UTISM PECTRUM EWS TM A YOUR TRUSTEDS SOURCE OF SCIENCE-BASED EDUCATION,N WINTER 2016 INFORMATION, ADVOCACY, AND COMMUNITY RESOURCES VOL. 8 NO. 3 Technology’s Growing Impact on Autism

The Role of Novel Research Technologies in Disorders

By Rebecca M. Jones, PhD, MPhil these technologies are well suited to tar- Assistant Professor get, and future directions for the potential Department of Psychiatry of wearable devices in ASD. It is exciting Weill Cornell Medical College to consider how both mainstream com- NewYork-Presbyterian/Center for mercially available devices as well as the Autism and the Developing Brain development of new devices may change how we study ASD and ultimately help those with ASD and their families. obile devices are woven into Since the introduction of the iPhone in the fabric of our typical day. 2007, iPad in 2011 and Fitbit Flex (wrist Portable technologies such wearable device) in 2013 there has been an as the iPhone, iPad and wear- explosion in demand for mobile devices. Mable activity trackers like Fitbit have sig- At the end of 2013, 1 in 10 Americans over nificantly transformed not only how we the age of 18 owned an activity tracker (En- communicate but also enable us to col- deavor report). These devices are accessi- lect an enormous amount of health rele- ble and affordable to the public and there vant data and information (Kumar et al., is acceptance for using them regularly in 2013). The majority of parents and clini- practically all settings. Thus it is part of cal caregivers who interact with children our common landscape to see children and with Autism Spectrum Disorder (ASD) adults engaging with some type of portable have mobile devices and children with technology on a regular basis. As long as ASD find smartphone technologies par- there is demand, there will be motivation to ticularly engaging (Mazurek & Wenstrup, keep updating and refining these technolo- 2013; Shane & Albert, 2008). Thus, there (Shic & Goodwin, 2015) and provide In this article, I will discuss some of the gies to be applicable to a broad population seems to be a clear opportunity to harness meaningful feedback to families and cli- most exciting mobile and wearable tech- of users, including those who are on the flexibility and convenience of portable nicians that may expand treatment options nologies that are being used in research technologies to conduct research in ASD for the ASD population. settings, which aspects of ASD research see Novel Research on page 23

Using Technology to Foster Social Interaction

By Juhi Kaboski, PhD new world of learning opportunities that Director, Laboratory for did not exist a decade or two ago. How- Understanding Neurodevelopment ever, we need to strategically ensure that it University of Notre Dame is used for the benefit, and not detriment, of our children’s development. Moreover, it is of utmost importance that these nov- s parents watch today’s children el learning opportunities are appropriately play mindless and solitary vid- evaluated for their effectiveness. eo games for hours at a time, they may worry that digital de- Commonly Employed Use of Technology Avices are luring children away from social in School, Home, and Therapy Settings interactions with real life peers. This con- cern is more intense for parents of a child There are at least two ways in which with autism spectrum disorder (ASD) as computer and digital devices are incor- there appears to be a profound mismatch porated into therapeutic interventions for between their child’s (often obsessive) children with ASD. First, electronic devic- desires to engage in technology and the es and tablets can be used as an alternative/ child’s need to socially engage with other augmentative communication device. Sec- human beings in order to overcome chal- ond, a favorite electronic game or devices lenges in social skills. An evidence-based summer camp offers a group of technology-oriented is frequently used as a reward for cooper- As a parent of two children on the au- adolescents with ASD an opportunity to improve social and ating in behavioral programs. Electronic tism spectrum, I often find myself in the vocational skills while decreasing social anxiety devices are commonly used with children unsavory position of having to wrestle a with ASD in the home, school, and ther- laptop away from my video-game-drunk nology in a competition for my child’s at- should try to shield our children. Technolo- apeutic setting to encourage or facilitate child or threaten to delete an iPad app if tention and affection. gy is only a tool. As such, its utility or harm targeted behaviors. he does not behave. Sometimes I feel as Despite these potential drawbacks, tech- is determined by how we wield it. Today’s

though I am losing the battle against tech- nology is not an evil force from which we technology potentially presents an exciting see Interaction on page 21

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Chairman Cindy Alterson, PhD, BCBA, Principal and Program Director Jorge R. Petit, MD Devereux Millwood Learning Center Regional Senior Vice President, New York Market Beacon Health Options Joel Bregman, MD, Medical Director and Director of Psychiatry The Center for Autism Vice-Chairman Barry B. Perlman, MD, Legislative Chair Joseph D. Buxbaum, PhD, Director New York State Psychiatric Association Seaver Autism Center Icahn School of Medicine at Mount Sinai Secretary Peg Moran, LMSW, Vice President, Operations Susan M. Cortilet-Jones, MS, LMHC Center for Regional Healthcare Innovation Licensed Therapist/Adult Coaching Specialist Westchester Medical Center for Autism and Treasurer Discovering Your World Debra Pantin, LCSW, Associate Executive Director Stephen E. Freeman, LCSW VIP Community Services The Freeman Group Members of The Board Lynda Geller, PhD, Founder Peter D. Beitchman, DSW, LMSW, Principal Spectrum Services, A Cooperative of Independent Behavioral Health Consultation Practices and Organizations, New York, NY Constance Y. Brown-Bellamy, MPA Government Affairs Consultant Ami Klin, PhD, Director Marcus Autism Center Jonathan P. Edwards, LMSW, Program Consultant New York City Department of Health and Mental Hygiene Harold S. Koplewicz, MD, President Alan Eskenazi, MA, CPHQ, CASAC Child Mind Institute Senior Associate Executive Director, Department of Psychiatry Woodhull Hospital Cecelia M. McCarton, MD, Founder and Executive Director Mary Hanrahan, LCSW The McCarton Foundation Behavioral Health, Clinical Services Management The McCarton School (for Autism) New York Presbyterian Judith R. Omidvaran Joseph Krasnansky, LCSW, Vice President and Chief Program Officer Autism Parent Advocate, New York Lower Eastside Service Center Judith R. Omidvaran Theresa Pirraglia, Co-Founder and Board Member Autism Parent Advocate, New York FECA, The Foundation for Empowering Citizens with Autism Janet Z. Segal, LCSW, Executive Vice President Emerita Patricia Rowan, LMSW, Consultant and Advocate Four Winds Hospital Kid’s Connection Alan Trager, LCSW, Chief Executive Officer Westchester Jewish Community Services Howard Savin, PhD Naomi Weinstein, MPH, Vice President, Innovations Senior Vice President, Autism Quality and Outcomes ICL Beacon Health Options Kimberly Williams, LMSW, Vice President, Pat Schissel, LMSW, Executive Director Integrated Policy and Program Solutions and High Functioning Autism Association Mental Health Association of New York City Dianne Zager, PhD Alison Singer, President Michael C. Koffler Professor in Autism Autism Science Foundation Dyson College of Arts and Sciences, Pace University Richard Swierat, Executive Director Founding Chairman ARC of Westchester Alan B. Siskind, PhD, LCSW Fred Volkmar, MD, Director Executive Staff Yale Child Study Center Ira H. Minot, LMSW, Founder and Executive Director Dianne Zager, PhD, Michael C. Koffler Professor in Autism David H. Minot, BA, Associate Director Dyson College of Arts and Sciences, Pace University AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 3 Table of Contents

Technology’s Growing Impact on Autism

1 The Role of Novel Research Technologies in ASD 13 Autism and Technology: A Great Benefit and a Double-Edged Sword

1 Using Technology to Foster Social Interaction 14 Benefits of Video Consultation for Individuals with ASD

4 “CRISPR” Way to Cut Genes Speeds Advances in Autism 15 Technology: The Silver Bullet in Education for Individuals with ASD

6 The Dangers of Social Media for Individuals with Autism 16 The Techie of Tomorrow: Students with ASD Learn Technology

8 Advancing Care for the DD with Population Health Management 17 Dear World, From Someone with Autism

9 The Changing Times and Tools of Assistive Technology 18 Different, Not Worse

10 Reflections on 35 Years of Evolution of ABA as an Intervention 19 Creating an Online College Degree Program for Students with ASDs

11 Social Media Skills Empower Individuals to Imrove Quality of Life 20 Father’s Experience Developing Apps to Motivate Son to Learn

12 Community Partnership and Technological Innovation 20 Examining the Impact of the Global Autism Assistance Act of 2013

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“CRISPR” Way to Cut Genes Speeds Advances in Autism

By Jessica Wright, PhD TALENS. Still, each of these methods re- Spectrum quires researchers to first create a protein that specifically binds their target sequence. CRISPR, by contrast, is fused to a protein ess than three years ago, two called CAS9, which binds to DNA. Strands landmark publications in Science of RNA that can be designed for any de- gave researchers a quick and easy sired DNA sequence guide CAS9 to its tar- recipe for tinkering with genes.1,2 get. Designing a precise RNA to match a LThe papers described a new tool — a DNA sequence is considerably easier than modified enzyme called CRISPR-CAS9 creating the equivalent protein match. — that allows researchers to reach into the Last year, one of CRISPR’s inventors, genome and snip, or substitute, DNA se- Feng Zhang at the Massachusetts Institute quences with unprecedented precision and of Technology, engineered a mouse that al- efficiency. ready expresses CAS9 in all of its cells.7 In cells, researchers have used this Use of this mouse eliminates having to new system to disarm the culprit in sin- introduce CAS9 into the cells of interest, gle-gene disorders ranging from Hunting- allowing researchers to add only the guide ton’s disease to cystic fibrosis.3,4 And in RNAs needed. one study published last year, researchers One big advantage of CRISPR for creat- inserted a mutation into human stem cells A CRISPR-CAS9 gene editing complex example. The CAS9 nuclease ing mouse models is that it allows research- that could prevent HIV from sneaking ers to closely mimic the autism-linked mu- into the cells.5 protein uses a guide RNA sequence to cut DNA at a complementary site. tations seen in people. Traditional methods In the case of complex genetic disorders crudely knock out both copies of a relevant such as autism, the tool hews the way to- sachusetts Institute of Technology. Feng Making Mice gene, a distant simulation of mutations that ward clarifying the subtle effects of thou- is using the method to engineer marmo- might affect only one copy of a gene, for sands of autism-linked mutations. Using sets that lack the autism candidate gene Since the 1990s, researchers have been example. What’s more, a CRISPR mouse the method, researchers can create animal SHANK3. able to edit genes by fusing enzymes that model can be up and running — literally models endowed with these genetic quirks In one example of its potential for au- cut DNA with those that bind to specific — in three months as opposed to the typi- much faster and more efficiently. Tweak- tism research, in October researchers used sequences. The first of these tools, zinc-fin- cal six months or more. ing the genes of monkeys, something that CRISPR to examine the effect of mutations ger nucleases, relied on enzymes that each Another significant edge is that the meth- was challenging with conventional tech- in MeCP2, a candidate gene, on circadian bind to preset sequences of three DNA base od makes it possible to easily insert multi- niques, is also now a real option. rhythms.6 Some teams are trying to recre- pairs. In 2011, two independent teams de- ple mutations into a single animal, unlike “It’s a breakthrough technology, that’s ate autism-linked mutations in mice and in scribed a DNA-binding protein from bac- the traditional method of painstakingly for sure,” says Guoping Feng, professor stem cells, and to mutate combinations of teria that infect plants as the basis for a of brain and cognitive sciences at the Mas- genes in fish. more precise gene-editing system, called see CRISPR on page 28 AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 5 PAGE 6 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2016

