions. Since individ- In a similar regard, deciphering “fake ties for initial connection, it may also pose fewer romantic relationships that begin lat- uals on the spectrum typically have few- profiles” can be especially challenging for specific risks and dangers. This article er in life than their neurotypical counter- er positive social connections throughout individuals on the spectrum. Deciphering a aims to offer additional information about parts (Attwood, Hénault, & Dubin, 2014). life, they may hold the perspective that the landscape of online dating for individ- While the onset of puberty and interest in they need to make connections with any- see Dating on page 20 AUTISM SPECTRUM NEWS ~ FALL 2018 www.mhnews-autism.org PAGE 9 PAGE 10 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2018

Literacy Supports for Learners with Autism

By Mary Kate Ross, MS, SYC beliefs, and intentions. Typically, those and Lauren Tucker, EdD with autism have an impairment in theory Southern CT State University of mind, making it difficult to view things from different perspectives. Central coher- ence is the ability to draw together various n her article How People with Au- pieces of information in order to construct tism Think, (1995), meaning. Individuals with autism have an a high-functioning person with impairment in central coherence with ten- autism, describes her visual meth- dencies to focus on smaller details, rather Iod of thinking. Grandin retrieves words than the “bigger picture.” Impairments in through visualizations and movies within theory of mind and central coherence im- her mind. This type of thinking takes time pact reading for those with autism, particu- to process, often making abstract thoughts larly reading comprehension. challenging. The NRP detailed reading comprehen- Grandin’s explanation correlates with sion development for typical learners. research towards the evidence-based prac- However, having a weak theory of mind tice of utilizing visual supports to help and central coherence pose a barrier for individuals with autism. Hayes, Hirano, learners with autism. A reading profile con- Marcu, Monibi, Nguyen, and Yeganyan sisting of advanced word recognition and (2010) define visual supports as “cogni- weak comprehension is identified through- tive tools to enable learning and the pro- out the research on literacy development duction of language.” They further ex- in children with autism. (Turner, Reming- plain that these supports include “words, ton, & Hill, 2017; Braun, Austin, & Led- images, and tangible items to represent Reading Difficulties The NRP describes reading as an ac- better-Cho, 2017; Knight & Sartnin, 2014; both concrete and abstract real-world con- for Learners with Autism tive process that engages individuals in Nation, Clarke, Wright, & Williams, 2006). cepts” and aid in learning and language problem solving and various thinking pro- The following are examples that link to production. Visual supports are a part of The National Reading Panel (NRP) cesses. They emphasize that reading com- current research regarding reading difficul- an individual’s communication system (2000) is an organization that assesses dif- prehension is the gestalt to reading, and ties of learners with autism: that allows them to hold attention, reduce ferent approaches to reading instruction. It therefore, a challenge for learners with au- anxiety, make abstract thoughts concrete, identified five areas of reading: phonemic tism due to impairments in theory of mind • Difficulty with semantic knowledge and better express one’s thoughts (Rao and awareness, phonics, fluency, vocabulary, and central coherence. (Brown, Oram-Cardy, & Johnson, 2012) Gagie, 2006). They may include real ob- and comprehension. Dolores Durkin stat- Elisabeth Hill and Uta Frith explain the jects, photographs, line drawings, words, ed that comprehension is the “essence of core cognitive features for individuals Example: answering wh- questions related and static/dynamic and interactive dis- reading,” therefore it will be the focus of with autism. Theory of mind is the under- plays (Meadan et al., 2011). this article. standing of another person’s knowledge, see Literacy on page 25 AUTISM SPECTRUM NEWS ~ FALL 2018 www.mhnews-autism.org PAGE 11

Adults with Autism Face a Unique Set of Dangers and Hazards

By Karl Wittig, P.E. though they most likely have never even because it has been grossly extrapolated Advisory Board Chair heard of the autism spectrum, let alone re- to imply that autistics are incapable of Aspies For Social Success (AFSS) alize that their prospective targets are on empathy (a view which has been largely it. Second, they know to use the possibility discredited), it is far less of a stretch to of finding friends as an inducement, as op- conclude that such a deficit may actually he dangers and hazards of the posed to the usual offer of financial reward be responsible for their well-known chal- world that are faced by autis- for taking the risks incurred from engaging lenges in recognizing deception on the part tic children and adolescents are in illegal activities. As such, , of another person. This needs to be further very well known, and much has who are much less likely to fall for such investigated, as it could help better un- Tbeen said and written about them. Autistic a scam, will not be subjected to it nearly derstand this serious hazard that autistics adults, however, all too often face a variety as often as are autistics, who tragically fall so frequently encounter and thereby help of threats not frequently encountered by for it all too often. This is a prime example them to not fall victim to it. neurotypicals. I will be discussing these of dangers that specifically affect autistics Whatever the reason for these deficits, from the perspective of an adult autistic as a group which, as such, needs to be em- autistics need to be taught, as much as pos- who has been susceptible to them during phatically warned about so that they learn sible, that there are people in this world the course of his life and, as such, is able to recognize and, hopefully, not become who will deceive and take advantage of to recognize the dangers they can present victims of. Family members and friends, them given the opportunity, and how to to other autistics (I am not an autism pro- as well as teachers and professionals, who recognize such situations when they arise. fessional – these are strictly my personal have autistics in their lives also need to be Although the earlier example was used for views). I will also draw upon the many sto- made aware of such hazards and become its extreme consequences, there are many ries that I have heard over the years of my vigilant for them. other situations where the same consid- involvement with the autism community. erations apply. These can involve taking This issue, for me at least, is typified Karl Wittig, P.E. Deception and Exploitation financial advantage of an unsuspecting by a story I have heard at many autism victim or, as often happens with autistics, gatherings, on numerous occasions, and in partners. Of course, the autistic does not re- The main reason autistics are so much persuading them to do something that will various forms. It usually goes something alize that the package contains illicit drugs more susceptible to such schemes is their embarrass them for the entertainment of like this: a young person on the spectrum or other contraband, the legal consequenc- inability to recognize that the perpetrators others. For an autistic with known special is approached by strangers (perhaps ac- es for being caught with being very severe. are intentionally deceiving them and do interests or abilities, these can serve as in- quaintances from their schools or commu- A few things immediately strike me not have their best interests in mind. This ducements to lure them into disadvanta- nities) who present an attractive offer. In about these stories whenever I hear them. may very well be due to the impaired the- geous or dangerous activities as well; such exchange for delivering a package (usually First, the perpetrators of such schemes are ory-of-mind (i.e., ability to see things from interests can be used the same way that the of unspecified content) to a particular lo- somehow able to recognize autistics as be- the perspective of another individual) that prospect of friendship is. If the autistic is cation, they are invited to a party or gath- ing susceptible to them (in particular, their autistics are known to have. Although this academically talented, or has abilities ering with the prospect of meeting people, obliviousness to both the deliberate decep- notion is not well received or even accept- making friends, and even finding romantic tion and its potential consequences), even ed by many in autism community, mainly see Dangers on page 22 PAGE 12 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2018

Autism Plus Wandering

By Beth Arky families with wanderers reported their child Child Mind Institute is “never” or “rarely” able to communicate his name, address or phone number, either verbally or by writing or typing. hen Liane Kupferberg Car- But extremely verbal “high functioning” ter’s son Mickey began “es- children are a flight risk, too, because they caping,” as she calls it, around may also have accompanying diagnoses age 2, “he was greased such as language processing issues or anx- Wlightning,” she says. “I couldn’t take my iety, which can make it difficult for them eyes off him for an instant or he’d disap- to convey personal information in an un- pear - in malls, supermarkets, or in any derstandable, appropriate way to first re- public space.” sponders and others who might help them. As her son got older, things weren’t any Or they may just be so fixated on whatev- better at home. “He figured out how to un- er’s interesting them, they don’t answer to lock the front door and take off, so we had their name. to install an extra deadbolt lock,” says Car- ter, a Westchester County-based journalist Highly Stressful for Parents and advocate. “We put it out of reach - or what we thought was out of reach - all the Consider the case of Nadia Bloom, an way up at the top of the door. Then he fig- 11-year-old with Asperger’s who disap- ured out he could stand on a chair to reach peared while riding her bike, only to be the lock, so we also installed a loud chime made wandering an urgent priority. an ASD wander at some point, four times found waist-deep in an alligator-infested to alert us any time the door opened.” But up until recently, there was only more than their unaffected siblings. The Florida swampland. Incredibly, she suf- Back then, Carter had no idea that Mick- anecdotal evidence of the behavior. Now, behavior peaks at 4, but almost 30 percent fered only from bug bites and dehydration. ey, now 19 and diagnosed with an autism preliminary results from the first major of kids with an ASD between the ages of 7 Jeff Bloom, Nadia’s father, told reporters, spectrum disorder (ASD), was demonstrat- study on wandering, conducted online by and 10 are still eloping, eight times more “Our daughter is a nature lover. She went ing a behavior common among those on the Interactive Autism Network (IAN), than their unaffected brothers and sisters. on a bike ride and stopped and went off to the spectrum, who have an impaired sense provide advocates the hard data they’ve Nearly half of the respondents said a child take some pictures.” of danger. Called wandering or elopement needed to take action. had been missing long enough to cause sig- It’s no wonder that more than half of par- - aka bolting - it is terrifying to parents and nificant safety concerns, with 32 percent ents reported that wandering is the most (or other caregivers at best, tragic at worst. Data on Wandering calling the police. Two out of three reported among the most) stressful ASD behavior, Spurred by the increasingly frequent sto- their wandering child had a “close call” with ahead of self-injury, rigidity, aggression, ries of lost children being found dead, of- According to the responses from more a traffic injury, while almost a third said and meltdowns. Meanwhile, 62 percent ten drowned in ponds and creeks close to than 800 parents, roughly 50 percent of their child had a “close call” with drowning. their homes, the autism community has children between the ages of 4 and 10 with Another alarming statistic: 35 percent of see Wandering on page 21 AUTISM SPECTRUM NEWS ~ FALL 2018 www.mhnews-autism.org PAGE 13

Analyzing Health Informatics to Ensure Safety and Wellness

By Andrew Shlesinger, MSW, LICSW to inform better treatment by tailoring the over those intervals, in real-time, so effec- Director of Clinical Technology next day’s academic and clinical work. tive change can be made before the issue Melmark New England For example, if the data shows a client is becomes critical. likely to have more clinical behaviors fol- lowing a night with less than four hours of Well-Body Checks - The ubiquitous “well- s the amount of data recorded in continuous sleep, the behavior plan can be body check,” where staff check over the classrooms continues to expand, written to address that condition separate- body of the individual for any marks, bruis- so, too, does the opportunity for ly, possibly calling for a greater frequen- es, scratches, etc., is most often carried out individual, organizational, and cy of reminders, increased vigilance upon by marking up an outline image of the Asystemic improvements informed by that antecedents, or increased break opportuni- front and back of a body on paper forms. data. One area of increasing focus is the ties. Academically this data can guide the The major issues with this method is the collection and analysis of health and well- frequency of lesson delivery, the types of data is onerous to analyze across dozens of ness data, collectively known as health lessons taught, and frequency of breaks, as forms, and the data is duplicative because informatics. This article will give insights just a few examples. marks on the morning form, for example, into how the modern service organiza- Comprehensive sleep data is also criti- are often re-recorded over and over, form tion can leverage health informatics data cal for sharing with the client’s health care by form, until the issue resolves. like sleep, weight, well-body checks, and team. Doctors, psychiatry providers, pre- Collecting this data into a database elim- unusual incident tracking into real and scribers, and nurses highly value this data, inates both of these issues by keeping the meaningful improvements in student safe- which is often a key variable for informing data in one location and never duplicating a ty and wellness. treatment decisions. report from check to check. Melmark uses a database application that allows the user Common Measures of Weight and Diet - Weight is another key to record his or data on a display of the typ- Health and Wellness Andrew Shlesinger, MSW, LICSW factor in health and wellness. Keeping a ical body outline. The data marked on the close eye on the height and weight of all form goes into a database for real-time re- Sleep, weight, diet, well-body checks reporting, charting, emailing, alerting and your clients will give you and your medical porting and analysis. In this way, a profile and unusual incident tracking are several graphing of the data, making analysis time- providers insight to guide the individual’s can be formed regarding each individual’s common measures of health and wellness. ly and convenient. medical plans, meal plans, and exercise well-body health which is used to inform Our organization, for example, has de- routines. We have developed a database measurable improvements for the individ- veloped database applications for each of Sleep - Research carried out at Melmark which calculates Body Mass Index (BMI) ual. A self-injurious individual, for exam- these critical measures, including an appli- has shown sleep quality, measured by from regular height and weight measure- ple, may have hundreds of self-injurious cation to record sleep quality throughout variables such as time to sleep onset, total ments and uses that data to build a profile behaviors a day recorded to what seems the night, weight and height on a weekly continuous hours of sleep, and total hours at one-, three-, and six-month intervals. like random parts of the body. A trend anal- and monthly basis, well-body checks twice of sleep, impacts both academic and be- This data, in turn, is used to automatically ysis of well-body data over months, how daily and real-time unusual incident track- havioral performance the following day. inform health care staff of cases that meet ing. These applications allow for real-time Sleep quality data, therefore, can be used criteria for excessive weight gain or loss see Analyzing Health page 26 PAGE 14 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2018

NY State Assemblyman Angelo Santabarbara’s Personal Mission of Advocacy on Behalf of New Yorkers with Disabilities

By Assemblyman Angelo Santabarbara The numbers are alarming. The latest Chair of the NY State Assembly’s Sub- report released just this year by the U.S. Committee on Autism Spectrum Disorders Centers for Disease Control showed that about 1 in 59 children in the US are now being diagnosed with autism, up from 1 in ife is almost never a straight path. 68 in 2012 and the numbers have doubled If you try to make a plan, you will in less than 20 years. Autism is now the sometimes head in a direction fastest-growing developmental disability you never could have imagined. in the country. It’s a crisis that needs im- LFor me, the journey has not been simple, mediate attention. and it is has not always gone as I expected. My parents are both Italian immigrants. Autism Action Plan for NY State They left their homes in the Province of Caserta in the Campania region of Italy to With more than 3.5 million Americans come to New York almost 50 years ago and living with an Autism Spectrum Disorder, I was the first in my family to be born here. time was running out and people were be- After graduating high school, I joined the ing left behind. It was time to take on the US Army and served in the reserves for challenges and in my first term in office I 8 years. Later, I graduated from the Uni- introduced my Autism Action NY initiative versity at Albany and went on to work as in the New York State Assembly. It’s a plan a Professional Engineer. During that time that takes on the challenges thousands of my wife, Jennifer, and I got married and families affected by autism are facing each started a family with our first child, a beau- Assemblyman Angelo Santabarbara in the NY State Assembly Chamber day. It’s about participation, removing the tiful baby boy, Michael. We were a new with his 16-year-old son Michael, who lives with the challenges of autism barriers to communication and helping ev- family. We just bought our first home and eryone understand. It’s a plan that’s about were beginning our lives together. Then was a scary diagnosis for a new father and as chair of the Sub-Committee on Autism people, acceptance and inclusion, potential one day, everything changed. It's a day that I didn’t know what the future would hold. Spectrum Disorders where I have the priv- and independence. It’s the plan I created I will never forget. I remember the words It’s a day that I re-live every time new par- ilege of working with amazing advocates for those who need a voice in our state leg- in my head repeating over and over again. ents come into my office after receiving on key issues facing those with develop- islature so that everyone has the opportuni- My wife saying, “Ang, there’s something a similar diagnosis. Years later, it has led mental disabilities. As a state legislator, ty to become the best they can be, with no wrong with Michael. He’s not talking.” me to some of the most rewarding and im- much of my work has been focused on pro- one left out and no one left behind. It’s my As a young father, I was told that my portant work that I could ever be doing. In viding those with developmental disabili- 3-year-old son, Michael, had autism. It the New York State Assembly, I now serve ties a voice in our state legislature. see Stantabarbara on page 26 AUTISM SPECTRUM NEWS ~ FALL 2018 www.mhnews-autism.org PAGE 15

Reducing Disparities in Early Identification of ASD

By Jill Harris, PhD are not screened. Reasons that pediatri- rial with limited wording and found it to Director of Research Development cians may not screen for ASD include lack be effective in identifying ASD within an and Coordinator of Autism Services of time, limited reimbursement, workflow underserved population of young children Children’s Specialized Hospital challenges, and inability to track and mon- at risk for ASD. Currently, the DCI is being itor referrals. Even when autism screening tested within a general population of young tools are used, these tools may not be uni- underserved children. arly identification of autism spec- versally effective among different racial, Other innovative efforts from Children’s trum disorder (ASD) expedites ethnic or cultural groups (Khowaja et al., Specialized Hospital to improve early ac- access to appropriate interven- 2015) or screening may only be offered cess to diagnosis include reducing trans- tion and leads to improved func- in English. This may result in missed op- portation, insurance and financial barriers Etional outcomes (Dawson et al., 2010). Yet, portunities to identify young children at by locating free developmental screening despite concerns of possible ASD often developmental risk, delaying enrollment in clinics within underserved communities noted by 18 months, the median age of di- early intervention and having a potentially (Harris & Norton, 2016). Research on agnosis in the United States continues to negative impact on child outcome. this model found that although almost all hover around age four (Baio et al., 2018). Even when ASD has been diagnosed, children screened in the community-based There are significant income, racial, minority or low-income children often clinics had a regular source of healthcare, and ethnic disparities in the early identi- have difficulty accessing services. For ex- 51% were found to be developmentally at fication of autism. For example, Latino ample, Zuckerman (2014) found that Lati- risk and most reportedly had not previous- children receive a diagnosis of ASD later no parents of young children already di- ly been referred for evaluation. than white non-Latino children (Maga- agnosed with ASD reported that providers Reducing disparities related to early na et al., 2013; Mandell et al., 2002), are sometimes dismissed parents’ concerns. identification of ASD must include im- more likely to receive an alternate diag- This, coupled with a diagnostic process proving access to services once an ASD nosis such as a language disorder (Man- Jill Harris, PhD which was viewed as cumbersome, led diagnosis is made. Research and clinical dell et al., 2009), and when diagnosed, are many parents to normalize child behaviors, practice needs to focus on best practices in more likely to have severe symptoms than of knowledge about ASD, and mistrust of deny that a problem existed, and lose trust training healthcare and other service pro- white non-Latino children (Mandell et health care providers. This suggests that it in the medical system. viders to better communicate with families al., 2009; Palmer et al., 2010). Within the is important that primary providers solic- Clinicians and researchers at Children’s of young children in order to foster effec- Latino population, disparities are especial- it and understand parent concerns as this Specialized Hospital have attempted to re- tive partnerships. Providing care within ly pronounced for those with low English may help the decision-making process re- duce income, language and racial or eth- a medical home model is one method to proficiency (Zuckerman et al., 2017). Rea- garding types of evaluation and interven- nic disparities in ASD diagnosis is various address this issue. The medical home ap- sons for these disparities have not been tion needed. ways. This includes creation of new ASD proach embraces family centered care and well-researched and are likely influenced While the American Academy of Pediat- screening tools with reduced literacy de- promotes care coordination across the var- by multiple factors including culture, ASD rics recommends screening all children for mands (Janvier et al., 2018). Janvier and ious providers and settings involved with knowledge, social support, literacy issues, autism at 18 and 24 months using a vali- colleagues created a tool, the Developmen- maternal education and number of sources dated autism screening tool, many children tal Check In (DCI) that is primarily picto- see Identification on page 26 PAGE 16 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2018

Won’t You Be My Neighbor? Unique People Services Creating Community Connections

By Donna Davis spectrum. This population of incredibly nication and understanding, has at times Writer/Consultant talented and kind-hearted adults are some- tragically resulted in death. Unique People Services times faced with the challenge of feeling The Ruderman Family Foundation safe and included in their new commu- released a white paper on media cover- nities. To help these individuals, Unique age of law enforcement use of force and n a sunny day in August, on a People Services is committed to creating disability. The white paper stated that typical tree lined suburban street opportunities, which introduce individuals individuals with disabilities comprise in Queens, NY, a knock opens a to their neighbors. one-third to one-half of all people killed neighbor’s door. “Are you com- “The foundation of our approach is to by law enforcement officers. In the same Oing?” asked a client of Unique People Ser- fill in the gaps of understanding when it publication, they cited a report published vices (UPS). UPS was holding an open comes to individuals with disabilities. We by The Guardian titled “The Counted,” house to introduce the community to their understand that there is a social stigma that which includes a database of people killed newest neighbors: six women with varying surrounds the population. These opinions by police totaling 1,101 as of December degrees of developmental and intellectual only harbor misunderstandings that fur- 21, 2015. The Washington Post has also disabilities. Before the event, UPS reached ther underlines a view of them as differ- compiled a similar database of individu- out the neighbors with invitations. They ent and potentially dangerous. As a result, als shot (focusing on firearms as opposed invited community residents, elected offi- misconceptions and stereotypes arise. But to all fatalities) - 944 in the same period. cials, and the local police community rela- once you interact and become familiar with “The Counted” tracks 27% of all individ- tions officer. The whole point of the event them, only then do the fears begin to disap- uals killed by police in 2015 as having was to evoke neighbor and community en- pear,” stated Sherri Lindo, Program Direc- “mental health” issues, or 270 people. The gagement for the purpose of inclusion and tor of the residence where the open house Washington Post currently reports 235 in- the safety of both the UPS residents and was held. UPS periodically has the individ- dividuals with “signs of mental illness” their neighbors. Donna Davis uals make cards introducing themselves to shot by police. To put these numbers in Founded in 1991 and headed by Exec- local businesses and community centers of context, according to 2014 figures from utive Director Yvette B. Andre, Unique been denied compassionate and consider- influence. Inclusion is possible, but it does the National Institute on Mental Health, People Services, Inc. (UPS) is a New York- ate treatment elsewhere due to their race, come with its challenges, especially when the best available estimate of the number based nonprofit 501(c)3 that provides sup- religion, gender, sexual orientation, devel- it comes to misunderstanding from the of adults with any diagnosable mental dis- portive housing and medical case manage- opmental level, health status, criminal or overall community and law enforcement. order during that year was nearly 1 in 5 ment services to individuals and families substance abuse history. Sadly, and all too often, we hear in the Americans, roughly 19% totaling an esti- living with mental health challenges, de- As a society, we are aware of the myr- news of heartbreaking events that have oc- mated 43 million people. These facts re- velopmental disabilities and HIV/AIDS. iad of support for children on the autism curred because of the lack of proper com- flect a tragic reality, yet UPS understands Their mission is to serve—holistically and spectrum, but the same degree of support munity introductions. Interacting with law without judgment—those who may have doesn’t always exist for the adults on the enforcement, because of a lack of commu- see Community on page 24 AUTISM SPECTRUM NEWS ~ FALL 2018 www.mhnews-autism.org PAGE 17 AUTISM SPECTRUM NEWS DESK

Preparing the Field of Disabilities Services for Managed Care Managed Care Community of Practice Offering Training and Technical Assistance to Providers of Services to People with Intellectual and Developmental Disabilities in NY State

By The New York Alliance for • Factors to consider when contracting Inclusion & Innovation with managed care organizations

• Demonstrating impact and value in ugust 27th, 2018, marked the preparation for value-based payments first day in a series of webi- nar trainings designed to help Funds in the 2018-19 State Budget en- providers of services to people able the New York Alliance for Inclusion Awith disabilities prepare for and transition & Innovation to launch this technical as- to Managed Care. sistance project. Trainings and learning New York completed its first significant opportunities are free of charge and start step in the transition with regional imple- today with introductory webinar on the In- mentation of Care Coordination Organi- troduction to Managed Care Community zations (CCOs) throughout the state. The of Practice in I/DD. Other such webinars Managed Care Community of Practice, a include Managed Care Basics; and Talking project of the NY Alliance for Inclusion to Not-for-Profit Board of Directors about and Innovation, will aid further in the CCOs and Managed Care. transition by offering training, technical “Building on the model and expertise assistance and resources to all providers gained in bringing technical assistance to of services to people with I/DD. This will providers in the behavioral health sector, include: we are pleased to bring this same type of Ann Hardiman Michael Seereiter resource to providers in the I/DD sector’” • Understanding the principles and con- said Ann Hardiman, President & CEO of cepts commonly associated with man- • Guiding providers through the opera- technology and billing system require- the New York Alliance for Inclusion aged care (e.g. managing risk, utilization tional changes necessary to function and ments, grievance procedures, interface management, prior authorization) thrive in managed care (e.g. information with other service providers) see Managed Care on page 25 PAGE 18 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2018