The Dangers of Social Media for Individuals with Autism

By Nora Baladerian, PhD plan (1) details what one should know pri- eral. For three weeks I couldn’t leave the Executive Director or to using social media, (2) details strate- house. I thought if I did I would get my The Disability and Abuse Project gies to assess the conversation, and (3) lists legs chopped off. That was horrific.” what to do after receiving invitations or Kevin’s experiences of online bullying requests that do not fall into a category of also included “…people setting up Twitter he Disability and Abuse Project “things you would normally do with family accounts impersonating me. publishes a weekly news feed of and friends around.” One person was even pretending to all articles that have been pub- Here it is in the words of a man with au- be me and asking for money.” Although lished in the past week on abuse tism…his message is clear. There should bullied as a school student, he says, “…I Tof people with disabilities. These focus on be a plan for every social media user in- think cyber-bullying is more horrific than intellectual and developmental disabili- cluding awareness that there are people physical bullying. If someone hits you, you ties. Recently there has been an increase who will make requests that should not might get hurt, but you can walk away. Cy- of articles describing solicitation by per- be honored, they are bad and they do not ber-bullying stays with you, you can’t get petrators of abuse to people with autism mean well (posted 6/8/15): away from it.” In response to this bullying, and other developmental disabilities. All In the article, “Hate crimes aren’t taken Kevin notes that he “came off Twitter for a news feeds are on the homepage of dis- seriously enough” (RichardAult, 6/8/15), time, but I felt like I had lost my voice. It is abilityandabuse.org where articles are list- Author Kevin Healey wrote that he was how I communicate with the world.” ed alphabetically by state. “…was too frightened to leave his home I think the words of Kevin are powerful. A recent article posted on 8/24/15 de- for three weeks” after internet ‘trolls’ found I believe that by listening to someone like scribed how a teen with autism was asked his address and threatened to chop off his Kevin, many will become aware not only by a man to send nude photos of herself Nora Baladerian, PhD legs. With 118,000 Twitter followers and of the pain that can be suffered, but how and to meet him for sex: 14 years of campaigning for the rights of the risk of it can be significantly reduced “EUGENE, Ore. - A 57-year-old man Crime Prevention Council has a variety of people with autism to his credit, Kevin has by following the of safety while en- faces accusations he solicited nude pho- tips, including some on Internet Safety and become a public figure and an easy target joying social media. tos from a 15-year-old girl with develop- Social Media safety. Writer: Matt Spillane, for online bullies. The vile abuse he has An article posted on 8/24/15 clarifies the mental disabilities and attempted to meet [email protected].” received by anonymous trolls mocking his dangers (Staff, 2015): with her for sex, Eugene Police said.” He This report illuminates the dangers of condition (both Kevin and his twin brother A Somers couple is demanding $10 mil- was arrested on charges of Online Sexual perpetrators, whose purpose is to trick, Shaun are on the autistic spectrum) have lion in a lawsuit against a former college Corruption of a Child in the First Degree ensnare and violate. They have a plan. hardened him over the years. Kevin said, professor who was convicted of forcibly and Online Sexual Corruption of a Child Hapless social media users, however, do “Someone got hold of my e-mail address raping their autistic son. Paul S. Hines, in the Second Degree. “Police allege that not “have a plan.” It is my strong opinion and managed to find out what street I lived 74, was convicted of third-degree criminal Calvert communicated with the teen via and recommendation, that everyone have on. I got an e-mail from this person say- sexual act, a felony, is now a registered sex text message and Facebook….sought nude a plan, including their parents, friends or ing, ‘I know where you live, be careful, offender, and was sentenced to 10 years’ photos from the girl and tried repeatedly caregivers…and use it. Plan elements in- I’m going to come and sever your legs.’” to meet with her for sex.” The National clude a “before-during-after” strategy. The He says, “People with autism are very lit- see Social Media on page 30 AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 7 PAGE 8 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2016

Advancing Care for the Developmentally Disabled with Population Health Management

By Adam Sabloff ogy available today focuses on the man- industry is seeing an emergence of inno- CEO agement of traditional health problems, vative, comprehensive and—perhaps most Virtual Health meaning acute and chronic illnesses, and importantly—customized platforms. One is therefore largely ineffective in assisting example is Virtual Health, the pioneering with the care management of developmen- provider of next generation health care n the wake of the Affordable Care Act, tally disabled populations. These systems technology. Virtual Health has partnered the pace of technological transforma- lack the ability to classify challenging with leading human services agencies such tion on the patient management side behaviors, track behavior frequency and as Services for the UnderServed (SUS) of the healthcare industry has evolved intensity, manage medications and condi- to provide a set of transformational tools Irapidly, reflecting both regulatory shifts tions specific to developmentally disabled specifically supporting developmental- and technological advances. Population individuals, and monitor residential and ly disabled populations. With the help of health management (PHM) represents one community progress, all of which are cru- SUS, Virtual Health has been able to do potent example. A few years ago the term cial to providing holistic care and services. significant research and development in was barely in use. Today, however, PHM is In providing care to developmental- the area of workflow and pathways that one of the most actively used terms in the ly disabled individuals, it is common for support optimal management of develop- industry vernacular. With the shifting reg- multiple caregivers and staff members to mentally disabled populations, identifying ulatory landscape, healthcare as a whole support a single consumer, often entering the unique needs of behavioral health spe- is realizing greater patient engagement, assessments in pen-and-paper formats. The cialists and other experts in the field, and collaboration and coordinated interven- unfortunate end result is error-prone paper delivering a highly specialized software tions. A number of specialized service co- records incorporating different terms and solution. By grafting a purpose-built set of ordination platforms have appeared to ad- descriptive language that require a labori- mental health tracking tools into its med- dress this need. While such platforms are Adam Sabloff ous and manual process to properly collate, ical management and population health rapidly securing a stronger foothold, many input into an electronic system, cleanse for backbone, Virtual Health has been able to of them are either rigidly specific to the As a category, developmentally disabled data analysis and assess on an apples-to-ap- provide a holistic, consistent, and technol- environment in which they operate, or too populations are complex by nature and re- ples basis. As a result, it has been challeng- ogy-driven process for the management of expensive, especially for the organizations quire highly trained behavioral health ex- ing to identify care gaps and determine op- developmentally disabled individuals not with the greatest need (e.g., the nonprofit perts who are equipped with specialized timal treatment protocols for such complex, previously possible. and service-oriented sectors). Thankfully, skill sets and hands-on experience. These specialized populations. Thus, any tool that A key benefit of this framework is the innovations in PHM are offering valuable populations also require high volume us- can address the underlying challenge of ability to layer analytics for the purpose of solutions to improve quality of care for de- age of specialized residential facilities. providing better quality, cost-effective care conducting both retroactive and predictive velopmentally disabled patients, as well as The combination of both these elements to these populations will have significant research and analysis, allowing program increasing operational efficiency and low- presents a unique challenge in the world of social and financial valuation. ering costs. healthcare. Much of the existing technol- To solve these unique challenges, the see Advancing Care on page 22 AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 9

The Changing Times and Tools of Assistive Technology: One Man’s Story of College Success

By Dena Gassner, MSW filter out lighting that makes visual distor- Director tions disappear. This was a transformational Center for Understanding intervention. This assistive technology pre- vented him from needing medication, the seizures stopped immediately, and he no atrick Kelty is a 27-year-old adult longer required pull out for sensory work. with an autism spectrum disorder This allowed for more time on task in class, whose life was changed by multi- and a more focused effort from him. ple forms of assistive technology. PFrom that first elementary school reading Middle School tool, his life has immensely improved. Upon starting middle school, the class Elementary School settings were too toxic for him to re- main. Bullying and constant struggles to In his elementary years, PK (as we call get what he needed became too burden- him) benefited from the symbolic read- some so he was placed in a private school ing intervention I mentioned, but we also with small classes and a focus on assis- noticed that anytime we reduced auditory tive technology. There he learned to key- input and used symbols or visual instruc- board/touch type with high accuracy and tions, he was more settled and more able ultimately, higher and higher speed with to perform. He loved playing games on the games designed to reward him for these house computer. And we learned that if he skills. But due to the unreasonable delays spoke what he knew, he was more able to he had endured in trialing assistive tech- demonstrate his competency. His language nology, the fluency he needed to transi- was not well developed, but with interrog- tion from simple keyboarding tasks to atory prompts, he could, with patience, Dena with her son Patrick Kelty fluid, effortless transfer of knowledge to communicate much more than people the keyboard was still lagging. He contin- presumed he could possibly know. Visual tigued quickly. His torso struggled to sup- Also, he developed seizures in the 3rd ued to use pencil to paper for simple, one- schedules and reminder prompt strategies port him in a strong seating posture, which grade from the open classroom setting that work tasks, circling responses and math helped him have a more predictable work is necessary for writing tasks. All of this he was in. These are classrooms with no tasks. There, the school introduced read- at school and home. He was also diagnosed increased his frustration so dictation was walls and up to 100 students in a very large, ing software, but it wasn’t Kurzweil yet with low muscle tone that could be seen in used in greater intensity and his legibility acoustically challenging room. We learned flat, non-muscular hands that tired and fa- remained far below grade level. of Irlen Lenses that are colored lenses that see College Success on page 24 PAGE 10 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2016

Applied Behavior Analysis as an Intervention for Individuals with Autism: Reflections on 35 Years of Evolution

By Rita Gardner, MPH, LABA, BCBA Mary Jane Weiss, PhD, BCBA-D and Frank Bird, MEd, BCBA Melmark

t is difficult to find the words that best describe the evolution of autism treatment over the past 35 years. The science of applied behavior analysis I(ABA) has changed substantially over the last 35 years. In 1980, autism was con- sidered to be a low incidence disorder that was not as well understood as it is in 2015. In 1980, individuals with autism were routinely diagnosed after the age of six. Specialized programs were few and far between. Effective treatments were in the infant stages of their development. Ap- plied behavior analysis itself was a young Rita Gardner, MPH, LABA, BCBA Mary Jane Weiss, PhD, BCBA-D Frank L. Bird, MEd, BCBA science, and the application of it to autism was even younger. Lovaas’ revolutionary they were not yet interpreted, analyzed, are broadly defining technology to include individuals who were not “classically” study demonstrating the power of ABA in and treated with function in mind. Treat- the identification of new ways to under- autistic were not understood to be on the changing the behaviors of individuals with ment still relied on the use of aversive pro- stand and treat autism spectrum disorder. spectrum. Furthermore, intervention was autism was still seven years from publi- cedures to a much greater extent than they New technology has influenced interven- a formidable task when individuals were cation (Lovaas, 1987). Early intervention do in 2015. The assessment of generality, tion dramatically in diagnosis, the assess- not diagnosed as toddlers. The majority of was not yet a reality for this population of maintenance, and social validity were in ment and treatment of challenging behav- learners were non-vocal, lacked learning learners, given the late initial diagnosis. their earliest stages. iors, skill acquisition, and data collection. readiness skills that had failed to develop Behavioral intervention was available in Looking at the evolution of the field As mentioned above, diagnosis in 1980 in the preschool years, and had well-es- some specialized settings, though few peo- through the lens of time’s passage, it may occurred most often at the end of preschool tablished repertoires of automatically rein- ple with ASD had access to them. In some be helpful to see it as a function of the im- or in the early elementary years. Diagno- forced (self-stimulatory) behaviors. ways, behavioral interventions lacked nu- pact of technology on assessment, treat- sis was generally done through informal ance. While behaviors could be changed, ment, and the evaluation of outcomes. We assessment and parental interview. Many see Reflections on page 22 AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 11

Internet and Social Media Skills Empower Individuals with DD to Increase Social Interactions and Improve Quality of Life

By John Lampen, RBT tered these steps independently, they were and Vivian Attanasio, BCBA instructed on the purposes for the icons lo- Services for the UnderServed cated on the opening page. Many of the individuals were confused by the idea of the internet, specifically any of us remember a time Google search. They were fascinated by when paper and pencil were the implication that all of the answers to the only way of recording in- their questions could be answered by the formation and encyclopedias “click of a mouse.” Board Certified Be- Mand journals were located in a library for havior Analysts (BCBAs), developed task research and review. Once the internet was analyses (small steps of a larger task) for invented our lives changed in many ways. the registered behavior technicians to We had access to an infinite amount of in- teach the individuals how to access Google formation across a never ending variety of search, create an email and design a Face- topics. We were soon able to send a note book page. Data were collected to deter- through email in real time and look up old mine mastery for each step in the process friends using social media. and additional prompts were added to en- Nowadays our personal lives are very sure skill acquisition when needed. public and employers use social media to The individuals are now able to take a determine a possible employee’s charac- Lonzo is working on sending an email to his behavior intervention picture with their cell phones, text it to ter by the information that is contained on specialist to ask when she will be visiting him next. a friend and upload it to their Facebook his/her Facebook page. For some individ- page. They are able to advocate for them- uals with disabilities, the technological At Services for the UnderServed, indi- so excited to be using technology like their selves and ask questions to their service revolution passed them by. Many of our viduals are learning to access information contemporaries. providers through email without having individuals were dependent on staff mak- on the internet based on their interests, Services for the UnderServed was award- to wait for their next visit to the residence. ing telephone calls for them or commu- write emails as a way to stay in touch ed a Transition to Independence BIP grant They are able to surf the net to learn more nicating information about them to their with friends, family and professionals as by the Department of Health in August about their areas of interests, get the bus family members on their behalf. Individ- well as developing a Facebook page to 2014. As a part of that initiative, objectives or train schedule or the address for a new uals with developmental disabilities were share important events in their lives with were developed to teach individuals how to restaurant that they want to try out. They not exposed to the world of technology, friends and family. They are also learning operate laptops, desktop computers and/or are also able to purchase items from stores possibly because professionals did not be- to take pictures with their cell phones and tablets. This included turning it on, enter- and concert tickets using the internet. lieve these were functional skills for them send text messages. This has opened up so ing a password and manipulating a mouse to learn. many opportunities for them and they are or mouse pad. Once the individual mas- see Empower on page 18 PAGE 12 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2016