Suicide Risk from page 1 general, studies using many participants are children and teenagers. Dr. Horowitz led more likely to detect differences between the research team that, in 2012, determined group to see if a particular condition or them than studies using just a few people that a four-question ASQ could identify the treatment affects an outcome.) People with a certain trait, in this case, autism. suicide risk in children who came to hospi- with autism had a higher risk of suicide Perhaps not surprisingly, given what tal emergency departments.31 For example, attempts and suicide than the comparison doctors know about depression, the study youth are asked if they recently wished they group, even when scientists factored in the found a link between depression and sui- were dead, felt they or their family would presence of depression and attention defi- cidal behavior. Children with poor social be better off if they were dead, or have been cit disorder, according to research present- communication skills were more likely to having thoughts about killing themselves. ed at a 2018 international autism meeting.5 have symptoms of depression at age 12. If patients answer “yes” to any of the first In fact, their close relatives – parents, sib- That, in turn, raised their risk for suicidal four questions, they then are asked if they lings, and children – also had a higher risk behavior by age 16.9 are having thoughts of suicide “right now.” of suicidal behavior. Having other psychiat- Youth who say “yes” to any of the questions ric problems, in addition to family risk fac- Studying Those Receiving require a brief suicide safety assessment. tors, “are important explanations to the in- Psychiatric Care in Hospitals “During that study,” Dr. Horowitz re- creased risk of suicidal behaviour in ASD,” called, “I got a call from a psychologist the Swedish scientists in concluded.5 In the United States, another group of in Toronto who wanted to know if we had Among people with autism, the risk was researchers looked at a subset of the au- included patients with autism spectrum highest for those who did not have intel- tism community that might be expected to disorder and in the lectual disability, especially women, in be at greatest risk: youth with autism who study. I told her we had not. She reported Sweden. Other studies have shown a high- have been admitted to a hospital for psy- her great need of a screening tool in these er risk for depression22,24,25 and suicide13 in chiatric care.23 populations. We decided we needed anoth- that same subset of the autism community Those researchers examined information er study to find out if the ASQ would work – people with at least average intelligence. Suzanne V. Rybczynski, MD supplied by parents of the 107 youth, who well in people with autism.” Some researchers speculate that those with all could speak. The families reported that Kennedy Krieger Institute, a hospital for “high-functioning” autism may have a may raise the risk of suicide, researchers 22 percent, or about 1 in 5, of these youth children and young adults with develop- higher suicide risk because they have more took those differences into account when had talked about death or suicide “often” mental and nervous system disorders, con- psychiatric problems, or have a greater assessing the youth and adults. In their or “very often” for several days at a time. ducted a preliminary study using the ASQ awareness of their differences and social analysis, the researchers concluded, hav- Many of them also had a mood disorder or in 2017.32 Nurses offered suicide screen- isolation.12,13 ing autism itself is an “independent risk anxiety. All had been admitted to a psychi- ings to patients ages 8 and older during It’s also possible that researchers simply factor to attempted suicide regardless of atric unit in a hospital that participates in appointments at outpatient clinics. (Par- know more about risk in people with mild- the presence of psychiatric [conditions], the Autism Inpatient Collection (AIC) re- ents could answer for the child or could er forms of autism because they are studied including depression, bipolar disorder, and search project. refuse screening). If the screening showed more often and more thoroughly than peo- alcohol and substance use disorders.”8 The Of course, these results may be different a risk, then a doctor or nurse practitioner ple “severely affected by autism.”26 Taiwanese researchers urged doctors to in youth with autism who have not been ad- performed a more detailed assessment or monitor “suicide-related symptoms,” as mitted to a hospital for mental health rea- consulted a psychologist or social worker. Is Autism Itself a Risk Factor? well as mental and behavioral disorders, in sons. For example, some studies of youth Almost 14 percent of the patients from patients with autism. outside hospital settings showed lower the autism clinic screened positive, com- Is having autism itself a risk factor for rates of suicidal thoughts, according to the pared to about 5 percent of the patients in a suicide attempt? Yes, according to one What About Social AIC researchers.28,29 It’s also possible that clinics for youth with other medical con- study in Taiwan. Using medical insurance Communication Problems? some youth spoke frequently about death ditions. “I was surprised how much higher records, researchers compared two groups as part of an autism-related preoccupation, the rate was for the autism clinic compared of teenagers and young adults, one with a Although the Taiwanese study found that rather than a suicide wish, they acknowl- to the developmental pediatrics clinic and medical diagnosis of autism and a similar, having autism raised suicide risk, a British edged. Having an intense focus on a topic the neurology clinic,” said one of the re- or control, group that did not have autism. study said it did not. In fact, British re- or object is a symptom of autism.30 searchers, Dr. Suzanne V. Rybczynski, the (In the U.S. this age group has the highest searchers found that having certain charac- Institute’s medical staff services direc- rate of suicidal thoughts in the general pop- teristics common to autism, but not neces- Finding Those with Autism Who Need Help tor and medical director of the Pediatric ulation.27) Neither the 5,600 people with sarily autism itself, increased a teenager’s Rehabilitation Unit. autism nor the 22,500 controls had a history risk. Those scientists followed more than Some of the same researchers are work- Dr. Rybczynski said some parents ex- of suicidal behavior when the study began. 5,000 British youth from birth through ing on another study that could shed more pressed concern that asking about suicide Researchers followed them for three to 10 age 16. By age 16, youth with poor social light on suicide risk in autism – and could would cause their child to contemplate it. years, and compared the number of report- communication skills had a higher risk of help doctors identify people who need However, she said, “The research says that ed suicide attempts when the study ended in suicidal thoughts, plans and behaviors than mental health treatment. is not the case. Just talking about it doesn’t 2011. Almost 4 percent of the ASD group teenagers who did not have those deficits.9 In an interview, clinical psychologists mean you’re planting ideas of suicide in had attempted suicide, compared to less Having a social communication problem Lisa M. Horowitz, PhD, MPH, and Audrey their head.” than 1 percent of the control group.8 is one of the two major symptoms of au- Thurm, PhD, of the National Institute of Not surprisingly, the teens and adults with tism, but it does not mean someone has au- Mental Health, said they are planning to What Should You Do If autism also were more likely to have atten- tism. The researchers found “no evidence” test a questionnaire to see if it would accu- Someone Talks About Suicide? tion-deficit hyperactivity disorders, intellec- that having an autism diagnosis raised risk, rately assess suicide risk in autism. tual disability, anxiety disorders, depression but the number of youth with a medical or The questionnaire, the Ask Suicide-Screen- Dr. Horowitz urged parents to take note and bipolar disorder than controls.8 school diagnosis of ASD was low, making ing Questions, or ASQ, has been tested suc- Because certain psychiatric conditions their analysis admittedly “imprecise.”9 In cessfully for use with typically-developing see Suicide Risk on page 22 AUTISM SPECTRUM NEWS ~ FALL 2018 www.mhnews-autism.org PAGE 19 AUTISM SPECTRUM NEWS DESK

New Biomarker Panel Could Accelerate Autism Diagnoses About 17 percent of kids with autism identified with metabolic blood test

By UC Davis Health old. Families often must wait over a year or stitute is the development of early biologi- more for an appointment with a specialist, cal markers for detecting the risk of autism delaying diagnosis even further. spectrum disorder,” Amaral said. “It would nvestigators at the UC Davis MIND CAMP researchers believe the answer have been difficult for the MIND Institute Institute and NeuroPointDX, a divi- lies in the metabolome – the molecules that to carry out the CAMP study on its own.” sion of Stemina Biomarker Discov- remain after larger molecules have been Amaral added that CAMP is an excellent ery, have identified a group of blood broken down (metabolized). Metabolom- example of an academic/corporate partner- Imetabolites that could help detect some ics has the advantage of monitoring both ship that has the promise of benefitting the children with autism spectrum disor- genetic and environmental contributions to autism community. der (ASD). Part of the Children’s Autism the development of autism. “It is unlikely that a single marker will Metabolome Project (CAMP), the largest “By the time you’re getting to metab- detect all autism,” he said. “This paper metabolomic ASD study ever attempted, olomics, you’re looking at how the body demonstrates that alterations in metabol- these findings are a key step toward de- is working, not just the genes it has,” said ic profiles can detect sizable subsets of veloping an ASD biomarker test. The re- Amaral, a professor of Psychiatry and Be- individuals with autism. The hope is that search was published September 6 in the havioral Sciences. we will be able to generate a panel of bio- journal Biological Psychiatry. The team hopes to use these and other markers that will detect a large proportion “With this panel of alterations in amino CAMP findings to accelerate diagnosis and of people at risk. Moreover, this approach acid metabolism, we can detect about 17 move kids into intensive behavioral thera- highlights metabolic pathways that may be percent of kids with ASD,” said David G. py at an earlier age, which has proven quite targets of intervention.” Amaral, founding director of research at effective. The multisite study has collected In their work the research team compared the MIND Institute and senior author on blood samples from 1,100 children – about blood metabolites – specifically, amino ac- the paper. “This is the first of hopefully two-thirds having been diagnosed with ids – in 516 kids with ASD and 164 chil- many panels that will identify other subsets David G. Amaral ASD – between 18 months and 4 years dren showing typical development. They of kids with autism.” old. This is the first publication from the found that 17 percent of the ASD children No biomarker tests for ASD current- their altered behaviors, which may not be- CAMP effort. ly exist. Children are diagnosed based on come evident until children are 2-4 years “One of the major goals of the MIND In- see Biomarker on page 24 PAGE 20 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2018