Community Partnership and Technological Innovation

By Jordan Jankus other residential setting, an individual had Technologist, Arc of Westchester medical complications dealing with renal and Technology Navigator Fellow, difficulties. With the use of apps and other The Arc of The US technologies, including a digital medica- tion reminder device, the nursing faculty and student interns from Mercy success- s a great example of communi- fully taught her to better monitor her med- ty partnership and technologi- ications and dietary requirements resulting cal innovation, Jordan Jankus, in a higher quality of life. Technologist at Arc of West- Arc of Westchester and Mercy College Achester, shares some background about Arc have also partnered on several well-attend- of Westchester’s partnership with Mercy ed public events which showcased tablet College in Dobbs Ferry, NY. and app technology for families and profes- Since 2014, faculty and student interns sionals in the community. The most recent from Mercy College, led by Joan Toglia, conference, Transitioning with Technolo- Dean of Mercy’s School of Health and gy, was held in November and illustrated Natural Sciences, have been visiting the how technology, both low and high tech, agency’s residences and other day program might serve as a valuable resource to help sites where Arc of Westchester serves high-school students with autism and oth- 2,000 people with autism and other devel- er developmental disabilities make a more opmental disabilities each day. The Mercy successful transition to the adult world. College team has been working with Arc Mr. Jankus stated, “Technology holds such of Westchester staff to develop solutions; Students from Mercy College demonstrate some of the latest apps potential for people with disabilities, espe- often involving technology resources, such cially those with cognitive challenges and as tablets and applications (apps), to ad- to parents and professionals at a recent Arc of Westchester’s our partnership with Mercy College pro- dress some of the daily needs of the people conference focusing on technology vides a great vehicle for exploring those they serve, with the goal being to increase possibilities.” He also emphasized the their functional independence and inclu- helping develop touch screen interfaces for es, an individual had difficulty preparing importance of first focusing on the person sion in community life. the imaging equipment so that it will be for his day on a timely basis. Mercy Col- and their immediate need and not just tech- eDocNY, a technology-based social ben- more accessible to individuals with cogni- lege staff and the direct support profes- nology. He went on to say, “If technology efit enterprise created under the umbrel- tive challenges. This new technology will sionals analyzed the tasks that the person can provide a solution, that’s great, but it’s la of Arc of Westchester, is an electronic open up employment opportunities for in- needed to accomplish and they developed not always the case. The solution might be document management business that helps dividuals with autism and other intellectual a scheduling program to help him complete something as simple as a poster-based its clients transition to paperless workplac- and developmental disabilities. those tasks in a timely manner and get out es. At eDocNY, Mercy College faculty is In one of Arc of Westchester’s residenc- into the community more efficiently. In an- see Partnership on page 18 AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 13

Autism and Technology: A Great Benefit and a Double-Edged Sword

By Karl Wittig, PE with Asperger syndrome, I learned that one keyboard (especially portable and laptop Advisory Board Member of the few statistical correlations among computers), which was of great help to GRASP people with autism is that they are much nonverbal individuals with autism, not to more likely to have a close family member mention those with poor coordination or in certain occupations, of which engineer- difficulties with handwriting. Along with ndividuals with autism have long had ing is especially common, than are the ma- the proliferation of educational uses for great affinity for and been involved jority of people. In fact, my father had a de- computers, a variety of assistive applica- with technology, so it is only fitting gree in electrical engineering. Because my tions were developed to help children on that modern technology is becoming parents divorced very early, though, I bare- the spectrum with their challenges, par- Iof greater value and significance to the ly even knew him and he had no influence ticularly those involving social learning. autism community. I am able to appreciate on me in this regard. Unlike most people, With the development of even more por- this both as an adult on the autism spec- I did not develop these interests through table devices like smartphones and tab- trum and as a long-time electronics engi- a role model, as nobody else in my fam- lets, the number of assistive technologies neer in research and development. I also ily or environment had even the slightest for individuals with autism has explod- belong to the generation of engineers that technical inclination. Instead, I gravitated ed. These serve the breadth of the autism created many of the technologies that we towards them with no external influence spectrum, from severe to mild, as well as all use today, and which have had such whatsoever. When I informed a half-sister the age range from children to adults. In transformational effects on our society and (from my father’s subsequent marriage) of particular, those for organizing time and on the way that many of us live our lives. my diagnosis, she told me of her suspicion other resources are of great help to anyone Personally, I was involved in the design of that he might have been on the spectrum with executive functioning deficits, which early prototypes for the digital high-defi- as well. With the new expanded definition many on the autism spectrum have. nition television and broadcasting systems of autism, I found that individuals on the Probably the most notable application of that are in use today. Karl Wittig, PE spectrum were themselves more likely to technology to help children with autism, Technology has been a very important be in one of these occupations than was however, has been the use of small (under part of my life since early infancy, when and the one which I maintained for the lon- the average person. In other words, I was two-foot) human-like robots that I saw ex- I became “obsessed” with anything me- gest time. I figured out how things worked far from being the only autistic engineer hibited at recent autism conferences. These chanical or electrical and with taking apart by taking them apart and re-assembling around; there certainly were many others. robots, currently offered as products by and assembling anything that I could get them, eventually learning how to repair I even remembered some former co-work- such companies as RoboKind and Aldeb- my hands on. Although undiagnosed at the them. I especially enjoyed finding old radi- ers and classmates who, in retrospect, had aran Robotics, are specifically designed to time (the broader autism spectrum would os, televisions, and other electronic devic- likely been on the spectrum as well. teach social skills to young children on the not even be known for many years), this is es, taking them home, and getting them to During the time since my diagnosis in spectrum, and are very impressive in both now recognized as a classic autistic special work. This led to my studying physics and August of 2000, I have learned about the their technological capabilities and the re- interest, and a fairly common one at that. electrical engineering in college, and to a many ways in which assistive technologies ceptiveness of children with autism to I had a number of special interests while career as an electronics engineer. are used to help people with autism. Prob- growing up, but this was both the strongest Years later, when I was finally diagnosed ably the first of these was the computer see Benefit on page 25 PAGE 14 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2016

Benefits of Video Consultation for Individuals with Autism Spectrum Disorders

By: Elena Zaklis MA, BCBA, and the US. This density leads to more traffic, Glenn M. Sloman, PhD, BCBA-D, NCSP which results in lengthy car rides for rel- Behavior Therapy Associates atively short distances. By allowing care- givers and professionals an opportunity to consult with those knowledgeable about ndividuals with an Autism Spectrum issues faced by those with an ASD remote- Disorder and those supporting them ly, quality services may not have to be are utilizing technological innovations compromised for a lack of psychologists more than ever before through the or local board certified behavior analysts Iuse of portable electronic devices in the (BCBAs). Psychologists, psychiatrists and form of tablets, smart phones, and laptops. BCBAs have begun to expand their ser- These devices are used to assist communi- vices by using a video consultation model. cation needs as well as to serve as reinforc- Using a secure and HIPAA compliant tech- ers to access preferred stimuli (videos and nology, video consultation has provided music). The growing use of technology families and professionals access to a num- has been used by educators and parents to ber of behavior analytic services and train- help generalize skills taught in classroom ings. Recently researchers have provided academic settings/day programs to various evidence on the benefits of how behavior community settings. parent training (Fisher et al., 2014.), treat- Professionals may use these same devic- ment of pediatric feeding problems, brief es to help deliver reinforcement in addition problem behavior assessments, and inter- to collecting data on acquisition programs, vention consultation can occur remotely recording observational data to assess func- Elena Zaklis MA, BCBA Glenn Sloman, PhD, BCBA-D, NCSP (Wacker et al., 2013). Results show train- tion, and monitoring the effectiveness of ing sessions that used video consultation problem behavior reduction/replacement may include speech therapy, social skills isodes (i.e., tantrums, self-injury) when have led to significant improvement in the programs. The beauty of many of these de- groups and sometimes feeding therapy. routines are disrupted. These factors to ac- target behavior. By providing video con- vices is the inclusion of video cameras. One Navigating to after school therapies and cess services, and their cascading effects, sultation, caregivers and professionals may area that this type of technology may help activities may cause stress for any parent, can cause unnecessary hardships for all collaborate at the same time from remote to better their lives is in the use of video and considering parents whose children parties involved. locations. This service may help to ensure consultation for professional services. have difficulties with transitions, the addi- Video consultation helps to circumvent that therapeutic services are provided as in- For children with an Autism Spectrum tional stress of possibly being late or sitting the issues surrounding transportation and tended and without disruption. For exam- Disorder, caregivers often find that their in traffic prior to an appointment. Further- transition difficulties for those in need. ple, some therapies are provided initially at children require additional services and more, individuals diagnosed with an ASD Although our home state of New Jersey a clinic setting (e.g., feeding) with the goal therapies than those provided during a typ- may have difficulties shifting routines and is relatively small, we have the highest ical school day. Those additional therapies may engage in problematic behavioral ep- density of individuals per square mile in see Video on page 23 AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 15

Technology: The Silver Bullet in Education for Individuals with Autism

By Gloria Satriale, JD, MEd, BSL retention and increase learner engagement and Thomas L. Zane, PhD, BCBA-D in an epoch of increasing globalization Preparing Adolescents and and diversity. Furthermore, increasingly Adults for Life (PAAL) available technology provides more oppor- tunities for electronic data collection with real-time data graphing, analysis, and ar- he advent of the iPad and iPhone chiving. These enabling technologies4 are and a host of other hand-held de- reshaping and reframing the practice of vices have transformed the way teaching and learning in education. the world gathers, manages and But remember, when addressing techno- Torganizes information. One device now en- logical applications in education, it is im- compasses just about everything we need to portant to understand exactly what the use efficiently execute our lives on professional of the word “technology” is referring to: and personal levels. The same advantages and applications of these devices that we Tech nol o gy [tek-nol-uh-jee] noun enjoy as typically developing individuals apply to individuals with developmental 1. The⋅ ⋅branch⋅ of knowledge that deals disabilities including individuals on the au- with the creation and use of technical tism spectrum. The access to information, means and their interrelation with life, music, video and a variety of applications society, and the environment, drawing that assist with communication and exec- upon such subjects as industrial arts, utive function are both important supports Gloria Satriale, JD, MEd, BSL Thomas L. Zane, PhD, BCBA-D engineering, applied science, and pure and key reinforcers to individuals with science. (emphasis added) autism and function to enhance quality of ly devised for special education purposes new “adaptive” uses that are decreasing life on almost every level. Parents and cli- exclusively. These assistive technology1 stigma and increasing generalized use of 2. The terminology of an art, science, nicians regularly report that children with devices are expensive, complicated to use technology across environments. Portable etc.; technical nomenclature. autism are drawn to technological devices (in terms of requiring sophisticated train- devices, such as iPads, iPods, iPhones, or and researchers have noted the importance ing in order to operate them) and are most PDAs have the potential of taking teach- 3. A technological process, invention, of devising treatments that take advantage often bulky and stigmatizing. Today, read- ers out of the equation3 in the instructional method. (emphasis added) (Merri- of this fascination (Colby, 1973). ily available technology is transforming interaction and providing widespread op- am-Webster, 1994) Technology today holds great promise the way we approach education.2 These portunity for community immersion and for helping students with disabilities learn, “retail” devices are easy to use, univer- acceptance. Additionally, new research Technology does not, therefore, refer ex- communicate, and function effectively in sally understood, portable and typical in examines how mobile applications such as clusively to devices (iPads, etc.) even the modern world. Historically, the use of society. These advances in technology are Smartphones, Skype and Texting Technol- technology was limited to devices special- reinventing typical uses of devices creating ogies can increase student engagement and see Silver Bullet on page 27

A Community-Based, Specialty Educational and Adult Habilitation/ Vocational Program for Individuals with Autism 14-21+ • Life Skills and Social Training • Community Support / Training • Competency–based Staff Training • Data-driven Decision Making • Use of Research Based strategies • Use of everyday technology to support students

Preparing Adolescents and Adults for Life (PAAL) 100 East Lancaster Avenue, Downingtown, PA 19335 www.paalprogram.org 610-873-6291 [email protected] PAGE 16 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2016