Bullying from page 1 them from becoming the target or perpetra- ioral disorders may exhibit erratic or out special healthcare needs sat and ate tor of bullying. Teachers, school staff, and unusual behavior that makes them stand lunch together. Several senior students can help keep kids safe. other students need to understand the spe- out among their peers. led the group, and invited their friends cific impairments of a child’s health con- to join. All kinds of students participat- Federal Civil Rights Laws dition, so that they can develop strategies Supporting Special Needs ed. The students got to know each other and Youth with Disabilities and supports to help them participate and and Preventing Bullying at School through question and answer periods and succeed in class and with their peers. discussions over lunch. They discovered When bullying is directed at a child Strategies to address student’s special things they had in common and formed because of his or her established disabil- Potential Perceived Differences needs at school can also help to prevent friendships. A group of them went to the ity and it creates a hostile environment at bullying and have positive outcomes for prom together. school, bullying behavior may cross the Children and youth with special needs all students, especially tactics that use a line and become “disability harassment.” are impacted by their conditions in a va- team approach, foster peer relationships, • Youth at one school held a wheelchair Under Section 504 of the Rehabilitation riety of ways. Every child is unique, and and help students develop empathy. Some soccer night. Students with special Act of 1973 and Title II of the Americans so are the ways that their health condition strategies include: healthcare needs that used wheelchairs with Disabilities Act of 1990, the school affects them. Some impairments, such as coached their peers in how to use and must address the harassment. Read more brain injuries or neurological conditions, • Engaging students in develop- navigate the wheelchairs to play. The about federal civil rights laws. can impact a child’s understanding of social ing high-interest activities in which ev- students helped another peer who used interactions and they may not even know eryone has a role to play in designing, a wheelchair who was interested in pho- Bullying Prevention for Children when they are being bullied. Here are a few executing or participating in the activity. tography by mounting a digital camera with Special Health Care Needs ways that disabilities may affect children: on her chair so she could be the game • Providing general up-front informa- photographer. Having special health care needs due to • Children and youth with cerebral pal- tion to peers about the kinds of support neurological, developmental, physical, and sy, spina bifida, or other neurological children with special needs require, and • Another school created a club rule that mental health conditions can add to the or physical conditions can struggle with have adults facilitate peer support. required clubs to rotate leadership re- challenges children and young people face physical coordination and speech. sponsibilities in club meetings so that as they learn to navigate social situations • Creating a buddy system for children every member had a chance to run the in school and in life. While bullying and • Brain injuries can impair speech, move- with special needs. group. This allowed students with spe- cyberbullying is an unfortunate reality for ment, comprehension, and cognitive cial health care needs to take on leader- many young people, children with special abilities or any combination of these. A • Involving students in adaptive strategies ship roles. healthcare needs are at greater risk for be- child or youth with a brain injury may in the classroom so that they participate ing targeted by their peers. have trouble with body movements, or in assisting and understanding the needs Peer support is an important protective One reason children and young adults speaking in a way that others can under- of others. factor against bullying. By working to- with special health care needs might be at stand. It could take them longer to under- gether, teachers, parents and students can higher risk for bullying is lack of peer sup- stand what is being said or to respond. • Conducting team-based learning activi- develop peer education, team-building, port. Having friends who are respected by ties and rotate student groupings. and leadership activities that foster friend- peers can prevent and protect against bul- • Children and young people with Autism ships, build empathy, and prevent bullying lying. Ninety-five percent of 6- to 21-year- Spectrum Disorder, Attention Deficit • Implementing social-emotional learning to make schools safer and inclusive for all old students with disabilities were served Hyperactivity Disorder, and Tourette’s activities. students, including children with special in public schools in 2013. However, chil- Syndrome may have difficulties with so- healthcare needs. dren with special health care needs may cial interactions, sensitivities, impulsivi- • Rewarding positive, helpful, inclusive have difficulty getting around the school, ty, and self-regulating their behavior or behavior. Additional Resources trouble communicating and navigating effectively communicating. social interactions, or may show signs of Peer Support Makes a Difference Bullying and Children and Youth with vulnerability and emotional distress. These • A child or young person who experiences Disabilities and Special Health Needs Tip challenges can make them be perceived as anxiety or depression or who has a men- Here are a few examples of innovative Sheet - PDF different, and increase their risk of aggres- tal health condition may be withdrawn, strategies used by schools to promote peer- sion from peers. quiet, fearful, anxious, or vulnerable. to-peer learning, foster relationships, and Keeping Students with Disabilities Safe Young people with special needs may They may exhibit intense social awk- prevent bullying: from Bullying benefit from, both individualized and wardness or have difficulty speaking. class-wide approaches to address the spe- • One high school created a weekly lunch Protecting Youth from Bullying: the Role cific effects of their condition and prevent • Children who have epilepsy or behav- program where student’s with and with- of the Pediatrician

Dating from page 8 profile may be perceived by others and can then lead to rejection and further so- For more information about Leslie A. what they may be inadvertently disclosing cial isolation upon meeting someone for Sickels, LCSW and the clinical services profile, which is often taken at face value, about themselves. This may also be true a date. Along with exacerbating in-per- she provides visit LeslieSickelsLCSW. can be extremely challenging because of for choosing images to use on dating pro- son social challenges, many therapists are com or contact her directly at LeslieSick- the subtleties and limited context. Despite files. It can be helpful to seek advice or not always up-to-date with dating trends. [email protected]. having other online interactions, such as review from peers or other supports in an This may lead therapists to offer advice chat rooms or gaming sites, the stakes are individual’s life when they are creating a or dating website suggestions that are not References higher for knowing if someone is who they dating profile. current, which can lead to further failures say they are, in online dating. If individ- in dating. Working with a provider who is Attwood, T., Hénault, I., & Dubin, N. uals on the spectrum struggle to identify Support from Others well-versed in dating and forming roman- (2014). The autism spectrum, sexuality and when something is amiss, they can be at in- tic relationships is essential. the law: What every parent and professional creased risk of being deceived, “catfished,” Roth and Gillis (2015) suggested that needs to know. London: Jessica Kingsley. or vulnerable to a scam. While some fake individuals on the spectrum would most Suggestions profiles are easy to detect, including those benefit from further support on how to en- Baron-Cohen, S. (2007). I Cannot Tell a that are specifically asking for information, gage in online dating in safer, more suc- Psychoeducation related to dating and Lie - what people with autism can tell us money, or sex, others are much more real- cessful ways. While this is often the goal intimacy is the biggest tool individuals on about honesty. Retrieved from http://in- istic in appearance and interaction and can of supportive therapists and family mem- the autism spectrum can receive related to character.org/archives/honesty/i-cannot- lead to disappointment and further poten- bers, it does not always result in a positive online dating. Understanding social con- tell-a-lie-what-people-with-autism-can- tial rejection. outcome. Many well-meaning supports ventions and progression related to dating tell-us-about-honesty/ Along with deciphering others’ profiles, in an individual’s life may become over- can help individuals not only strengthen individuals on the spectrum must write ly involved in their online dating success, these skills but have a greater awareness Hénault, I. (2006). Asperger’s Syndrome their own profile in order to have an on- which can result in over-involvement in when something is awry in their online and Sexuality: From Adolescence through line dating presence. Often, neurodiverse creating a profile, managing communicat- communication. By better deciphering Adulthood. London: Jessica Kingsley. individuals tend to be honest and candid ing over texts, or reminders of social con- fake profiles or potential dangers, we begin when asked to describe themselves (Bar- ventions and throughout the process. to eliminate some of the most significant Roth, M. E., & Gillis, J. M. (2014). “Con- on-Cohen, 2007). While this is a positive While these can be helpful learning tools, safety concerns. We also allow an individ- venience with the Click of a Mouse”: A quality in many regards, it can cause chal- especially for individuals who are new to ual to grow in their knowledge and ability Survey of Adults with Autism Spectrum lenges when portraying oneself online. In- online dating, it can also cause dispari- to romantically connect with others in an Disorder on Online Dating. Sexuality and dividuals on the spectrum can struggle to ties between online communication and authentic, successful way, which is the ul- Disability, 33(1), 133-150. doi:10.1007/ understand the social context of how their in-person meetings. These discrepancies timate goal. s11195-014-9392-2 AUTISM SPECTRUM NEWS ~ FALL 2018 www.mhnews-autism.org PAGE 21

Wandering from page 12 condition. Given that only 14 percent of portant Message,” Landon Bryce, who runs Only then did someone at the school notify study respondents said they got any guid- the site thAutcast, asks, “If you couldn’t talk, her. The advocate notes that had the school said fear of their child eloping stopped ance on the issue from their pediatrician or and the only way you could communicate had a proper emergency response plan — them from attending or enjoying activities any other doctor, “the hope is the code will that something was bad was to move away or if Connor had been wearing an ID — the outside the home, increasing their social open the door for awareness, education, un- from it, how would you feel about people situation could have been resolved quickly. isolation; not surprisingly, 40 percent of derstanding, training and critical dialogue making a law that should be ignored?” Instead, “he was still in the cop car when these already exhausted parents said they between doctors and caregivers.”McIlwain He notes that a child might bolt because they called me,” she says. lost sleep while worrying about a potential says the American Academy of Pediatrics is of sensory discomfort—perhaps a teacher’s “I got him out of that school as fast as I “escape” during the night. preparing a fact sheet on wandering so that perfume is making him sick, so he flees the could,” McIlwain says. She then enlisted a So why do ASD children wander? physicians have ample information about classroom—or, in the worst-case scenario, lawyer to help add a 1:1 aide to his Individ- While researchers still aren’t sure, parents the code and resources to share with parents. abuse in the home. In the first example, a ualized Education Plan (IEP) to escort him ranked these as their child’s top five pos- “The best overall strategy,” McIlwain child might be placed in a more restrictive during transitions, such as when he leaves sible motivations: adds, “is a multi-tiered approach, which school setting, thus impeding his education- the classroom to go to a therapy. With the includes educating the child about safety al opportunities; in the second, it could result added support, Connor is able to attend a 1. He/she simply enjoys running and ex- and dangers using whatever means of com- in him being returned to an unsafe environ- school for typically developing children. ploring (54 percent) munication works, including , ment. After the code was approved, Bryce McIlwain feels the code will help keep the language and/or visual prompts. It’s also wondered how long it would take before aide should her son continue to need one, 2. He/she is heading to a favorite place he important that caregivers—and schools— other advocates start “calling for insurance so in October she’ll have his pediatrician enjoys such as a park (36 percent) work to understand what is causing, or companies to pay for parents to get their kids provide an updated letter noting the diag- contributing to, the wandering or bolting implanted with microchips, like pets?” nosis for the school and his IEP. 3. He/she is trying to escape an anxious situ- behaviors so that any triggers may be ad- But McIlwain says the code is aimed at While some adults with autism worry ation like demands at school (33 percent) dressed or eliminated.” protecting, not harming, children with the that a medical code could be used to justi- highest risk of wandering-related injury fy the restraint or seclusion of a student, or 4. He/she is pursuing a special topic of inter- Training for Police Officers or death. place him in a more restrictive school en- est, i.e. when a child fascinated by trains vironment, McIlwain says her experience heads for the train tracks (31 percent) Alison Singer, president of the Autism An Attraction to Water with Connor demonstrates how the exact Science Foundation, one of the advoca- opposite could result. If more parents can 5. He/she is trying to escape uncomfort- cy groups behind the IAN survey, says Given the high number of wandering-re- use the code to get their wandering child able sensory stimuli such as loud noise advocates hope the code will also allow lated drownings, some in the community the supports he or she needs, the child could (27 percent) for more funding for research and proper have come to speculate as to why those on enter a less, not more, restrictive setting. training for police officers, firefighters the spectrum are drawn to water; one theo- Running to or Away from Something and other first responders. These rescuers ry is that it has an alluring, calming effect Relieving Stress on Parents need to better understand those on the au- due to the repetitive pattern of reflections, Experts divide wandering into goal- and tism spectrum, including their behaviors. or the way it puts even pressure on the Along with reducing wandering inci- non-goal types. While the desire to find an Otherwise, Singer says, they may not body, which sensory-seeking children may dents and deaths, the code is aimed at re- alluring pond is goal-directed, running to know how to locate a nonverbal or unre- enjoy. However, Singer says there’s no lieving the incredible stress the behavior escape a stressor is non-goal-related. “Our sponsive wanderer. There’s also the dan- data from the wandering survey to support places on caregivers. Wandering children fight-or-flight kids will bolt” when anx- ger that they might feel menaced if, for those theories: “We just don’t know why.” “are impulsive,” McIlwain adds, so their ious, says Lori McIlwain, chairwoman of instance, an impulsive teen tries to reach McIlwain says the wandering code could parents are “constantly in prevention mode the National Autism Association and a key for a shiny object like a badge or gun or a have helped in myriad ways had it been in for fleeing, bolting, unpredictability, bit- player in the fight against wandering and wanderer “invades their space,” as many effect when her son, Connor, had his most ing. We need support. Instead, we get con- elopement, adding that these are the children on the spectrum often do; if that were to dangerous wandering incident. The boy, stant scrutiny and judgment from other who get struck by vehicles. “We might see a happen, the responder might mistakenly now 11, began wandering at school when parents. But these are the same folks who snake and run away. Our kids may see some- think the wanderer is high on drugs. he was 3. But at 7, he was able to leave the would say ‘Why weren’t you more protec- thing we wouldn’t be afraid of. But they are Advocates also hope the code can be playground of his suburban Raleigh, N.C., tive?’ if something were to happen.” and the adrenaline misfires.” Still, the ma- used to establish that preventative mea- school, despite McIlwain’s notes alerting At a time when parents who “hover” are jority of parents surveyed reported that their sures such as tracking devices, locks, and the staff to “not let him out of your sight.” often chastised, “the pressure from oth- child is playful or happy and focused while door and window alarms are a medical ne- Motivated by his fascination with exit er parents and family members who say wandering; far fewer said their child is sad, cessity covered by insurance. Wandering signs, the boy, who has autism, took off we’re too overprotective and overbearing anxious or “in a fog” when they take off. has already led some parents to fit their through the woods and was headed for the may make parents think they’re doing Last week, autism advocates scored children with tracking devices, which are highway when a Good Samaritan picked something wrong,” she adds. “They may their first major victory in their campaign registered with local law enforcement offi- him up and started driving him around, adjust their parenting to meet others’ ex- to better respond to wandering when the cials. However, unless they’re waterproof, hoping to find his school. pectations. It’s the wrong way to go. Par- Centers for Disease Control’s safety sub- they often fail to save lives. When staff at the first school the man ents need to stand their ground and focus committee overseeing autism announced a This is what happened to 10-year-old stopped at didn’t recognize Connor, they on the child, not on how other people think new medical diagnostic code for wander- Kristina Vlassenko, whose body was dis- called the police. The officers took over they should be parenting.” ing. This sub-classification, which will go covered in a water-filled hole at a construc- the search without knowing who the boy “Other parents don’t know our reality,” into effect October 1, will allow clinicians tion site in Colorado. Her Care Trak track- was. (While Connor is verbal, McIlwain she adds, “and they never will.” to add a wandering code to an ASD diag- ing system, a watch-sized device, does not explains, his language was much more lim- For more information on waterproof nosis, akin to a diagnosis of autism with emit signals under water. By the time she ited at the time. He was unresponsive to his tracking devices, ways to secure the home, epilepsy. The code is not exclusive to au- was found, it was too late. rescuer’s questions, though “he did convey and others measures to guard against tism; it covers other conditions where the to the police that he was going on an ad- wandering, see the Autism Wandering child or adult wanders, including a range Concerns over Medicalizing Wandering venture to find his favorite exit sign.”) Awareness Alerts Response and Education of cognitive disabilities. (AWAARE) Collaboration site. However, the code has not received uni- An Appropriate Response Plan Beth Arky is a Brooklyn-based freelance Enabling Pediatricians to Help versal support from the autism community. writer and editor covering parenting, Adults with autism have voiced strong con- Meanwhile, no one at Connor’s school health and children’s learning and devel- “We really went for a medical code so cerns that by categorizing wandering as a had called his mother — or the police. “He opmental issues, including autism. pediatricians would be a central source medical condition rather than a behavioral could have been struck by a car, raped, ab- This article is reprinted with permission of information” for parents of wanderers, one, parents, schools and others will no lon- ducted,” McIlwain says. When the police from the Child Mind Institute. You may McIlwain says, while creating a better un- ger ask why a person might be wandering, In saw people at Connor’s school searching view the original article at https://child- derstanding of the behavior as a medical his video “Autism and Wandering: An Im- for him, they realized he belonged there. mind.org/article/autism-plus-wandering/. PAGE 22 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2018