Becoming the Techie of Tomorrow: Students with ASD Learn Technology

By Beth Rosenberg, MA, MSEd makes it comfortable for many of these Founder and Director youth to work with. Individuals with ASD TechKidsUnlimited.org may be the best suited to code but students with disabilities who are school age have been consistently left out of this conver- here’s a lot of talk about why sation. In addition, we know that students teaching kids technology, in par- with ASD are big consumers of technology ticular programming, in today’s - how do we make them into producers of educational landscape is good for digital culture? Tstudents. Nearly every other week there Gary Moore and Dan Selic from the seems to be some major news announce- nonPareil Institute in Plano, Texas, start- ment around STEM (science, technology, ed a combination-training program and engineering, math), STEAM (science, software company for individuals on the technology, engineering, art and math), CS spectrum. According to The Verge, “Non- (computer science) and even IT (informa- Pareil is just one of a handful of US orga- tion technology) education. There’s also nizations that are dedicated to training and a current rush for computer science to be employing autistic young adults — which taught in all NYC public schools within are estimated to comprise 1 to 1.5 million the next ten years by Mayor De Blasio in Americans — who demonstrate valuable a recent New York Times announcement. Beth Rosenberg, Founder and Director of talents in technological realms.” The same There are tons of technology camps and TechKidsUnlimited.org and her son. with UltraTesting, a headhunter-type pro- workshops for kids, apps to help students gram for young adults with ASD in NYC. with the pre-cursors to learning program- today’s society, students with ASD are still tism and hope that tech can provide a ca- In San Francisco, Specialists Guild trains ming, pre-college programs for gifted high confronted with biases, prejudice, and lack reer path and a means to financial security. autistic interns as software testers and then school students and a bunch of start-up or- of opportunities. Less than half of students At the same time, employers are beginning works to place them in full-time jobs. Oth- ganizations who are putting out online pro- with disabilities graduate from high school to see advantages to hiring people with au- er organizations like AspiraTech in Chi- gramming curriculum step-by-step for the and even fewer are privy to meaningful tism, many of whom have strengths that cago and , a Denmark tech novice coders in the making. However, the jobs. Unemployment rates are extraordi- lend themselves to working well with tech- organization that recently opened its doors question remains, can learning the tools of narily high for adults with autism and yet nology, such as being able to stay focused in the US, is also helping to train young technology also be beneficial for youth on there are few training programs for young for long periods of time and to perform re- adults ages 18 and above with ASD in the the autism spectrum? students geared to this population. petitive tasks with accuracy.” tech industry. According to , advocates According to a November 2015 article Many children on the spectrum intuitive- Dr. Patricia Evans, a neurologist at Chil- for those with autism estimate that up to from The Hechinger Report, “a growing ly understand technology for these reasons dren’s Medical Center in Dallas, says nine out of ten adults with autism over age group of educators sees technology work and more. Computer code is predictable, 21 are unemployed or underemployed. In as an ideal field for some adults with au- rote and follows a set of finite rules - which see Techie on page 30 AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 17

Dear World, From ing on the beds and wheeling the suitcases around, I go quietly into each bathroom Someone with Autism and find the soap. We had dinner in a crowded restaurant. I could tell everyone around me was hap- Editor’s Note: I wrote this from my son Jack’s py-happy-happy, but I could not stop wor- perspective, based on conversations and rying about school. I was worried about observations of him in Disney and in life. missing something fun like a movie during class, and I kept asking my mother over Dear World, and over to e-mail my teacher. There was a man sitting right behind me Last week my family went to Disney. We and he was laughing so hard and weird it went to the one in Florida, not California. sounded like a donkey who had just heard The one in California is called Disney the funniest joke ever. Land and it opened on July 17th, 1955. Dis- Then my father ordered something pink ney World opened in 1971. and spiny called crab legs, and I could Anyway, my mom and dad picked us all smell their fishy smell and it bothered me. up from school at 12:14 on Tuesday after- And there was a woman at the table next noon. I was in science and I was very sur- to us who was wearing a string of Christ- prised when I heard my name on the loud- mas lights around her neck, and they were speaker. When I got in the car they told my blinking on and off and on and off over and three brothers and my sister and me that we This is me and my family right before we went on a water ride. over again. were going for a flu shot. We were all very That’s why we’re wearing those weird bag things called ponchos. All of a sudden my brain could barely mad about that. breathe. It was already 9:23 PM and I real- Then they pulled the car over and said, about trips. I always want to pack my own didn’t have any water in it but after a while ly like to be in bed by 8:30 PM and because “Why don’t we go to Disney instead?” suitcase full of the things that make me feel she shouted, “We are not taking that hu- of this laughing and the blinking and the I didn’t know what to think about it. I calm inside, like my special bunny and my midifier, Jack! Stop driving me so crazy!” smelling I felt like my skin was trying to was happy, but I also like to know about Chapsticks. We got to Disney around 6:00 at night, come off of my face. things a long time before they happen so I One time we argued for two hours be- and the first thing I did as soon as we got I tried doing my newest trick, which is can think and talk and plan for them. cause I tried to pack my humidifier for to our hotel was unwrap everyone’s soap making my fingers dance and twitch in But this time my mom was all sneaky our skiing trip. I kept showing her how it in the bathroom. I do this every time we go about it, because she hates when I know would fit into the suitcase fine as long as it to a hotel. While everyone else is bounc- see Dear World on page 25

“What Color is Monday?” “Someone I’m with Has Autism” Now Available! Follow Carrie’s blog posts and heartwarming books: carriecariello.com facebook.com/whatcolorismonday amazon.com/Carrie-Cariello/e/B00J2N0CBI/ PAGE 18 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2016

Different, Not Worse

By Matthew Ratz, MEd, CESP My role as a training program coordina- With the ever-rising incidence rates of Training Program Developer and tor and case manager involves my devel- autism, the latest CDC rates stating 1 in 45 Advocate for Adults with Autism & I/DD oping training activities for people with people are diagnosed with an autism spec- autism; I build tools and exercises through trum disorder, it has become increasingly which individuals can learn technical job important for society to examine its values hat would you say are qual- skills. With the tools I have designed, indi- that contribute to the alienation of those ities that make someone a viduals practice the hard skills for hundreds who are different. We humans have evolved good friend? What are the of different jobs. However, autism affects the desire to exclude those who are differ- qualities that make some- these individuals’ abilities to practice, gain, ent and avoid the out-of-the-ordinary. For Wone a great date? What qualities should a and exercise the soft skills essential for ad- millennia, human beings have traveled in professional look for in a new colleague? vancement in the world of work. Similarly, tight-knit groups of familiarity, relying on When I draw up a list of the qualities my autism affects these individuals’ abilities to others’ soft skills to determine with whom peers and I look for in others, here are some exercise the soft skills necessary to main- they would like to spend their time. answers: a sense of humor, self-control, tain meaningful reciprocal friendships But this reliance on soft skills is the empathy or emotional awareness, effective with non-impaired peers. Because of their very crutch that is kicked out from under listening, and being comfortable around autism, these adults may never be fully in- the legs of those with autism who are la- others. Many people rank these qualities tegrated into the fabric of their communi- beled “disabled.” As an advocate for adults above any technical abilities for the people ties because they lack the very skills oth- with autism, I argue that each of us needs we want to spend time with. ers seek out in their friends, partners, and to reexamine the qualities we seek out The list above, though, are soft skills; colleagues. And that is a trend I work to in those with whom we spend our time. these are not things people overtly try to counter, even when I am “off the clock.” Friends and loved-ones need to support learn, but are skills practiced in a variety Dr. Stephen Shore, a professor of Edu- our own growth, but our colleagues need of settings and on which people rarely cation at Adelphi University (who has As- not be people whose company we seek, receive formal feedback. We may be told Matthew Ratz, MEd, CESP perger’s syndrome) famously says, “When but whose professional skills we value and what technical skills we perform well on you’ve met one person with autism, you’ve whose talents advance our collective goals the job, but bosses and managers will rare- ual’s brain chemistry stalled his or her met one person with autism.” Autism is a in professional settings. ly tell us that our greetings each morning ability to exhibit self-control, understand a developmental disability that affects peo- Through working side-by-side with make colleagues feel special. People spend joke, or feel comfortable in crowds? These ple’s brain and nervous system develop- adults with autism, I have found that it thousands of hours and millions of dollars are the experiences of people on the au- ment along a wide spectrum and with un- sometimes helps to step outside myself to trying to improve their soft skills because tism spectrum. These are the fundamental, predictable results. The understand how vastly different people can they know that socially adept people are neurological differences that make success have not yet been discovered. Because be from one another. My regular interac- more successful, more adaptable, and more in the “neuro-typical world” so challeng- there are so many variations to its manifes- tion with hundreds of adults with autism well-liked. ing for those of us who have autism or for tations, some people argue that there may has afforded me the opportunity to reflect But what if a person’s soft skills could those who love, support, and advocate for not be a single “autism” but a wide range not easily improve? What if that individ- people with autism. of different “autisms.” see Different on page 26

Empower from page 11 objectives to ISPs for individuals to learn how to stay virtually connected to others Providing exposure and instruction for while benefiting from the speed and ease technology to our individuals with devel- of the internet in their daily lives. opmental disabilities has opened up many John Lampen is a Registered Behavior social opportunities and motivated them to Technician and Vivian Attanasio, BCBA, is reach beyond their comfort zone to con- Director of BIP, at Services for the Under- nect with old friends while maintaining Served Inc. For more information, contact relationships with new friends. All profes- Vivian Attanasio at [email protected] or sionals should consider adding technology visit www.sus.org.

Partnership from page 12 On March 31, 2016, Arc of Westches- from Apple, Google, Microsoft and other people with cognitive and learning dis- ter and Mercy College will be co-hosting technology firms, along with the facul- abilities to live more independent lives visual schedule or as sophisticated as a cal- Tech Supports for Cognition & Learn- ty of Mercy College and staff of Arc of in their communities. To find out more endar app with audible timers. The import- ing: Everyday Applications & Emerging Westchester, will provide guests with op- about this conference and other ser- ant thing is that we need to understand the Trends on the campus of Mercy College portunities to learn about the latest tech- vices at Arc of Westchester, visit www. person and their needs first.” in Dobbs Ferry, NY. Technology experts nological innovations that can empower arcwestchester.org. AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 19

Creating an Online College Degree Program for Students with ASDs

By Chelsea Donlin, MS, BCBA study within a typical university setting through online formats would still necessi- Behavior Analyst and Adjunct Professor revolves around the social interaction defi- tate the adherence to assignment deadlines, Center for Spectrum Services cits of the disorder (e.g., Glennon, 2001). the student is able to repeatedly access and and Sage College The use of computer-assisted accommoda- review learning materials such as video tions and supports are commonly suggest- lectures or PowerPoint presentations that ed in the research as mechanisms to allow may have only been available once within ince the early 1990’s, a surge in students to access academic material if and traditional college classrooms (e.g., Mey- autism spectrum disorder (ASD) when the social pressures of the typical en- en, Lian, & Tangen, 1998). diagnoses has occurred (e.g., Rob- vironment prove to be untenable (i.e., on- A fully online bachelor degree program ertson & Ne’eman, 2008; Taylor, line access to course materials; email and specifically designed for students with S2005). The reasons for this marked in- text chat options for participation; online ASDs would, by its very nature, address crease in ASD diagnoses remains contro- options for courses [Taylor, 2005]). Taking most of the specific concerns voiced in versial, but the reality of this increase has these technology based accommodations the literature regarding the strengths and resulted in greater attention to effective one step further, it may be possible to open needs of this target student population (see educational interventions, early provision up postsecondary educational options for Andreon & Durocher, 2007; Smith, 2007; of interventions, and in turn the recent in- those students for whom the cognitive and VanBergeijk et al., 2008). Difficulties in crease in individuals with ASDs pursuing social pressures of the typical college ex- handwriting for students with ASDs are postsecondary education (e.g., Robertson perience pose too great a barrier by creat- generally addressed by implementing sup- & Ne’eman, 2008; Taylor, 2005). Online ing a fully online, distance education bach- ports such as note takers, laptops, or print- education offers flexibility and accessi- elor degree program. ed lecture notes (Broun, 2009; VanBergei- bility to those students who may lack im- The use of computer-based instruction jk et al., 2008). The online college program portant skills for successful participation in for individuals with autism has been well would be fully completed through the use traditional on-site courses. Chelsea Donlin, MS, BCBA established as an effective tool in teaching of standard computer-based word-pro- Unlike the typical accommodations and a variety of skills (e.g., communication— cessing programs, alleviating any barri- supports designed for students with learn- signments, adjustment to or alternatives for Bosseler & Massaro, 2003; writing—Del- ers to learning involved in manual hand- ing disabilities that are generally common- group based assignments, course lectures ano, 2007; social skills—Bernard-Opitz, writing tasks (e.g., Broun, 2009; Myhill, place within university settings, students available in written form prior to lectures, Sriram, & Nakhoda-Sapuan, 2001). The Samant, Klein, Kaplan, Reina, & Blanck, with ASDs may require additional sup- and computer access for exam completion success of computer mediated education- 2007). The need for physical environment ports above and beyond what the school or note taking (Taylor, 2005; VanBergeijk, al formats with individuals on the autism accommodations in the classroom would is familiar with (e.g., Smith, 2007; Taylor, Klin, & Volkmar, 2008; Webb, Patterson, spectrum could be attributed to the con- also be ameliorated within the online pro- 2005). For many students with ASDs in the Syverud, & Seabrooks-Blackmore, 2008). sistency within programs that leads to gram. Since the student would be capable college setting, additional prompting may Additionally, a review of the literature re- greater predictability, as well as the abili- of working from home, the accommoda- be required to promote adherence to as- garding the supports needed for students ty of the student to learn at their own pace tions for preferential seating, lighting signment deadlines and course attendance, with ASDs suggest that a major barrier (e.g., Parsons et al., 2000; Swettenham, concrete and specific instructions on as- to pursuing and completing a program of 1996). While college level courses offered see Online Degree on page 26

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Brown Bell Consulting is a full service Government and Community Relations company. We provide organizations with customizable solutions to meet all of their local, state and federal government relations needs. To find out more about how we can help your organization, please contact us for a personal consultation. We look forward to working with you. Constance Y. Brown-Bellamy, MPA Government Relations Specialist [email protected] (202) 486-0495 PAGE 20 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2016

One Father’s Experience Developing Apps to Motivate Son with Autism to Learn

By Andre Spivey, BA about 1/3 of schools had done so as of the the children a device or tool that is more vi- Founder and CEO end of 2014. When focusing on children sual than verbal and assist them in commu- Live 2 Learn Differently, Inc with autism, the numbers of kids using nications, we discover more cooperation, technology in the classroom decreases, but patience and more input from the children. this of course depends on the type of tech- It has been discovered that many children uch has been said over the nology being used. It is most common to with autism are more visual than verbal. years concerning technology see autistic children using primarily “low- This is not out of the norm, because when and education; there has been tech” devices at school, and a mixture of children are born, during their formative and still is an ongoing debate low- and “mid-tech” at home, due to more years they learn and take information in Mabout how we can best implement tech- devices being available (Coughlan, 2014). a more visual manner. This is normal ac- nology into schools to the benefit of chil- tivity when it comes to processing sensory dren. Our adult life on a day-to-day basis is The Impact of Technology information, which is typically initiated filled with technology, from touch screens on the Autistic Brain in the DLPFC (Dorsal Lateral Pre-frontal for ordering plane tickets to self-checkout Cortex). The brain has sensors that intake at the grocery store, so it is pertinent that Devices such as tablets and apps have the information, judge the information, our children are well-versed with using had an interesting impact on children with then begin to interpret the data and make a technology. The popularity of tablets and autism. This impact overall has been pos- decision. Most of this is perceptual, as chil- smart phones has made its way into the itive for reasons that aren’t as simple and dren and adults make decisions, learn and education world in the form of educational standard as many would expect. Commu- act based on what they perceive. The brain software and apps. Even textbooks are be- nication skills has been one of the main is typically great at deciphering informa- coming digital – replacing paperbacks and challenges among children and adults with tion, separating the noisy information from hard copies. There are a plethora of apps Andre Spivey, BA autism. Children that don’t have the abili- the pertinent (Carey, n.d.). on the market for Android phones, iPhones ty to communicate wants and needs often and even Windows phones. In fact, Google ogies into the school curriculum across the lash out through tantrums, meltdowns or Why This Matters to an Autism has created and entire section of their app US and other countries. Many believe that destructive behavior. This behavior is of- Father and Software Developer store, called Google Play for Education, access to technology increases access to ten a result of the frustration from not be- that is dedicated to advancing technology information. However, many also believe ing able to have your needs or wants met, The autistic brain is different than that of in education. As the parent of an autistic that these devices will act as a distraction due to inability to communicate with oth- a individual in unique ways. son, I’ve spent lots of time finding ways to from a traditional education. The debate ers. This is often more enhanced among When using mobile apps and games, chil- make educating my son easier on a daily differs as countries in the developing world non-verbal children with autism. Often dren with are able to visually see the ac- basis; I’ve used everything from pictures adapt and adopt these technologies, while times, improvements in communication tions, communications and messages and to PECs, flashcards, boards and more. Cur- many undeveloped countries fall behind. It result in parents reporting a decrease in the also create their own messages to send to rently there are many studies and a major is currently estimated that in the UK 70% severity of tantrums and meltdowns and a others. We are using technology more and debate surrounding the issue of implement- of schools have implemented tablets into reduction in the frequency of this type of ing tablets, smart phones and other technol- their education. Meanwhile in the US, only behavior (Heasley, 2013). When we give see Motivate on page 27

Examining the Impact of H.R. 3054: The Global Autism Assistance Act of 2013

By Albert Yi, BA has autism with an difficult on the families as many have to MSW/MPH Graduate Student 2016 would cost, on average, $2.3 million dollars adjust their work schedules to accommo- University of Southern California in the United States for lifetime care, where- date services financially (Autism Speaks, as a child with autism without an intellectual 2012). An article in CNN money explained disability would cost, on average, $1.4 mil- the harsh realities of life with autism when he Global Autism Assistance Act lion dollars in the United States for lifetime health insurance companies do not provide of 2013, known as H.R. 3054, care (Diament, 2012). The rising concern accurate information on what services are is designed to provide training of the autism spectrum has a greater impact covered and the fees associated with treat- and education to teachers in de- on families financially and emotionally be- ing the autism disorder (Dickler, 2012). Tveloping countries with intervention and cause of the expenses to receive services for Families tend to take out loans, find a sec- prevention treatment plans for children di- their children of the autism disorder (Au- ond job, or ask for donations because of the agnosed with an autism spectrum disorder tism Speaks, 2012). Past President Mark costs of treatments that are not covered by (GovTrack, 2014). It was introduced by Roithmayr of Autism Speaks emphasized their health insurance, even after President Republican Representative Chris Smith of the need for the health insurance companies Obama had signed into law the Affordable New Jersey and co-sponsored by Demo- to cover services for the autism spectrum, Care Act of 2011 (Dickler, 2012). Although cratic Representative Mike Doyle of Penn- because many families are denied coverage treatment plans can be expensive, most sylvania on August 2, 2013, because of an which can force families to pay out of pock- of the costs tend to go into adult care for increasing prevalence rate of the autism et expenses regardless of their economic mental illnesses. Autism Speaks and the disorder throughout the world (GovTrack, status (Autism Speaks, 2012). Research has Autism Society of America elaborate how 2014). Autism is an important issue based shown that the autism spectrum treatment is many children end up in adult day care cen- on the Center for Disease Control and Pre- Albert Yi, BA expensive for both direct medical care and ters because they were not able to receive vention research data from the year 2000 non-medical care, and the non-medical care treatment plans at an early age or that their when the prevalence rate of autism had the autism disorder is rising in developed accounts for a larger proportion of the costs families were unable to afford coverage of been 1 in 200 in U.S. children. Since then, countries, such as the United States, there to care for individuals with the autism disor- the autism disorder (Autism Speaks, 2012). the prevalence rate has climbed to 1 in 68 seems to be a lower prevalence rate in de- der (Autism Speaks, 2012). Todd Datz (2006) stresses the need to in U.S. children who are diagnosed with the veloping countries, such as China, Nigeria, Nongovernmental organizations, such as allocate resources towards intervention autism spectrum disorder (Center for Dis- and other developing countries. Autism Speaks and The Autism Society of and prevention options. Michael Ganz, ease Control and Prevention [CDC], 2014). Treating autism spectrum disorder is cost- America (ASA), believe that early inter- who is the assistant professor at the Har- This is important because the causes of the ly, which can create a financial burden to vention and prevention planning can help vard School of Public Health, believed that autism spectrum are unknown, and there the families of the autism disorder and the offset costs in the long term (ASA, 2014). the current data of how much autism care is currently no cure for the developmental United States as a nation, with average costs Research shows that early diagnosis of au- would cost can vary between direct medi- disorder (Autism Speaks, 2012). The au- in the U.S. to be estimated at $137 billion tism reduces lifetime costs by two-thirds cal and non-medical care (as cited in Datz, tism disorder affects all people regardless for services to treat the developmental dis- with access to effective treatment plans for 2006). Ganz believes that the reason for of race, ethnicity, and social economic sta- ability (Diament, 2012). Researchers at the the autism spectrum disorder (ASA, 2014). high costs is because of a wide range of tus as represented in the CDC data (CDC, University of Pennsylvania and the London When access to treatment plans are limit- 2014). Although the prevalence rate of School of Economics found that a child who ed or minimized, it can be overwhelmingly see Autism Act on page 24 AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 21

Interaction from page 1 and acceptance of autism into inclusive spy game where children with ASD learn classrooms. However, for high-function- about relationships and emotions. SAS For example, Kyle, a 10-year-old boy ing adolescents, such contrived situa- offers small group sessions for children with ASD, got into trouble at school on a tions may not be appropriate due to the to discuss the social skills learned in the daily basis for inappropriately screaming unavoidable imbalance of power and the game and also sessions for parents to sup- or hitting others when he was frustrated. lack of motivation to engage in reciprocal port their child’s burgeoning social skills One goal for his parents and teachers was conversations. An adolescent with ASD development. to teach Kyle effective ways to appropri- once told me that he feels uncomfortable, I hope to see more such interventions ately express himself when frustrated. At and even ridiculous, participating in these that capitalize on children’s shared interest school, his resource teacher implemented relationships set up by his well-meaning in technology to increase social skills. At the following behavior program: when teachers. He explained, “These kids don’t the same time, more research to scientifi- faced with a situation that Kyle could not even like me. They’re just being nice to cally validate the effectiveness of such pro- handle in the classroom, he was taught me because they think I’m ‘special needs.’ grams is needed. to calmly state, “I’m frustrated because They treat me like a baby.” On the other As I type this, I glance at the Christmas ____. Can you help me?” rather than be- hand, when he participates in our sum- presents wrapped under the tree. One of coming loud, destructive, or violent. Due mer camps, his proclivity and aptitude for the gifts is for Andy, my 8th grader with to Kyle’s limited expressive language computers seems to level the playing field. ASD. He wants to be a computer pro- skills, he relied on an iPad app to serve as He feels he is just one of them, a rare expe- grammer or video game developer when his augmentative communication device. rience indeed for a child who always feels he grows up. For Christmas, I bought him He would tap his finger on pictures that he is different. a Raspberry Pi starter kit and a program- would produce preset vocalizations. Ac- Our preliminary research results show ming book for children called Adventures cording to his behavioral program, if he Juhi Kaboski, PhD that adolescents with ASD who participate in Minecraft. I am giving him something was successful in expressing his frustra- in these summer camps exhibit significant that I know he will enjoy. But more impor- tion without the use of undesirable behav- interest in technology are invited to partic- increase in social skills and vocational tantly, I am giving him an opportunity to iors, he was rewarded with three minutes ipate. We try to keep the composition of skills, and decrease in social anxiety (Ka- naturally venture into conversations about to play his favorite iPad game. the group to roughly 50% ASD and 50% boski et al., 2014). In addition to scientific these things with his cousins and neigh- typically developing children. The partici- evidence of effectiveness, anecdotal suc- borhood children who will find his new Finding a New Way to Take pants are first taught basic technical skills cess stories shared by participants and their toy “cool” and will want to talk about their Advantage of Technology for the necessary to program a robot or develop a parents offer much encouragement. One common interest in technology. Instead of Benefit of the Individual with ASD computer game. Then they are given col- mother sent an email message about her fretting that he is playing too many video laborative group projects in which they son’s involvement in the Computer Game games by himself, I will be able to sit back In addition to it being used as an alter- have to share robots and computers, nego- Design Camp: “My heart is absolute- and watch him develop his own video native/augmentative communication de- tiate group project ideas, resolve any con- ly soaring for Nate*! He has come home games – with other children. vice or as a reward for a desired behav- flicts, make small talk during breaks, and both days so excited. Although the details ior, technology is emerging as a means to present their final projects together on the are few, which is normal for him, his first Juhi Kaboski, PhD, is a Research As- enhance natural social interaction among last day of camp to an audience of family words to me (both days) have been: ‘I’m sistant Professor of Psychology and Di- children with ASD and their peers. Re- and friends. so excited. I love it. Finally, something that rector of the F.U.N. Lab (Laboratory For search repeatedly has demonstrated that All these skills are taught directly and I understand and don’t feel stupid doing. Understanding Neurodevelopment) at the a cognitive understanding of social skills indirectly while children are having fun And, I am meeting new friends.’” (*Pseud- University of Notre Dame. If you have any is useless without opportunities to prac- together in a supportive and nonjudgmen- onym used to protect privacy.) questions, please feel free to contact Dr. tice them outside of the clinical setting tal environment. We find that regardless Kaboski at [email protected] or 574-631- and in more naturalistic settings with age of their pre-existing technical or com- Increasing Interest in Utilizing 2814. To learn more about her research, peers. Given that social demands become munication skills, children of all abilities Technology in Social Skills Intervention please visit www.funlab.nd.edu. increasingly complex with age, and ado- are motivated by their shared interest in lescents with ASD are vulnerable to de- technology to engage in reciprocal social There are a number of other nota- References veloping social anxiety as they become conversations. Because they are doing ble recent efforts to use technology for painfully aware of their own social lim- something they enjoy and at which they the purpose of increasing social skills. Beaumont, R., & Sofronoff, K. (2008). A itations, it is imperative that we develop feel proficient, their motivation to learn For example, Dr. Christina Noel at the multi-component social skills intervention targeted interventions to improve social is high, pressure to engage in contrived School of Teacher Education, developed for children with Asperger Syndrome: The and vocational development in adoles- social interactions is low, and their confi- the Minecraft Club for individuals with Junior Detective Training Program. The cents with ASD. dence grows. ASD and neurotypical peers who share Journal of Child Psychology and Psychi- Since many children with ASD already This approach is different from other the common specialized interest in the atry, 49, 743-753. are attracted to technology, it can be used more traditional peer-mediated interven- video game, Minecraft. The club allows as a motivator to draw children into nat- tions where typically developing children adolescents to work on the virtual Mine- Kaboski, J., Diehl, J.J., Beriont, J., Crow- ural social interactions. One such effort is are given special training to work with craft “worlds” they jointly created while ell, C., Villano, M., Wier, K., & Tang, K. ongoing at the University of Notre Dame’s children with ASD. Of course peer-medi- simultaneously learning and practicing (2015). Brief Report: A Pilot Summer Ro- F.U.N. Lab (Laboratory For Understand- ated interventions can be highly effective how to interact and work with others. An- botics Camp to Reduce Social Anxiety and ing Neurodevelopment). My colleagues at including children with autism who other example is the Secret Agent Society Improve Social/Vocational Skills in Ado- and I at the F.U.N. Lab have developed an would otherwise not be able to engage (SAS) developed by Dr. Renae Beau- lescents with ASD, Journal of Autism and evidence-based summer camp for adoles- with their peers. They also have the ben- mont at the University of Queensland Developmental Disorders, 45(12), 3862- cents with ASD. Children who express an efit of bringing much needed awareness (Beumont, 2008). SAS is an interactive 3869. doi: 10.1007/s10803-014-2153-3.