Dangers from page 11 creates additional layers that can be used Bullying many social activities, however, it is very to conceal the deceptions. easy for an autistic person with deficient related to subjects in school, they can of- Internet websites that involve illegal Another very common danger faced social skills to get the impression that al- ten be persuaded to do class assignments activities can be especially dangerous, by autistics of all ages is the problem of cohol can benefit them in such situations, for others (as happened to me years ago because they are often monitored by law bullying (physical, verbal, etc.), be it in especially when they see others having suc- as a student) or even assist in cheating on enforcement agencies which have capa- schools (at all levels), workplaces, or lo- cessful interactions in these settings (I actu- examinations; this can result in academic bilities to determine the locations of us- cal communities. For those on the autism ally believed this at one time in my youth). code violations and have damaging conse- ers that are accessing them. Of particular spectrum, bullying needs to be seen as What is in fact happening is that the alco- quences to the autistic, for whom success concern are sites that contain child por- nothing less than the victimization by one hol reduces their social anxieties (this well- in an area of interest often provides the nography, information about weapons person with greater influence or power of known effect of alcohol is actually regarded greatest hope of a positive future outcome. and explosives, or other materials that are another who is unable even to understand by some to be a legitimate use), but in no With older adults, a similar situation exists illegal to possess or even look at. Unfor- what is happening, let alone why it is being way enhances their social abilities. While when an employed individual enlists an tunately, a significant number of autistics done. Also, autistics in any and all circum- this may seem like a minor technical point unemployed autistic to do work for which have been known to browse such web- stances need to be provided with someone to most neurotypicals, it is of far greater im- the non-autistic gets paid. sites, sometimes quite extensively, purely to whom they can report bullying, and who portance to autistics who, whatever choices out of their intense curiosity. They have can help them address it in a manner that they might make, need to understand that The Internet and Illegal Activity no malicious intent whatsoever, but nev- does not lead to further repercussions; this alcohol functions as a drug that reduces in- ertheless attract the attention of officials can range from practical advice about how hibitions and is not “liquid social skills.” A new class of dangers for autistics who are monitoring the sites. In more than to deal with such a situation to proactive- in the modern age is found on the inter- a few instances, this has led to the arrest ly taking whatever action is needed to stop Conclusion net. Many of the same predators who of such autistics, who then faced severe the bullying. The fact that autistics are far have long victimized autistics can now legal repercussions. Autistics need to more susceptible to bullying than most There are numerous other dangers and be found on social media and other on- be made aware of this danger, taught to of the typical population also needs to be hazards which mainly affect autistics; line venues. These dangers have long recognize and avoid any sites that might more widely recognized. I have only addressed a few that I could been publicized for various non-autistic present hazards for them, and impressed think of and that space permits me to dis- populations (the lonely, the isolated, the upon them the capability of law enforce- Alcohol cuss. These need to be identified, perhaps elderly, etc.), and are similar in both the ment to locate their computers (using using the life experiences and stories of inducements (friendship, acceptance, ro- internet addresses), track them down, ar- Finally, many hazards that are faced by adult autistics as a guide, which can in turn mance, etc.) and hazards (e.g., taking fi- rest them, and confiscate the computers anyone in our society can affect autistics in be used to inform those who live and work nancial advantage) as more traditional for evidence. These issues can easily be a different and possibly unique manner. An with autistics so that they can be vigilant scams, but once again autistics are espe- explained to the many autistics that are example of this is the decision whether or about them and serve as cautionary tales cially susceptible to such predations. The knowledgeable about computer technolo- not to consume alcohol and the understand- for autistics themselves. element of electronic communication, as gy; they perhaps can in turn be enlisted to ing of its potential dangers, most of which opposed to direct personal interaction, help explain them to other autistics who are the same for autistics as they are for Karl may be contacted at kwittig@ further complicates matters because it are less so inclined. anybody. Because drinking is a part of so earthlink.net.

Suicide Risk from page 18 chief science officer of the Autism Science • The International Association for Sui- solm, M. S. (2011). A suicidal adult in Foundation. cide Prevention publishes information crisis: An unexpected diagnosis of au- if a child mentions suicide. “We need to about crisis centers on every continent. tism spectrum disorder. The American take all talk of suicide seriously, and pay The Road Ahead in Autism Research (Click on the links under the heading Journal of Psychiatry, 168(9), 890-892. attention to it,” she said. “While suicide is “Categories,” under the map). doi:10.1176/appi.ajp.2011.10091261 a very rare event, if a child is talking about Autism researchers Darren Hedley and [doi] Abstract. thoughts of suicide or wanting to kill them- Mirko Uljarevic, who reviewed 13 studies • Be the One to Save a Life has resources selves, it’s important to say to him, ‘You on the topic, concluded that more research to help people in crisis, and people con- 2. National Center for Injury Prevention and mentioned that you were thinking you is needed into what causes the higher cerned about them. Control. (2018). Suicide rising across the wanted to die, or kill yourself. I’m glad risk.12 They also called for more study into US: More than a mental health concern. you are telling me - I take this very seri- the role of ASD severity – and IQ – in sui- • U.S. Centers for Disease Control and Retrieved from https://www.cdc.gov/vi- ously. My first priority is keeping you safe, cide risk, to confirm whether people with Prevention’s (CDC) online resources talsigns/suicide/ and I want to be able to help you.” “high-functioning autism” have a higher on suicide prevention. “Do not leave him alone, and if you’re risk than those with other forms of autism. 3. World Health Organization. (2018). concerned about his safety, take him to a Future studies also could sort out conflict- • Suicide prevention information from the Suicide: Key facts. Retrieved from hospital emergency room,” she advised. ing reports about whether suicide risks U.S. National Institute of Mental Health http://www.who.int/en/news-room/fact- People also can contact suicide prevention differ between males and females on the sheets/detail/suicide help lines that are open 24 hours a day, spectrum. And they concluded that more • Download the CDC’s report, “Prevent- seven days a week, she said. (See the Ad- research is needed into what supports or ing Suicide: A Technical Package of Pol- 4. Centers for Disease Control and Pre- ditional Resources section for numbers to help would reduce suicide risk for people icy, Programs, and Practices.” vention (CDC). (2018). National suicide call or text, or to start an online chat.) with autism.12 statistics. Retrieved from https://www. Families are not the only ones being “We must figure out what scientists can • Download a poster by Interactive Au- cdc.gov/violenceprevention/suicide/sta- urged to pay close attention to depression do to better help those in crisis,” agreed tism Network researchers on “Suicid- tistics/index.html and suicidal thoughts in people with autism. Dr. Halladay, “because we can’t assume al Ideation and Behaviors in Children, Health care providers should be “vigilant that the strategies for helping those con- Youth, and Young Adults with ASD.” 5. Hirvikoski, T., Boman, M., Chen, Q., for suicidal behavior” in their patients with sidering suicide are the same for everyone D’Onofrio, B., Mittendorfer-Rutz, E., autism, according one research article.5 [with autism].” • Read Interactive Autism Network arti- Lichtenstein, P., . . . Larsson, H. (2018). Physicians can be proactive with these cles on “Diagnosing Depression in Au- (2018). Suicidality and familial liability patients, said Paul H. Lipkin, a pediatrician Additional Resources tism” or finding a mental health provider for suicide in autism: A population based specializing in neurodevelopmental dis- experienced with ASD, “Help Wanted: study. Paper presented at the Interna- abilities. “They should consider screening See the following resources for 24/7 help: Mental Health Provider, Autism Experi- tional Society for Autism Research 2018 for suicide in order to identify problems ence Preferred.” Annual Meeting Program Book and Ab- early, and initiate mental health treatments • The U.S.-based National Suicide Pre- stract Book, Rotterdam, Netherlands. Re- before problems escalate,” said Dr. Lipkin, vention Lifeline provides 24/7, free and • World Health Organization’s Preventing trieved from https://insar.confex.com/in- who directs the Interactive Autism Network confidential support for people in dis- Suicide: A Community Engagement Toolkit sar/2018/webprogram/Paper26787.html and has been involved in suicide research. tress. Call 1-800-273-8255 or visit their Certainly, social and communication website for a chat feature. The lifeline This article has been reproduced with 6. National Institute of Mental Health. problems can make it harder for those on also has prevention and crisis resources, permission of Kennedy Krieger Institute, (2017). Ask suicide-screening questions the spectrum to request help, or to have and information for professionals. Baltimore, MD. This information appeared toolkit: Screening youth for suicide in their difficulties noticed by others. “It is originally at https://iancommunity.org/aic/ medical settings. Retrieved from www. incredibly heartbreaking to think that in- • Text TALK to 741741 in the U.S., to be link-between-autism-and-suicide-risk. nimh.nih.gov/labs-at-nimh/asq-tool- dividuals with autism feel trapped by so- connected by text message to a crisis kit-materials/index.shtml cial communication impairments and are counselor at the Crisis Text Line. References unable to reach out for help, and do not The complete list of references can be have the same social support structure as • The Canadian Association for Suicide 1. Spencer, L., Lyketsos, C. G., Sams- found at https://iancommunity.org/aic/ those without autism,” said Dr. Halladay, Prevention has a help line. tad, E., Dokey, A., Rostov, D., & Chi- link-between-autism-and-suicide-risk. AUTISM SPECTRUM NEWS ~ FALL 2018 www.mhnews-autism.org PAGE 23