Attorneys & Advocates in New York & New Jersey working with families in the areas of: Special Education Law, School Discipline, Anti-Bullying, Civil Rights, Transition Planning, Special Needs Planning, Estate Planning, Estate Administration & Guardianship

www.bargergaines.com New York: 914.902.5918 New Jersey: 908.242.2635 [email protected] PAGE 22 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2016

Reflections from page 10 In 1980, most individuals with ASD were begin effective treatment as toddlers. This L. (2007). Applied Behavior Analysis. 2nd taught using discrete trial instruction (DTI; has dramatically altered the course of the edition. Upper Saddle River, New Jersey: Over the last 20 years, there has been a e.g., Lovaas, 1981). This sequenced form disorder for many individuals with ASD. Prentice Hall. radical change in our ability to detect au- of instruction enabled individuals with au- Furthermore, individuals receive more tism in young children. Diagnostic proce- tism to learn concrete skills in an effective diverse and effective instruction, as the Fenske, E. C., Krantz, P. J., & McClannah- dures have evolved to include direct obser- way. DTI remains an essential component number of evidence-based procedures has an, L. E. (2001). Incidental teaching: A not- vational methods of assessment, enabling of educational interventions for autism, grown. Challenging behaviors are now rou- so-discrete-trial teaching procedure. In C. diagnosis to be considerably more objec- and is still heavily relied on to efficiently tinely addressed through function-based Maurice, G. Green, & R. M. Foxx (Eds.), tive. The ADOS (Lord, Lisi, Lambrecht teach many skills. However, the field has assessments and interventions tailored to Making a difference: Behavioral interven- et al., 2000) is the gold standard measure, also developed many additional procedures those functions. Functional assessment has tion for autism. Austin, Texas: Pro-Ed. and it brilliantly includes the assessment of to target initiation skills, including inciden- become individualized in the same ways pivotal deficits that are notable at young tal teaching, pivotal response training, and that treatment has been tailored to individ- Hart, B. M., & Risley, T. R. (1982). How ages, including joint attention. Further- natural environment training (e.g., Fenske, ual service recipients. This has led to the to use incidental teaching for elaborating more, outreach to the pediatrician commu- Krantz, & McClannahan, 1991; Hart & Ris- development of more effective behavior language. Austin, TX: Pro-Ed. nity has resulted in routine screenings of ley, 1982; Koegel & Koegel, 2012; Koegel, intervention plans and a far reduced need autism red flags at most well-baby visits. O’Dell, & Koegel, 1987; Sundberg & Par- for interventions relying on aversive pro- Iwata, B., Dorsey, M. F., Slifer, K. J., Bau- Many doctors now administer tools such tington, 1998, 1999). All of these methods cedures. Finally, data collection strategies man, K. E, & Richman, G. S. (1982). Toward as the M-CHAT (Robins, 2008) at the 18 teach in more informal and more natural- have been tremendously expanded with the a functional analysis of self-injury. Journal month visit, screening for early signs of istic contexts. The addition of naturalistic development of new devices and new apps. of Applied Behavior Analysis, 2, 3-20. autism, including the absence of pointing, teaching procedures has expanded the focus As we look to the future, it is with great joint attention, responsiveness to name, of intervention and the identified goals for anticipation and optimism. Autism is rou- Koegel, R. L. O’Dell, M. C., & Koegel, and babbling. Parents also have instanta- individual learners, and has resulted in im- tinely detected at young ages. Increasing- L. K. (1987). A natural language teaching neous access to information on the web proved generalization of skills. In addition, ly, effective treatment is available to in- paradigm for nonverbal autistic children. about warning signs, leading more parents there has been an increased value placed on dividuals diagnosed with ASD. Nuanced Journal of Autism and Developmental Dis- to identify those signs in their children. the development of functional skills (e.g., applications of the science of ABA have orders, 17, 187-200. In addition, the Center for Disease Con- Cooper, Heron, & Heward, 200). Behavior led to assessment and intervention pro- trol has altered the prevalence rates, and it analysts focus on the development of skills cedures that are more individualized and Koegel, R. L. & Koegel, L. K. (2012). The is now clear that this is not a low incidence that will increase the individual’s access more effective. The science continues to Pivotal Response Treatment Pocket Guide. disorder. As a result of all of these chang- to reinforcers, community integration, and evolve more precise methods and more Baltimore: Brookes Publishing Company. es, and with the increase in information quality of life. In 1980, training was fairly precise data collection strategies to track available on the web, awareness of autism simple and straight forward, as competent progress and outcomes. The credentialing Lord C., Risi S., Lambrecht L., et al. is exceptionally high. The media routinely staff had only a few skills to master in or- of behavior analysts continues to become (2000). The Autism Diagnostic Observa- covers autism stories, and autism interven- der to effectively teach. Today, the train- more rigorous, and the BCBA credential tion Schedule–Generic: a standard mea- tions are frequently cropping up and being ing of staff is a complex endeavor, and it is being recognized not only as useful, but sure of social and communication deficits touted as effective. This can be a challenge is a moving target. As the field improves also as essential. The field as a whole con- associated with the spectrum of autism. for parents seeking information on effec- and identifies new effective techniques, tinues to add to the literature in crucially Journal of Autism and Developmental Dis- tive treatment, but it is much easier to ac- staff must be trained in these state-of-the important areas including the assessment orders, 30, 205–223. cess information about autism in 2015 than art interventions. of generalization, social validity, and qual- it was in 1980. One excellent development over the ity of life. It is impossible to know just Lovaas, O. I. (1987). Behavioral treatment For diagnosed children who are receiv- last 20 years has been the credentialing what will define the field 35 years from and normal educational and intellectu- ing services, the greatest changes may have of behavior analysts. The Behavior Ana- now, but the momentum is high and the al functioning in young autistic children. occurred in the realm of the assessment lyst Certification Board (bacb.com) cer- future is very bright. Journal of Consulting and Clinical Psy- and treatment of challenging behaviors. In tifies individuals at the paraprofessional chology, 55, 3-9. 1980, there was still a focus on behavior level (Registered Behavior Technician Rita Gardner, MPH, LABA, BCBA, is modification in the absence of behavioral or RBT), the assistant level (Board Cer- CEO-Elect, Mary Jane Weiss, PhD, BC- Lovaas, O. I. (1981). Teaching develop- assessment. The technology of functional tified Assistant Behavior Analyst or BCa- BA-D, is Executive Director of Research, mentally disabled children: The ME book. analysis, first outlined in the seminal arti- BA, and behavior analyst level, includ- and Frank L. Bird, MEd, BCBA, is Chief Baltimore: University Park Press. cle published in 1982, was revolutionary ing BCBA (master’s level) and BCBA-D Clinical Officer at Melmark. The mission (Iwata, Dorsey, et al., 1982). Challenging (doctoral level). There have been steady of Melmark is to serve children, adults and Robins, D. L. (2008). Screening for autism behaviors are now evaluated in terms of increases in the rigorous standards set for their families affected by a broad range spectrum disorders in primary care set- the functions they serve for the learners. certification, and the credentials have be- of intellectual disabilities. With service tings. Autism: The International Journal of Is this individual garnering attention, ef- come fully recognized as the designation divisions in Berwyn, Pennsylvania and Science and Practice, 12 (5), 537-556. fectively escaping from tasks, successfully associated with competence. Andover, Massachusetts, we provide ev- obtaining desired items? In other words, Data collection has also been revolu- idence-based educational, vocational, Sundberg, M. L. & Partington, J. W. how is this (aberrant) behavior working for tionized with new technological options. clinical, residential, healthcare and reha- (1998). Teaching language to children with the individual; what maintains it in their Hand held data devices and a multitude of bilitative services, personally designed for autism or other developmental disabilities. behavioral repertoire? The assessment apps allow for instantaneous data collec- each individual in a safe environment of Pleasant Hill, CA: Behavior Analysts, Inc. of function enables treatment to focus on tion during instruction. The IPAD has been warmth, care and respect. For more infor- preventing the occurrence of the behavior used in novel ways to present instructional mation, please visit www.melmark.org and Sundberg, M. L. & Partington, J. W. (1999). through a variety of antecedent strategies material, track progress, and fill the com- www.melmarkne.org. The need for both DT and NE training for and replacing the aberrant behavior with municative needs of individuals with ASD. children with autism. In P. M. Ghezzi, W. appropriate replacement behaviors. The evolution has been astonishing. References L. Williams, & J. E. Carr (Eds.), Autism: There has also been a tremendous change With the advent of new diagnostic methods Behavior Analytic Approaches. Reno, NV: in the array of skill acquisition approaches. and early detection, individuals are able to Cooper, J. O., Heron, T. E., & Heward, W. Context Press.

Advancing Care from page 8 The advantages of employing the new- specialized populations—like those with points, and collaborate with interdisci- est developments in population health developmental disabilities—presents a plinary care teams, caregivers are able to managers to visualize, trend, tabulate, re- management for the developmentally dis- built-in incentive to identify new ways of optimize treatments at the point of care. port and quantify results from selected abled are significant and, in many cases, providing higher quality, cost-effective Already the use of such technologies has interventions and regimens. In turn, this the use of such technologies would not care. been shown to reduce the costs of care provides direct, quantifiable linkages be- be possible without the financial back- It appears likely that the next wave of for certain individuals by 50 percent or tween therapy adjustments and individual ing of state health agencies. For exam- progress in caring for complex popula- more. Although PHM solutions have pri- outcomes. The attendant ability to visual- ple, the vitally important efforts of SUS tions will come from innovative health- marily focused on acute and chronic pa- ize patterns and trends in real time stands are supported by New York State’s Office care organizations working with govern- tients, the work done by SUS shows that in stark contrast to traditional practices for People with Developmental Disabil- ment agencies and leveraging pioneering the potential impact for highly complex, comprised of recording paper observa- ities (OPWDD), an agency responsible technologies—like those provided by specialized populations may prove even tions, collecting forms, translating diverse for coordinating services to more than Virtual Health—to better manage, un- greater. documentation into spreadsheet form by 126,000 individuals with intellectual and derstand, coordinate and ultimately care hand, hunting for trends or patterns, and developmental disabilities. For states like for patients. By using this technology to For more information, please visit www. ultimately trying to extract useful conclu- New York that offer monetary support, the create a comprehensive approach, record VirtualHealth.com or email adam@virtu- sions from inconsistent datasets. significant expense of providing care for a consistent and accessible set of data alhealth.com. AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 23