Real Estate from page 4 Now is the time for exploration, explana- References First Place Global Leadership Institute. tion, engagement and expansion of sup- (n.d.). Retrieved from https://www. their careers or pursue a plethora of hob- portive housing development across North Ahrentzen, S., Barger, T., Blackbourn, J., firstplaceaz.org/leadership-institute/ bies and interests to a focus on vital med- America. A new generation of dynamic Bosworth, G., et al. (2009) Opening Doors: overview/ ical and/or mobility issues. A mature mar- housing models is only possible by collec- A Discussion of Residential Options for ket affords a broader mix with healthy tively tapping private, government, non- Adults with Autism and Related Disorders. First Place Transition Academy. (n.d.). Re- competition, rewarding those committed profit and charitable interests—and that Urban Land Institute, AZ, Southwest Au- trieved from https://www.firstplaceaz.org/ to the creation of more viable options. includes us all. tism Research and Resource Center, and transition-academy/overview/ Graduating to the couch should not be Arizona State University, Phoenix, AZ. Proposed Study to the only option for young adults with de- Knight Soul of the Community 2010 Knight Define the Marketplace velopmental disabilities. We are already AHN Virtual Tour of Housing Options. Communities Why People Love Where seeing them successfully navigate college, (n.d.). Retrieved from http://www.au- They Live and Why It Matters: A National As part of developing and enabling a find their niche in the workforce, give back tismhousingnetwork.org/education/virtu- Perspective (Rep.). (2010). Gallup. marketplace to mature, we need to start through volunteering, and be included in al-tour-housing-options/ speaking the same language. In many neurotypical social circles in the communi- National Core Indicators. (n.d.). Re- cases, we do not even have the words or ty. We are raising the bar on expectations, Autism Housing Network. (n.d.). Retrieved trieved from https://nationalcoreindicators. definitions in various sectors to empower new realities—and dreams. from http://www.autismhousingnetwork. org/ Human Services Research Institute consumers to communicate what they want org/ Madison House Autism Foundation (HSRI), The National Association of State and need. Desireé Kameka is Director of Commu- Directors of Developmental Disabilities Led by First Place AZ and AHN, and to- nity Engagement and Housing Networks, Braddock, D. L., Hemp, R., Tanis, E. S., Services (NASDDDS). gether with leaders from across the coun- Madison House Autism Foundation. For Wu, J., & Haffer, L. (2017). The State of try, we are advancing—and actively seek- more information, email info@madison- the States in Intellectual and Developmen- Roux, A., Rast, J., Rava, J., Anderson, ing support for—a sister study to Opening houseautism.org, call (240) 246-7140 and tal Disabilities (11th ed.). Washington, K., & Shattuck, P. (2015). National Au- Doors offering a market analysis that in- visit www.madisonhouseautism.org. DC: American Association on Intellectual tism Indicators Report: Transition into cludes universal nomenclature to describe Denise D. Resnik is Founder & President/ and Developmental Disabilities. Young Adulthood. Philadelphia, PA: Life the various housing models and long-term CEO, First Place AZ. For more informa- Course Outcomes Research Program, support service options available to poten- tion, email [email protected], call (602) First Place AZ. (n.d.). Retrieved from A.J. Drexel Autism Institute, Drexel tial developers and neurodiverse popula- 464-6620, and visit www.firstplaceaz.org. https://www.firstplaceaz.org/ University. tions. The report will also include research on the assessment/evaluation processes for individuals with autism or other IDD, in- Exhibit A cluding the alignment of support needs and interests in preparation for transitioning to their homes. Empowered with this information, we are also prepared to offer strategies for cultivating neighborhood collaborations and integrated communities, along with a “Supportive Housing Development Tool- kit” compiling promising and best-practice models of various housing developments. Ultimately, this overview and analysis will present the universal language offer- ing a clear description of housing and sup- port models despite variations among state government authorities, residents and fam- ilies benefiting from improved and eas- ier transition and long-term assimilation plans, as well as scarce funding saved from poor planning or misplacements. Most importantly, it will offer suggestions for creating accepting community cultures to enhance the lives of residents, resulting in opportunities for higher employment rates, increased support system, and reduced medical or other provider expenses. We will be introducing our first think tank advancing this important body of work at the First Place Global Leader- ship Institute fall symposium this October, 2018, in Phoenix: https://firstplacesympo- siumfall2018.splashthat.com/ Working together, we can build, grow and align communities to serve the vast and diverse needs of people with autism and other neuro-diversities by building a marketplace that is not only recognized and rewarded through market principles but documented through outcomes. By de- veloping new tools tracking quality of life and other factors, we can collectively de- termine whether emerging models are ef- fecting the desired change and, if not, offer recommendations for how to achieve the desired change. Without supportive housing options, lo- cal communities will disregard and miss out on the important talents and contri- butions of their neurodiverse citizens. We can create models for shared alliances and leveraged resources that encourage more public and private home and community options serving vulnerable adults and re- duce overburdened government budgets. PAGE 24 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2018

Safety from page 6 and feedback from teachers and students, and interact with diverse individuals in the heMovie.com, phone 661-347-8557. BE SAFE is currently being studied for ef- community they serve. Second, the police (social cognition); and summaries to cap- fectiveness as part of a National Institutes consider it “eyes-on” training, witnessing References ture main ideas. of Health study (Ravindran & McCleery, how diverse people on the spectrum act, BE SAFE can be used for individuals 2017). It will compare the effectiveness react and interact. Officers hear the range Iland, E. (2013). Be Safe The Movie. Santa with autism, other disabilities, or no dis- of BE SAFE to teach skills for interacting of communication styles. They can relate Clarita, CA: Camino Cinema. ability at all. The Movie has captions to with the police (the control condition) to a on a personal level and practice accommo- Iland, E. (2014). Be Safe Teaching Edition. ensure that Deaf individuals have access different technology platform. dating these differences. Santa Clarita, CA: Camino Cinema. to key concepts and vocabulary. Captions Safety can’t be left to chance. Experience can also help learners with ASD process Bridging the Gap Between Police Autism® and BE SAFE are useful tools for Iland, E. (2011). Drawing a Blank: Improv- information more effectively. The Movie and the Autism Community addressing this critical need for individu- ing Comprehension for Readers on the Autism has Spanish subtitles and the curriculum is als with ASD (and maybe even saving a Spectrum. Lenexa, KS: AAPC. available in Spanish to reach doubly at-risk While training both officers and individ- life). After first participating in Experience populations. uals with disabilities is essential, another Autism® and then being paired with an in- Medina Del Rio, L. (2018) Experience Autism: Effectiveness of an autism training program for BE SAFE Teaching Edition offers a dif- key element is necessary to promote safe- dividual on the spectrum at an Interactive law enforcement officers. ProQuest Disserta- ferentiated Companion Curriculum with ty: relationships. Sometimes encounters Movie Screening, one officer commented, tions Publishing, 10791743. Retrieved from lessons matched to each episode of the go wrong because officers and community “This is a game-changer.” https://search.proquest.com/openview/ca3e- Movie. Parents, educators and interven- members are unfamiliar strangers. A BE 906c9c235bc37bfbeb695e5dc662/1?pq-orig- tionists can select activities and materials SAFE Interactive Movie Screening (IMS) Emily Iland, MA, ET, is an award-win- site=gscholar&cbl=18750&diss=y to reach learners with diverse verbal and brings officers and individuals with ASD ning author, advocate and researcher, and cognitive abilities. Students can use the together to learn with and from one another. an adjunct professor in the department of Ravindran, V., & McCleery, J. P. Immersive vir- curriculum scripts to practice and roleplay At an IMS officers are paired with in- special education at California State Uni- tual reality as a tool to improve police safety scenes from the movie. dividuals on the spectrum. They watch versity, Northridge. She is the mother of in adolescents and adults with ASD. Retrieved from http://grantome.com/grant/NIH/R42- BE SAFE the Movie and Companion scenes from BE SAFE together. Then the a son on the autism spectrum, which in- MH115539-01 Curriculum can also be used to help learn- police practice specific skills with partic- spired her to personally train thousands of ers expand on concepts beyond the film, ipants, such as asking for help, following peace officers about ASD. Emily worked Reichow B., & Volkmar F.R. (2010). Social including preparing them for an evacua- instructions, and keeping hands to them- with Joey Travolta and young adults with skills interventions for individuals with autism: tion or an active shooter situation. It can be selves. The event promotes mutual under- disabilities to create BE SAFE The Mov- Evaluation for evidence-based practices with- streamed into classrooms or clinics in ABA standing, comfort, and trust. In addition to ie. She travels across the country to bring in a best evidence synthesis framework. Jour- format, via subscription from TeachTown. having fun and building safety skills, many the disability community and local police nal of Autism and Developmental Disorders, Students can go at their own pace, with participants report decreased fear and anx- together to learn from one another at BE 40:149-66. progress tracked electronically. Teachers iety around interacting with police. SAFE Interactive Movie Screenings. For Sobsey, R. (1994). Violence and abuse in the have access to curriculum materials to The police benefit from an IMS in multi- more information, visit www.BeSafeT- lives of people with disabilities: The end of build key safety skills for everyone. ple ways. It supports community policing, heMovie and www.ExperienceAutism.com silent acceptance? Baltimore, MD: Paul H. In addition to anecdotal success stories giving officers the opportunity to know or contact Emily Iland, emily@BeSafeT- Brookes Publishing.

Community from page 16 for the protection of all and participating and accepted. We know that something as needs, the results are truly gratifying, life in these types of events are important.” simple as an open house or community in- changing and empowering for all involved. that interactions with law enforcement can When asked why she felt it was import- troductions create a safe environment for Donna Davis is President & CEO, The be and must be done better. ant to bring youth from the community, our individuals and their neighbors. These DG Group. To learn more about Unique UPS makes it a priority to work with she replied, “Once you know someone types of actions work to benefit all in- People Services visit their website at www. community stakeholders to strengthen and build a relationship with that person, volved. Individuals have the right to inclu- uniquepeopleservices.org. and build communities of support. “At it changes your perspective. That is how sive living situations in their communities. UPS, we have a proactive approach that we all stay safe.” The only way for that to occur is to create References aids in the prevention of such irreversible Evidence supports that people with au- opportunities for a collective community tragedies,” said Yvette B. Andre. “Unique tism and disabilities face severe marginal- experience,” stated Yvette Andre. Autism Now https://autismnow.org/ People Services believes that inclusion ization, victimization, and crime. UPS has learned that by promoting in- in-the-community/safety/ and understanding are vital to a flourish- Autism Now reports that “Although tegrating experiences between its residents ing community,” she further stated. Their more research is needed, studies consis- and the overall community; it generates a Erika Harrell, Ph.D., Bureau of Justice approach helps them to include individuals tently show people with intellectual and positive ripple effect in the neighborhoods Crime Against Persons with Disabilities, in the mainstream of society. They provide developmental disabilities are more likely they serve, which continues to strengthen 2009-2012 - Statistical Tables Statistics, guidance and resources to community res- to experience violence than people without overtime. Working with community res- February 25, 2012 http://www.bjs.gov/in- idents, build relationships with local law disabilities.” In the latest data released by idents and law enforcement, acceptance dex.cfm?ty=pbdetail&iid=4884 enforcement and consistently engage pub- the U.S. Department of Justice’s Bureau of occurs, friendships build, and the support lic officials; a simple approach that works. Justice Statistics, “persons age 12 or older circle widens. David M. Perry, PhD, Lawrence Car- They realize that relationships are key. who had disabilities experienced 1.3 million Being a part of a community and feeling ter-Long, The Ruderman White Paper in At their most recent open house, the po- nonfatal violent crimes and for each racial included and safe is extremely important Media Coverage of Law Enforcement Use lice community relations officer attended, group measured, persons with disabilities to those individuals with intellectual dis- of Force and Disability: a Media Study and she brought along some community had higher age-adjusted violent victimiza- abilities and on the autism spectrum. While (2013-2015) and Overview March 2016 summer youth to introduce them to the tion rates than persons without disabilities.” community integration takes time and effort, http://rudermanfoundation.org/wp-con- residents. In a conversation with the offi- “We are founded on the principle that ev- with a sound approach, a knock on the door tent/uploads/2017/08/MediaStudy-Police- cer, she stated, “Law enforcement is there eryone deserves the right to be understood by a magnificent individual with special Disability_final-final.pdf