Novel Research from page 1 happened today’, versus static questions It is likely that wearable technologies that target a general trend about behavior. will become more commonplace for indi- the spectrum and their caregivers. Mobile devices may be able to provide a viduals with ASD and that, increasingly, There are countless applications for more complete picture of how behavior families and schools will want the data these devices for the health sector, and changes across time and also how it may from these devices to be processed in a there is a growing response from the sci- vary in different contexts. Lastly, caregiv- way that provides them with real-time entific and medical communities about ers may be more motivated to complete feedback that they can use to change how what data to collect and how it should be data collection on a mobile device because they engage with the child or adult with processed and interpreted. The introduction of its constant availability. The ability to of- ASD. While there are many privacy con- of ResearchKit, Apple’s new Health appli- fer an adaptable time window is especially cerns that are beyond the scope of this ar- cation in 2015, made it clear that research important and appealing to those who are ticle, the more data that is generated about with mobile devices is going mainstream. A taking care of children with ASD. Lastly, the child or adult with ASD, when used recent collaboration between researchers at in cases where individuals with ASD pro- in conjunction with clinical observations Duke University and the developers at Re- vide self-report, they may be more moti- and recommendations, the more we can searchKit, called “Autism and Beyond”, is vated to do so on a mobile device versus optimize treatment for those with ASD. designed to study facial emotion abnormali- the traditional paper and pencil methods. Ultimately, portable devices may help us ties associated with ASD using the outward Quick automated analysis algorithms are to understand the everyday fabric of living facing camera of a smartphone. The collab- tackling the high volumes of data that are with ASD. oration suggests that there is going to be an generated by portable technologies. For increasing crosstalk between both academic example, recent work that has designed au- For more information, please visit researchers and commercial entities. tomated tools to measure eye contact from www.nyp.org/autism. One significant area for portable devices Rebecca M. Jones, PhD, MPhil video cameras embedded into commercial- in ASD research is a wearable wrist sensor ly available eye-glasses (Pivothead glass- References that can typically track arousal through a individuals who have difficulty expressing es) (Ye et al., 2012). In order to generate sweat response (electrodermal activity – how they are feeling. information on the frequency and duration Fletcher, R. R., Amemori, K., Goodwin, EDA) as well as movement (acceleration). Another significant area of expansion is of eye contact from videos, a researcher M., & Graybiel, A. M. (2012). Wearable Newer models also include the ability to developing novel applications for smart- typically needs to manually code the video wireless sensor platform for studying au- track heart rate and temperature. While phones that better track an individual’s dai- frame by frame. This process is time con- tonomic activity and social behavior in classic studies of arousal and sweat re- ly behavior, particularly tailored for those suming and prone to human error. The au- non-human primates. Conf Proc IEEE Eng sponse have been in a laboratory setting, who are on the spectrum or a caregiver of tomated algorithms are more efficient and Med Biol Soc, 2012, 4046-4049. what is appealing about these wrist sensors someone on the spectrum. Traditionally, are equipped to handle the large amounts is that they are mobile and can be worn information about behavior such as lan- of data that are generated by the video cam- Kumar, S., Nilsen, W. J., Abernethy, A., during daily activities. Some children and guage, social skills, restricted interests or era. These algorithms developed for wear- Atienza, A., Patrick, K., Pavel, M., ... Sw- adults with ASD have tantrums or disrup- tantrums are collected via paper and pen- able eye glasses is just one example of the endeman, D. (2013). Mobile health tech- tive behavior and it is the hope that these cil. When there is an interest from either many different computer algorithms that nology evaluation: the mHealth evidence sensors will be able to identify these events a clinician, school and/or research study are being developed to process data gener- workshop. Am J Prev Med, 45(2), 228-236. in their early stages or before they begin. In to measure changes in behavior over time, ated from wearable devices including wrist other words, if these devices can detect pre- these paper and pencil questionnaires are sensors, devices that record spoken lan- Mazurek, M. O., & Wenstrup, C. (2013). Tele- cipitous changes in arousal that foreshad- administered repeatedly. Collecting data in guage and information from smartphones. vision, video game and social media use among ow a tantrum, perhaps caregivers or clini- this fashion is tedious and redundant both This is an exciting area where research and children with ASD and typically developing sib- cians could be alerted in advance to these for those completing the forms as well as the technology industry intersect and it is lings. J Autism Dev Disord, 43(6), 1258-1271. events through mobile technology con- those who are interpreting the data. They clearly mutually beneficial. nected to the wrist sensor in order to mini- are also potentially more prone to human The types of devices as well as the capac- Shane, H. C., & Albert, P. D. (2008). Elec- mize the behavior. This area of research is error. Methods that rely on electronic en- ity of existing devices to collect real-time tronic screen media for persons with autism interesting but in nascent stages. What is tering and storage of data facilitate all as- information is growing and I expect that spectrum disorders: results of a survey. J most exciting is being able to understand pects of the data process and have the po- we will continue to see innovative tools Autism Dev Disord, 38(8), 1499-1508. how to use the various readouts from these tential to be less time intensive. that are adapted specifically to the needs of wrist sensors as a way to better understand Smartphones also offer flexibility and individuals with ASD. For example, there Shic, F., & Goodwin, M. (2015). Introduction to the internal state of an individual with ASD immediacy in data collection since care- are wearable vests that measure electro- Technologies in the Daily Lives of Individuals with who may not be able to communicate as givers can answer various questions about dermal activity (EDA), acceleration elec- Autism. J Autism Dev Disord, 45(12), 3773-3776. well about how they are feeling (either in their child, student or patient in real-time. trocardiography (ECG) and temperature a positive or negative manner). If we can This means not only ease but also speed in (Fletcher, Amemori, Goodwin, & Gray- Ye, Z., Li, Y., Fathi, A., Han, Y., Rozga, A., continue to study how physiological mea- general data collection and the ability to biel, 2012) and these might become tools Abowd, G. D., & Rehg, J. (2012). Detect- surements correspond to different moods, provide real-time reports about a child’s that are particularly helpful when an indi- ing eye contact using wearable eye-tracking emotions, attitudes and health conditions, behavior. Research questions can focus vidual with ASD has sensory sensitivities glasses. Proceedings of the 2012 ACM Con- we will be better equipped to understand on ‘what is happening right now’ or ‘what and will not tolerate a wrist sensor. ference on Ubiquitous Computing, 699-704.

Video from page 14 consistency among all family members. over the phone. Additionally, parents may those with Autism Spectrum Disorder. Alternatively, those seeking video con- require on-going assistance in securing Elena Zaklis MA, BCBA and Glenn Slo- to have the individual demonstrate the skill sultation services need not be caregivers. services from a state’s Division of Devel- man, PhD, BCBA-D, NCSP are from Be- independently in the home, school and com- Group homes and school districts may find opmental Disabilities. A knowledgeable havior Therapy Associates in Somerset, munity setting. Scheduling these observa- that travel may make accessing BCBA ser- professional may help navigate the state’s New Jersey and can be reached at ezaklis@ tions for the entire team (child study team vices cost prohibitive. BCBAs may find system to obtain entitled services. Another behaviortherapyassociates.com or gslo- members, parents and other professionals) to themselves providing initial on-site con- aspect where video consultation may prove [email protected] and attend the clinic and problem solve may be sultations with follow-up consultations useful is assisting individuals with more se- at www.BehaviorTherapyAssociates.com. possible with the use of video consultation. given remotely. There are clear advantag- vere disabilities with the transition to adult With video consultation, parents and es with video consultation over that of a services/group home settings. Sheltered References caregivers can be supported while pro- telephone-consultation model behavior, workshops may not have access to profes- viding interventions for the components antecedents and consequences can be ob- sionals trained in behavior analysis. Travel Fisher, W. W., Luczynski, K. C., Hood, S. A., that have been determined to maintain the served directly rather than described, mak- time and access to the new location may be- Lesser, A. D., Machado, M. A., & Piazza, problem behavior. They may be taught to ing the consultation more effective and come cost prohibitive and cause difficulties C. C. (2014). Preliminary findings of a random- provide both intervention and prevention efficient. With the portability of electronic when ensuring services. By using a com- ized clinical trial of a virtual training program for strategies in the comfort of their homes. devices, behavior can be seen where it hap- mon professional, continuity of services is applied behavior analysis technicians. Research In some cases, families may struggle to pens, in the community or at school as long ensured and is beneficial to the individual. in Autism Spectrum Disorders, 8(9), 1044– have all caregivers attend trainings at the as the minimum bandwidth is secured. Overall, professional services may be able 1054. http://doi.org/10.1016/j.rasd.2014.05.002 same place (e.g., traveling to the appoint- Other types of video consultation ser- to be provided via video consultation. Psy- ment from a work destination); with video vices may be useful. In the area of case chiatrists, psychologists, and BCBAs may Wacker, D. P., Lee, J. F., Dalmau, Y. C. P., consultation parents can attend from two management, parents may desire a second work with families and educators that are Kopelman, T. G., Lindgren, S. D., Kuhle, different remote locations and participate opinion from an outside professional. For encumbered with distance to make the trip J., … Waldron, D. B. (2013). Conducting at the same time. An additional benefit is example, parents may seek advice about to multiple offices impractical. The saying Functional Analyses of Problem Behavior that extended family members (e.g., grand- their child’s educational program and pre- “it takes a village” is truly the norm when Via Telehealth. J. Appl. Behav. Anal. Jour- parents, older siblings) can participate in fer to have a 1:1 consultation with a profes- we examine the community efforts neces- nal of Applied Behavior Analysis, 46(1), the training, which is helpful to ensuring sional that they can see rather than a voice sary to provide quality care and services for 31–46. http://doi.org/10.1002/jaba.29 PAGE 24 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2016

College Success from page 9 College police, and fire). He has an old-fashioned Assistive technology needs to be provid- calendar that I fill in with all of the import- ed earlier, with more consistency from (www.kurzweiledu.com). Soon, he was PK is now at Marshall. He tried anoth- ant dates for his term. We write out his rent teachers who are highly skilled at training performing at grade level. er learning disability specific program in checks and he uses the ATM to report his students to take the greatest advantage of It’s also important that I mention the use Florida, but they were overwhelmed with balance, to know when to sign them and these benefits. I am deeply saddened to of video games. PK used simple games managing entire classes of students with drop them by the rental office. This is all think about all of the very capable students like Lego Star Wars to learn persistence, disabilities, and did not find in their hearts “assistive technology” that even non-dis- who are held back or completely denied patience, determination and to pace him- to invest in PK’s success. But Marshall’s abled persons use! the ability to show their intelligence be- self between pleasure-seeking activities program was quite individualized, invest- Very low-tech support happens with cause of the lack of assistive technology. and prioritizing academics. Also, the ed, committed, and flexible about working kitchen equipment, the shower and the And deeply grateful that some angels did Wilson tutor, Miss Tiffany, used learning collaboratively with us to provide his as- water emergency shut off valve—red nail see his intellect and his dedication to learn- games during break times in his remedi- sistive technology needs and the other sup- polish marks the settings so he is protected ing, and were willing to put forth the effort ation so every moment of the remediation ports to help him achieve. from burning himself or being unable to to see him succeed. protocol included the opportunity to read Vocational Rehabilitation has provided respond in a crisis. He uses his cell phone and learn. PK with two different computers over his to check the weather to know what to wear, Patrick Kelty is a senior at Marshall Uni- post-secondary career, his Irlen lenses and to text clarifying questions for independent versity working toward a Regent’s Bach- High School the cost of a private tutor. He’s received two living (how do I put a Band-Aid on my elor’s degree in history and is expected to Kurzweil systems (one and then an update). toe?), and in September, to address a lock graduate in May of 2017. He has shared After a difficult battle, he was provid- They also provide his tuition costs and fees out (only his second in three years!). his written work about his experience at ed strong supports in high school. He for the Marshall College Autism Program. The greatest accomplishment for me is Marshall University at the Autism Society received Wilson Reading program that At Marshall, because of the College that now, because of the consistency of of America National Conference in 2014 allowed him to learn the decoding and Program, his Kurzweil has been provided the access to Kurzweil, PK is reading in- and 2015, and has written about his love of phonetic foundation that he had been de- with 100% consistency, resulting in con- dependently. They are high interest, low Marshall in the book, “College for Students nied during early elementary, due to his stant and stable access to the written cur- reader books (chapter books) but he reads with Disabilities: WE DO BELONG,” ed- autism, sensory assault and simply put, riculum, with complete independence. His from the time he wakes until he retires and ited by Dr. Stephen Shore and Dr. Pavan the darkness surrounding the early days tests are provided partially with Kurzweil this was on my “mommy wish list” for as John Antony of Adelphi University. of understanding autism in the early 90’s. reading and sometimes, depending on con- long as I could remember. I live to read, Dena Gassner is a wife, mother, grand- He used Wilson intervention for two years tent, with read aloud. To facilitate needed and I so wanted him to have that love of mother, social worker, PhD student, and and finally learned to decode the symbols movement, he dictates his test answers reading. And now he does! autistic attending Adelphi University. She he loved so well. utilizing separate testing accommodations. As you can see, the use of assistive tech- utilizes lighting accommodations, a Smart The high school used Kurzweil more of- He uses a color-coded visual schedule that nology has been ongoing and of greater Pen, Irlen Lenses and extended time in ten, but still, the temptation to read aloud to is provided every Monday. While many in- and greater value over his life. Going for- her PhD studies. She has been published him was so must easier, the teachers found terventions have come and gone, the Irlen ward, I believe technology will allow him in many autism publications including a the Kurzweil to be a bit annoying. So while Lenses are his one constant. They allow to be employed and to work in the com- shared post in the same book as her son, he was getting the work read aloud, he was access to all learning environments, ease munity. His mastery of technology and “College for Students with Disabilities: still person dependent for most things. One of learning and sensory regulation. I also the ability to read maps and bus schedules WE DO BELONG,” sharing a very differ- regret I do have is that we never wrote believe they have diminished the need for will lead to more independence and com- ent story of college. goals to learn to read cursive. His signature prescribed medications. Of course, each munity navigation. Every moment of his She is a national board member for is still printed and this is not a problem, but person’s benefit is unique and not every- life benefits from the use of both use of GRASP and the Arc US and an advisory not being able to read cursive continues to one will enjoy such an outcome, but this both simply and complex assistive tech- board member for the Autism Society. In be a bit of a barrier. has been our experience. nologies help with school and home. He 2014, she spoke on issues related to autis- But the use of a note taker, 1 hour a day has achieved the level of independence girls/women at the UN in Geneva and of 1-2-1 support, dictation to scribe for Independent Living we had most envisioned in our dreams for recently consulted to the autism research- written work and the strong commitment him, not by outgrowing technology, but by ers at Cambridge University for Dr. Simon of his teachers and PK’s own work ethic Assistive technology has helped PK live maximizing technology. Baron-Cohen’s team. She seeks to live a resulted in an excellent outcome. He was more independently, too. After two years in That is the most important message I can fully authentic life not by overcoming au- so academically successful, he got to man- the dorm, he now lives in his own off-cam- convey. Maximizing assistive technology tism but by wholly embracing and maximiz- age the ice hockey team and enjoy many pus apartment. He has important details options reduces physical and cognitive ing her abilities including her autism. For of the same extracurricular joys as other posted on a whiteboard (emergency/fami- fatigue, so a paradigm shift needs to hap- more information, visit www.denagassner. students. ly contacts, the code for the laundry room, pen for students requiring these supports. com or email [email protected].