Biomarker from page 19 mately, metabolomics may be able to iden- validate these results while simultaneously Advisory Boards of Stemina Biomarker tify most children with autism.” investigating other metabotypes. Discovery, Inc. and Axial Therapeutics. had unique concentrations of specific In addition to enabling earlier diagnosis, “I’m optimistic this is not a one-off,” At the UC Davis MIND Institute, amino acids (metabotypes) in their blood. this work also could help generate targeted said Amaral. “There are going to be other world-renowned scientists engage in col- Though a 17 percent subgroup may seem interventions for specific ASD groups. Am- panels that can detect other groups of kids laborative, interdisciplinary research to small, it is actually quite significant. ASD aral points to phenylketonuria (PKU) as a with ASD.” find the causes of and develop treatments encompasses a complex array of symp- possible template. PKU is a rare disease in Other researchers included Alan M. and cures for autism, attention-deficit/ toms, and no one expected to find a single which the amino acid phenylalanine builds Smith, Joseph J. King, Paul R. West, Mi- hyperactivity disorder (ADHD), fragile group of markers that would diagnose all up, causing brain damage. However, rela- chael A. Ludwig, Elizabeth L. R. Donley X syndrome, 22q11.2 deletion syndrome, subsets. Rather, the researchers hope to tively small dietary adjustments can make and Robert E. Burrier at Stemina. Down syndrome and other neurodevelop- create a number of metabolomic assays a big difference. This work was supported by the National mental disorders. For more information, that cover all variations. “With just a simple dietary modification, Institutes of Health (NIH 5 R44 MH107124- visit mindinstitute.ucdavis.edu “The long-term vision is, once we’ve a child can move from being profound- 03 and 1R01MH103371), the Nancy Lurie This article is reprinted with permission been able to analyze all the data from ly disabled to one who lives a reasonably Marks Family Foundation and The Robert from the UC Davis Health. You may view CAMP, we would have a series of panels,” normal life,” said Amaral. “That’s the hope E. and Donna Landreth Family Fund. the original article, published on Septem- said Amaral. “Each of these would be able with autism as well.” David G. Amaral receives research fund- ber 6, 2018, at http://www.ucdmc.ucdavis. to detect a subset of kids with autism. Ulti- The CAMP researchers will continue to ing from Stemina and is on the Scientific edu/publish/news/mindinstitute/13135. AUTISM SPECTRUM NEWS ~ FALL 2018 www.mhnews-autism.org PAGE 25

Literacy from page 10 and high technology options (Dell, New- experiencing a story through their senses the school experiences of students with disabil- ton, & Petroff, 2017). (Devine, 2016). For more information ities (3rd ed.) to the story “Brown Bear, Brown Bear, on sensory stories, please visit http:// What Do You See?” By Bill Martin Jr. Visuals for Communication - Devine sensorystories.com/ Devine, A. (2016). Literacy for visual learners: To answer questions, the reader would (2016) explains that visuals are a part of Teaching children with learning difficulties to read, write, communicate and create. United have to know the meaning of the word everyone’s communication system and are • Using displays is another low technol- Kingdom: Jessica Kingsley Publishers. “see,” “Who did the blue horse see?” essential for individuals with autism. She ogy way to enhance comprehension by further discussed that pictures allow the op- making a book interactive. When cre- Grandin, T. (1995). How people with autism • Difficulty with interpersonal knowledge portunity to make requests, communicate ative with a story display, the reader will think. In E. Schopler, & G. Mesibov (Eds.), (Brown et al., 2012) feelings, and make comments. be able to answer questions, sequence, Learning and cognition in autism (pp. 137- The following are some examples of as- and build vocabulary (Devine, 2016) 156). New York: Plenum Press. Example: Understanding that David, sistive technologies that can be used to teach the character in “No, David!” by Da- learners with autism how to communicate: Conclusion Hayes, G., Hirano, S., Marcu, G., Monibi, M., vid Shanon, is offending various peo- Nguyen, D., & Yeganyan, M. (2010). Interactive visual supports for children with autism. Per- ple in his day to day life due to his dis- • Picture Exchange Communication Sys- Visual supports help to gain attention, sonal & Ubiquitous Computing, 14(7), 663-680. ruptive behaviors. tem (PECS) reduce anxiety, provide a focus on com- municative messages, and make abstract Hill, E., & Frith, U. (2003). understanding autism: • Difficulty with gathering information to Low technology option that teaches indi- concepts more concrete for all learners, Insights from mind and brain; Philosophical Trans- make inferences (Turner et al., 2017) viduals how to exchange a picture for a particularly those with autism (Rao et al., actions: Biological Sciences, 358(1430), 281-289. request (Devine, 2016). For more infor- 2006). Therefore, incorporating them into Example: Identifying conversation bub- mation on PECS, you may visit https:// the everyday classroom touches upon the Knight, V., & Sartini, E. (2014). A comprehen- bles and facial expressions to determine pecsusa.com/pecs/ implementation of a Universal Design for sive literature review of comprehension strate- how the pigeon is feeling in the book Learning. As a practitioner, incorporating gies in core content areas for students with au- “Don’t Let the Pigeon Drive the Bus” by • Gestures the use of interactive read-alouds not only tism spectrum disorders. Journal of Autism and Mo Willems. engages my learners, but provides them Developmental Disorders, 45(5), 1213-1229. Using gestures as communicative forms with opportunities to express their under- Margaret, W. (1987). The makaton vocabu- • Difficulty understanding someone else’s provide vocabulary and comprehension standing of a story by matching pictures to lary--uses and effectiveness. International Afa- or a character’s perspective (Turner et development. Gestures can be imple- story concepts. sic Symposium of Specific and Language Disor- al., 2017) mented through different versions of sign ders in Children, 2-15. language and a program called Makaton Mary Kate Ross teaches students with au- Example: How did the three bears feel (Devine, 2016 & Walker, 1987) tism for the Stamford Public Schools in Con- Nation, K., Clarke, P., Wright, B., & Williams, when Goldie Locks went into their necticut. She holds a Bachelor of Science C. (2006). Patterns of reading ability in children house? Or Why were the three bears up- • Big Macks and Switches degree in special education, a Master of Sci- with autism spectrum disorder. Journal of Autism set at Goldie Locks? ence in Autism, and a Sixth Year Certificate and Developmental Disorders, 36(9), 911-919. Mid technology tool that can have sym- in Assistive Technology. Mary Kate Ross may • Difficulty with the social and -pragmat bols associated with a pre-recorded mes- be contacted at [email protected]. National Reading Panel (U.S.), & National Institute of Child Health and Human Devel- ic aspects of language, specifically with sage and offer learners the opportunity to Lauren Tucker, EdD, is an assistant pro- opment (U.S.). (2000). Report of the National structuring a narrative to retell a story make choices and communicate simple fessor of special education at the Universi- Reading Panel: Teaching children to read: an (Turner et al., 2017) phrases (Devine, 2016). For more in- ty of St. Joseph in West Hartford, CT. She is evidence-based assessment of the scientific formation on Big Macks and Switches, also a practicing assistive technology spe- research literature on reading and its implica- Example: In the Three Little Pigs, the please visit https://www.ablenetinc.com/ cialist providing AT services throughout tions for reading instruction: reports of the sub- wolf blew down the straw house first, technology/switches the state of Connecticut. For more infor- groups. Washington, D.C.: National Institute of the stick house second, and attempted to mation about this article, please feel free Child Health and Human Development, Nation- blow down the brick house last. • iPad Application: Proloquo2go to contact her at [email protected]. al Institutes of Health.

Strategies an Assistive Technology High technology option that provides References Rao, S., & Gagie, B. (2006). Learning through see- for Supporting Learners with Autism a dynamic display for communication ing a doing: Visual supports for children with au- (Devine, 2016). For more information Braun, G., Austin, C., & Ledbetter-Cho, K. (2017). tism. Teaching Exceptional Children, 38(6), 26-33. When considering the following, it is on Proloquo2go please visit http://www. Intense intervention practice guide: Explicit in- important to note the definition of assis- assistiveware.com/product/proloquo2go struction in reading comprehension for students Turner, H., Remington, A., & Hill, V. (2017). Developing an intervention to improve reading tive technology, as stated in the Individu- with autism spectrum disorder. Washington, D.C comprehension for children and young people als with Disabilities Education Act 2004 Gaining Attention - Devine discusses the Brown, H., Oram-Cardy, J., & Johnson, A. with autism spectrum disorders. Education and (IDEA) as being “any item, piece of equip- importance of making books and reading (2013). A meta-analysis of the reading com- Child Psychology, 34(2), 13-26. ment, or product system, whether acquired appear interesting and fun in order to gain prehension skills of individuals on the autism commercially off the shelf, modified, or the reader’s attention. The following are spectrum. Journal of Autism & Developmental United States. (2011). Individuals with Dis- customized, that is used to increase, main- strategies recommended by Devine: Disorders, 43(4), 932-955. abilities Education Improvement Act of 2004. tain, or improve the functions of a child [Bethesda, MD :ProQuest] What is universal with a disability.” The continuum is com- • Sensory stories are a low technology op- Dell, A., Newton, D., & Petroff, J. (2017). As- design for learning? (2014). Retrieved from posed of low technology, mid technology, tion that may be used to assist children in sistive technology in the classroom: Enhancing http://www.udlcenter.org/aboutudl/whatisudl

Managed Care from page 17 the field.” icy and Research and VORYS Healthcare for Inclusion and Innovation “We are so pleased to have partners in Advisors.” and Innovation. “Partnering with experts this project with such a deep understand- To learn more about the technical assis- The NY Alliance for Inclusion and Innova- like NYU’s McSilver Institute, which has ing of managed care and what it takes to tance available, experts involved, and how to tion (New York Alliance), is one of the state’s headed up the Managed Care Technical operate in the managed care environment,” access available resources, visit http://files. largest associations of non-profit providers Assistance Center (MCTAC) for behav- said Michael Seereiter, Executive Vice constantcontact.com/5b48ae9f601/f722ef6d- advancing the interest of provider organiza- ioral health providers for the past several President and COO. “They include Manatt 92af-4b2f-aec3-3370ce40b955.pdf. tions and people with Intellectual and Devel- years, we can avoid reinventing the wheel Health, Negri Management Resources opmental Disabilities (I/DD). For more infor- and expedite bringing these resources to NYU’s McSilver Institute on Poverty Pol- About the NY Alliance mation, visit http://nyalliance.org/about.php.

Free Support Group for Families of Adults with Socialization and Life Skills Group for Adults with Asperger’s Syndrome and High Functioning Autism 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 This group is focused on Employment and Vocational Issues, College Coaching adult child impaired with Asperger’s Syndrome or High Functioning Autism. At many of our meetings, and Supports, Socialization, Self-Advocacy, Dating, and Relationships we have speakers address various topics of importance related to these syndromes. Website: www.ASDGroupsWestchester.com Website: www.FAAHFA.com Facilitators: Robin Kaufman, PhD, and Lauren Greiner, PhD Facilitators: Bonnie Kaplan, [email protected] | Judith Omidvaran, [email protected] [email protected] (914) 497-1590

Meeting Dates 2018: 11/18, 12/16 2019: 1/27, 2/24, 3/24, 4/28, 5/19, 6/9 Location: 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 ~ FALL 2018

Analyzing Health from page 13 may want to have a second, more specific across the database. Databases are struc- automatically. Beyond reducing work for field, like “lower-level bathroom” because tured to match the real-world situation staff, this type of workflow can give an or- ever, may discover a very specific area that that will give you enough information to for which they are collecting data; they ganization the peace of mind that important should be addressed first, as it causes the investigate if the environment played a are not merely large spreadsheets. Using alerts and processes that require action are most injury despite accounting for only a role in the incident. If so, that environ- the previous examples, the sleep, weight, not being missed. This workflow can mean small percentage of the overall behaviors. ment could be modified to make it safer for well-body, and incident databases can be the difference between treating proactively, This type of insight can then inform a more walking, or new policies, like not leaving a brought together in way which maintain re- like modifying the diet of an individual who focused, personalized treatment protocol floor wet, could be implemented. lationships between the data across all the is starting to gain weight at an unhealthy targeted towards the largest decrease in be- tables within all the databases. This con- rate, versus reactively, like acting only when haviors that causes injuries. Spreadsheets and Databases solidation of data results in far more robust staff has already visually noticed unusual reporting and analysis capabilities on the weight gain. Automating workflow can also Incident Tracking - Comprehensive inci- Spreadsheets - The first step to improved individual and organizational level. Con- help ensure your organization meets regu- dent tracking, often referred to as “unusual health informatics data collection is choos- solidation of data allows you to quickly an- latory requirements in much the same way. incidents,” provides your organization with ing the data collection platform. Spread- alyze the individual’s sleep quality versus an abundance of useful, actionable infor- sheets and databases are the two main tech- weight, and likelihood of involvement in The Final Analysis – Benefits to mation to improve the well-being of indi- nologies used for the recording of data, but an incident the following day, for example. Individuals, Staff and Organizations viduals and inform organization-wide sys- they are not interchangeable. Spreadsheets As long as there are common threads, like temic improvements that benefit all your are essentially tables in which data can be individual name, location, even specific in- Health informatics data empowers your individuals. In this way, incident tracking entered directly, manipulated by formulas, terventions, those relationships can be used organization to improve the health, safe- can be so much more than meeting regula- graphed and analyzed. Almost all organi- to connect and analyze data in bigger ways. ty and wellness of individuals, clients tory or internal reporting requirements; it zations work with spreadsheets, like Mic- At the organizational level, you can con- and staff, while informing decisions that can be the foundation to a better program. rosoft Excel and Google Sheets, on a daily nect the dots between specific locations, can improve the organization as a whole. Incident tracking databases tend to have basis. Spreadsheets are useful for smaller, or staff, or intervention types in your orga- Connecting the dots between individuals’ many dozens of measures, so it is important simpler datasets that have single tables, nization and analyze the interplay among health measures, outcomes, and organiza- to take the time to ensure you have identi- and are often the first choice for small or- them, discovering connections that inform tional measures can unearth invaluable in- fied the right measurements to record. After ganizations to get started organizing their program-wide improvements. sights that become the foundation of con- accounting for any measures (“fields”) re- health data in a format which can produce tinuous improvement. Adding automated quired by regulatory authorities, you want immediately useful graphs and charts for Workflow and Automation - Procedural, intelligence like workflow, regulatory re- to add your own fields that speak to kind analysis. reporting, and alerting workflow can be quirements, emailing, and alerting to your of reporting you want to get from the data- custom programmed into both spread- database applications brings further effi- set. For example, by regulation you may be Databases - Databases, like SQL, are quite sheets and databases. Often, rule-based, ciency and peace of mind to your individu- required to record the general location of different. A database is collection of data repetitive procedures like emailing a form al and your organization. the incident, like “residence,” for a fall that that is organized, usually into multiple to a supervisor upon submission or email- happened in the residence. But for the pur- tables of data with defined relationships ing nursing upon a well-body check report For more information, please visit www. poses of organizational improvement, you between the data from table-to-table and or weight issue are programmed to occur melmark.org, or www.melmarkne.org.

Santabarbara from page 14 bills, new funding and new legislation signed and related disorders. Training Program for First Responders into law that is making a difference for thou- Whether it’s helping a family find a program (Ch. 209 of 2018). plan to give all New Yorkers with disabili- sands of families. This year a number of key missing child or responding to an adult Michael is 16 now. He’s my inspiration ties a stronger voice. bills were passed in both houses and are now with autism whose behavior may be mis- and he’s my angel. He doesn’t talk much, signed into law. Among them was an autism understood, recognizing the signs of au- but he teaches me new things every day. Autism Spectrum Disorder Advisory Board training program for first responders. This is tism and knowing how to react is import- As a father, it’s hard to watch him struggle the first-of-its-kind statewide program that ant. This training is a valuable resource to with words and I know it’s hard for him With Autism Action NY, thousands of ensures police and first responders are prop- those serving in law enforcement and after to make friends, but he’s my best friend families have seen some big wins and im- erly trained to recognize the signs of autism years of working on this initiative, I’m so and whatever we do, we’ll do it togeth- portant steps taken towards addressing the and how to respond (Ch. 57 of 2018). very pleased to finally see it become a real- er. It’s from challenges in our life that we challenges we all face together. In 2016, With 1 in 59 children now born with ity here in New York. gain perspective, compassion and wisdom. the critical piece of my Autism Action Plan autism each year in the United States it is Over the years, despite the many challeng- was signed into law (Chap. 469 of 2016). essential that our first responders have the Standardized Autism ID Card es Michael and I have faced, we continue The measure created New York State’s first proper training. Individuals with autism on our journey together and we continue to Autism Spectrum Disorder Advisory Board like my son Michael often struggle with Also the first of its kind, a companion overcome. We are showing that disability to develop, implement and update a state- communicating, making eye contact, and bill was passed to make New York’s first does not define you and we hope the rest of wide Autism Action Plan, incorporate new responding to simple questions, even if standardized Autism ID card available to the world will follow. information as it becomes available, and it’s asking for their name. Across the coun- families and individuals, replacing local- established a central location for available try we have seen how routine encounters ly issued cards and homemade notes. Of- To contact New York State Assemblyman services. New York is now one of the only with law enforcement can escalate simply fered as a communication tool, it can help Santabarbara, call (518) 382-2941, email states to have a statewide Board like this. because they are misunderstood. The pro- describe some of the challenges a person [email protected], or visit gram was designed to help bring attention with autism may face and can also provide https://assembly.state.ny.us/mem/Ange- Statewide First Responder Training Program to areas that need specialized training so important information during an emergen- lo-Santabarbara. Correspondence may be that officers are better prepared when re- cy. First responders will be trained to rec- sent to: 433 State Street, Center City, Sche- Since then, the plan has grown with new sponding to those with autism spectrum ognize the card through the new Autism nectady, NY 12305.

Identification from page 15 2525, and visit www.childrens-special- Janvier YM, Coffield CN, Harris JF et al. Medicaid-eligible children with autism, Journal ized.org. (2018) The Developmental Check-In: De- of the American Academy of Child and Adoles- the child and family (see for example www. velopment and initial testing of an autism cent Psychiatry 41(12): 1447–1453. pcpcc.org). This approach benefits all and References screening tool targeting young children from may be especially ideal for traditionally underserved communities. Autism, DOI: Mandell DS, Wiggins LD, Carpenter LA et al. underserved populations. Baio J, Wiggins L et al. (2018) Prevalence of 10.1177/1362361318770430. (2009) Racial/ethnic disparities in the identification of children with autism spectrum disorders, Ameri- In summary, approaches to improve autism spectrum disorder among children aged 8 years-Autism and developmental disabilities Khowaja MK, Hazzard AP & Robins DL (2015) can Journal of Public Health, 99(3): 493-498. access and reduce disparities to care for Sociodemographic barriers to early detection monitoring network, 11 sites, United States, young children with ASD must include of autism: Screening and evaluation using the Palmer RF, Walker T, Mandell D et al. (2010) 2014. MMWR Surveill Summ, 67(6), 1-23. attention to improving applicability and M-CHAT, M-CHAT-R, and follow-up. Journal Explaining low rates of autism among Hispanic of Autism and Developmental Disorders 45(6): schoolchildren in Texas. Am Journal of Public format of screening tools, location of Dawson G, Rogers S, Munson J et al. (2010) 1797-1808. Health 100(2):270-272. where and how screening is provided, Randomized, controlled trial of an interven- communication between providers and tion for toddlers with autism: The Early Start Magana S, Lopez K, Aguinaga A et al. (2013) Zuckerman KE, Sinche B, Meija A et al. (2014) families, and methods to promote link- Denver Model. Pediatrics 125(1):e17-23. doi: age to services once children have been Access to diagnosis and treatment services Latino parents’ perspectives of barriers to autism di- 10.1542/peds.2009-0958. Epub 2009 Nov 30. among Latino children with autism spectrum agnosis, Academic Pediatrics 14(3):301-308.2014. diagnosed. All of these areas are needed disorders. Intellectual and Developmental Dis- to help ensure that all children with ASD Harris J & Norton A (2016) The Quick Peek orders, 51(3), 141-153. Zuckerman KE, Lindly OJ, Reyes NM et al. meet their potential. Program: A model for developmental screen- (2017) Disparities in diagnosis and treatment of For more information, email jharris@ ing within underserved communities. Infants & Mandell DS, Listerud J, Levy S et al. (2002) autism in Latino and non-Latino white families. childrens-specialized.org, call 908-301- Young Children, 29(4), 290–298. Race differences in the age at diagnosis among Pediatrics 139(5):e20163010. AUTISM SPECTRUM NEWS ~ FALL 2018 www.mhnews-autism.org PAGE 27

Subscribe to Autism Spectrum News Advertise in Autism Spectrum News

1 Issue 4 Issues (25% discount!) Yes! I want to receive each Quarterly Issue by Mail Business Card: N/A $600 Eighth Page: $350 $1,050 Individual/Family ($60/year) Quarter Page: $575 $1,725 Professionals ($75/year) Half Page: $875 $2,625

Small Group - 25 Copies Each Issue ($225/year) Full Page: $1,150 $3,450 Inside Covers & Back Page (please call) Large Group - 50 Copies Each Issue ($450/year) Honorary Sponsorship (please call) Name & Title: ______Name & Title: ______Address: ______Address: ______Zip: ______Zip: ______Phone: ______Email: ______Phone: ______Email: ______

Mail this form with a check made out to: Mail this form with a check made out to: Mental Health News Education, Inc. Mental Health News Education, Inc. 460 Cascade Drive 460 Cascade Drive Effort, PA 18330 Effort, PA 18330

To pay by credit card visit: To pay by credit card visit: www.mhnews-autism.org/subscribe.htm www.mhnews-autism.org/advertise.htm

Phone: (978) 733-4481 Email: [email protected] Phone: (978) 733-4481 Email: [email protected]

Promote Your Vital Programs, Services, and Events and Reach Over 100,000 Readers in the Autism Community Across the Nation! Your Advertisement Will Also Run in Color in Our Online Digital Edition!

Deadline Calendar & Ad Size Specifications

Deadline Dates Ad Sizes - In Inches Winter 2019 Issue - December 4, 2018 Width Height Spring 2019 Issue - March 1, 2019 Full Page (1) 10.4 12.8 Summer 2019 Issue - June 6, 2019 Half Vertical (2) 5.1 12.8 Fall 2019 Issue - September 5, 2019 Half Horizontal (3) 10.4 6.4 Quarter Vertical (4) 5.1 6.4 7 5 Quarter Horizontal (5) 10.4 3.1 1 2 Eighth Vertical (6) 5.1 3.1 3 4 6 Eighth Horizontal (7) 10.4 1.5

Full Page Half Vertical Half Horizontal Quarter V & H Eighth V & H Business Card (not shown) 5.1 1.5 PAGE 28 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ FALL 2018

AUTISM SPECTRUM NEWS Your Trusted Source of Science-Based Autism Education, Information, Advocacy, and Community Resources www.mhnews-autism.org

Since 2008, Families Have Trusted Autism Spectrum News for Answers

What Resources are Available in My Community? • Is This Treatment Safe for My Child? Where Can I Get Financial Planning Advice? • Where Can I Find Help With IEPs? What Happens When My Child Grows Up? • What’s New in Autism Science? I Just Want My Child to Have the Best Future Possible....

Subscribe to Autism Spectrum News Today!!

Yes! I Want to Receive Each Quarterly Issue by Mail Subscribe Online: Individual/Family ($60/year) www.mhnews-autism.org  /subscribe.htm Professionals ($75/year) Pay by Check: Small Group - 25 Copies Each Issue ($225/year) Complete this form, Large Group - 50 Copies Each Issue ($450/year) make your check out to “Mental Health News Education”

 Name & Title: ______and send to: Street Address: ______Mental Health News Education City: ______State: ____ Zip: ______460 Cascade Drive Email: ______Phone: ______Effort, PA 18330

www.mhnews-autism.org Autism Spectrum News is a Quarterly Print and Online Publication Published by Mental Health News Education, Inc., a 501(c)(3) Nonprofit Organization facebook/AutismSpectrumNews For information about advertising, subscriptions, or how to submit an article, twitter/AutismSpecNews contact David Minot, Publisher, at (978) 733-4481 or [email protected]