Autism Act from page 20 orders, health services provide early de- at the global level (Datz, 2006). training and education for professionals tection and intervention plans, and many The current status of the Global Autism who specialize in autism spectrum disor- services; however, with further research to families are becoming increasingly aware Assistance Act of 2013 (H.R. 3054) in- ders in the developing countries, families utilize what treatment plans are the most of the pervasive disorder (Maguire, 2013). cludes the prevalence rates are for children will be able to receive intervention and pre- effective forms of treating the disorder, it Developing countries do not have health- of autism, how autism is defined by Con- vention plans for their children. could create less of a financial challenge care professionals, who are trained and gress, and the effectiveness of early detec- for the family (Datz, 2006). There is cur- experienced in the field of the autism dis- tion, intervention, and prevention treatment Albert Yi, BA, has worked in the field of rently no known cure for autism, and it order. Many of them do not have the nec- plans (CongressGov, 2014). The legislation autism for six years and is currently a grad- tends to be more common in boys than in essary medical capabilities to diagnose a allows large nongovernmental organiza- uate student at the University of Southern girls (Datz, 2006). child with autism, which could be a factor tions, such as Autism Speaks and the ASA California. For more information, please There is a concern about the differenc- as to why the prevalence rates are low in to lead autism cause and provide funding to email [email protected]. es in prevalence rates between developing the developing countries (Maguire, 2013). medical clinics with experience in diagnos- and developed countries in an article of Maguire believed that differences in cul- ing autism spectrum disorders (Congress- References the Harvard College Global Health Re- ture may play a factor into why the preva- Gov, 2014). Since the H.R. 3054 is designed view (Maguire, 2013). In many post-in- lence rates are low in developing countries to provide education and training to health- Autism Speaks (2012). New research finds dustrial, developed countries, many are compared with developed countries. An care professionals in developing countries, annual costs of autism has more than tripled experiencing an increase autism spectrum example is in South Korea, where having it allows for professionals to share informa- to $126 billion in the U.S. and reached 34 bil- prevalence rate; however, in a developing a child diagnosed with an autism spectrum tion on how to best utilize the intervention lion in the U.K. Family Services. Retrieved country such as China, it is estimated that disorder is a stigma that forces families to and prevention treatment plans, and create from www.autismspeaks.org/about-us/ 1.1 in 1,000 children are diagnosed with avoid having treatment or early detection a team to address the growing autism spec- press-releases/annual-cost-of-autism-triples an autism spectrum disorder. This brings of the developmental disorder (Maguire, trum prevalence rates (CongressGov, 2014). to question: why there is a difference in 2013). Other countries, such as India, be- The growing prevalence rate of autism is Autism Society of America (2014). Autism prevalence between developed and devel- lieved that it was natural for males to speak a big concern leaving many families to wor- through the lifespan. Living with Autism. oping countries (Maguire, 2013)? Maguire later on in life; however, evidence may show ry and doubt as to when and how to treat the Retrieved from http://www.autism-society. believed that the reason for the differences that they suffer from a language impairment disorder. The importance of the H.R. 3054 org/living-with-autism/autism-through- is because many developed countries have which is associated with the autism disorder helps to provide many developing coun- the-lifespan/ better autism spectrum detection and ser- (Maguire, 2013). With cultural differences tries techniques, education, and training to vices that provide intervention and preven- in their perspective of autism, there needs to help combat autism. The medical clinics Centers for Disease Control and Preven- tion treatment plans. In many developed be more educated and trained professional in the developing countries would be bet- tion (2014). Data & statistics. Autism countries, doctors have more experience to help utilize treatment plans with cultural ter equipped to detect and diagnose autism and are familiar with autism spectrum dis- awareness, and reduce costs of the disorder spectrum disorders at an early age. With see Autism Act on page 26 AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 25

Dear World from page 17 The ride called Space Mountain was so See, I am like a fish inside an aquarium. son if they had autism in Botswana. fun. My dad took me and my brother Char- I want to watch you from behind the glass. She is not shy, my mom. front of me. It makes me feel good but I lie back to the park until late one night and I want to stay in my school and eat my reg- “Oh yes,” he smiled at her. It was not a can tell it does not make my mom feel good we rode it all together and it made me so ular food and listen to my favorite radio real smile that made his face look happy, because she leaned over and asked me to happy. I could not stop talking about it. station and go to bed at my normal time. I but more like he stretched the corners of stop. She said we should have brought my Sometimes I can’t stop thinking or do not like surprise trips. his mouth. “It is everywhere.” stress ball, and if I had known about the talking about things, like that night at din- I am safe here, in my bubble. Your Then she asked about services, and evalu- trip, I would have reminded her a lot of ner I kept asking and talking about the sounds are muted and hushed, and I can ations, and doctors, and he just looked at her times to pack it. death penalty because I saw something tell the difference between a nasty word and smiled once more, gentle-like this time. So I tried to keep my hands very still but about it on the television at the airport. and a nice word. I don’t have to listen to “You know, there was a boy in our vil- I felt like a balloon that was going to pop. Whatever I am thinking about gets big your big loud donkey laughs or shut my lage who could not hear a single sound. I had to do something, so I shouted “What and huge in my mind and it pushes every- eyes against your blinking lights. Nothing at all. But still, we found a way to the F*&%!” thing else to the side, like an elephant in a At Disney we took something called a talk to him. We loved him.” I know these words are bad, but some- crowded elevator. shuttle a lot. My dad was always shouting, I was thinking hard about a boy who times they feel so good to say. They feel My mom got a little mad and said, “Jack! “Come on! We’re going to miss the shut- could not hear a single sound, because I hot and salty on my tongue and when I We are in Disney! Please stop talking about tle!” and then when we got to the pick-up think that would be weird and also maybe shout them, it’s like letting a little bit of air the death penalty.” place it would have just left like a second kind of nice not to have to hear loud don- out of the balloon. The next day we went to a place called ago so we’d stand around and wait another key laughs, but when I looked at my moth- Words are very weird for me. If they Epcot, which was totally boring and not as twenty minutes. er I could tell she wasn’t thinking about sound even a little bit different I have to fun as the park called the Magic Kingdom One night we were riding the shuttle that boy at all. I could tell she was thinking double-check in my brain before I recog- because it was all about learning. very late. It was very dark inside, and I about me. nize them. We were on line to go on a ride inside of was sitting next to my mom and think- She was thinking about always trying to Like the way my bus driver likes to this big ball that looks just like one of the ing about snow and nice words and nas- find new ways to talk to me, and to hear say, this is the route home, and she says golf balls my dad keeps in the garage but ty words, and then I remembered another me, and to love me—to nudge me out of it like the root on a tree. When I hear her he tells us not to fool with, and I turned to word I didn’t know. my fish tank and into the wide, open world. say this, I think of tall, straight trees with my mom and asked when it was going to “Mom. What does for loner mean?” She knows I don’t want to be a loner. soft leaves. snow at home. “Well, it means, like, to be alone. A per- I think I know the answer, world. Then one day we had a substitute bus The lady in line behind us heard me, and son who is alone. Why are you asking? Do You and I, we can’t be something or driver and he said we’re going to take the she said, “Oh, you said it! You said that you think you’re a loner?” someone we’re not. We can’t change all the same route home, except he didn’t say it nasty word, snow!” “Without you. For yes.” way for each other. But this does not mean like the tree root, he said it like rowt, so I had to do my double-checking because “Oh, Jack.” we won’t be friends. then I had to do my double-checking and I didn’t think snow was was a nasty word. I could not see her face, but I could feel So I think you should keep being your figure out what he was trying to say. Snow is nice. It is cold and pretty and her wearing her sadness on her body like an stinky, funny, loud, busy self. Tell your We went to visit places called parks ev- sometimes we don’t have to go to school if itchy sweater, the kind she makes us wear jokes and laugh your laughs and smell ery day, except they look nothing like reg- we get a lot of it. for our Christmas picture. I put my head on your smells. ular parks that have slides and stuff. These “Snow is not NASTY. You are freaking her shoulder and then she put her head on And I will continue to be myself. I will places are huge and crowded and they have WRONG.” my head, and we stayed that way until the do my double-checking and try to under- music and food and people called char- When I said this to her, the smile dis- shuttle stopped, even though I don’t usual- stand your words and shrink the elephant in acters wandering around in their big silly appeared from her face like someone had ly like to touch people for that long. my brain so he’s smaller, more like a turtle. costumes. wiped it away with a sponge. My mom put On our second to last day in Disney, we In the meantime, if you happen to notice The minute we stepped into the park her arms around my shoulders and turned had lunch in an African restaurant called a boy standing in the airport and his fingers everyone—especially my brothers and sis- me away, and then she turned back to the Sanaa, where we could look out the win- are dancing in front of his eyes, be kind. ter—started to be so bossy about me. It was lady and said a few things quietly. I think dow while we ate and watch giraffes and Be tender. making me really mad. she was telling them about my autism. ostriches strolling around. Our server was I am trying. “Jack! Over here!” I used to hate when she did this because a nice smiley man named Boylson. His “Where’s Jack?” it made me feel bad. But my mom tells me nametag said he came from Botswana, From, “Jack, stay with us!” a lot that autism is not a secret - it is not which is in Africa, and he didn’t get mad Jack Finally I screamed, “Everyone stop something to feel embarrassed or ashamed when I shouted, “This food. Makes no BOSSING me!” of, because it is as much a part of me as the SENSE TO ME.” “What Color Is Monday?” is available Mom took me aside and told me our fam- freckle on my left leg. After we were done eating this funny on Amazon.com and BarnesandNoble. ily just wants to make sure I am safe and World, all day long you flash and dance bread called naan and my brothers and sis- com. You can also follow Carrie on her that I don’t wander off, but it still didn’t around me being your funny, stinky, noisy, ter wandered away from the table to look at weekly blog: www.CarrieCariello.com and feel very good. I am eleven, not a baby. happy, scary self. You confuse me. the animals, I heard my mother ask Boyl- Facebook.com/WhatColorIsMonday.

Benefit from page 13 employment in technology-related fields is systematic mental work is needed in such weapons, ranging from firearms to nuclear of even greater significance to a substan- occupations as bookkeeping. I am certain weapons, and brought about considerable them. Their various mechanisms are very tial part of the autistic population. Most that numerous individuals with autism damage to our environment. What I am sophisticated (having many “degrees of notably, a number of firms have committed have been employed in these and other re- proposing here is that modern technology freedom” as referred to by engineers) and themselves to train and employ adults on lated fields. Also, the mechanical talents of has had both kinds of effects on the autism can emulate a wide range of body move- the autism spectrum in the field of software many individuals with autism are of great community as well. ments and facial expressions. As such, they testing. This area is particularly suitable value in the repair, maintenance, and even One adverse result of technology has can display a broad repertoire of amazingly for individuals with autism, as it involves design of such devices. Consequently, I been (especially since the industrial rev- human-like behaviors. Most interesting to very repetitive, systematic, highly-fo- am once again certain that many individu- olution) the disappearance of jobs which me, however, was that they were originally cused work to detect subtle coding errors als on the spectrum have been involved in had been performed by human workers but developed to train technologists in the field in computer software, and this population these areas, both as repairpersons (which I were now done by machines, and the very of robotics, until someone brought his small is known to often be exceptionally good at no doubt would have been had I not had the need for which was sometimes eliminat- daughter with autism to see the robot and finding a variety of mistakes and pointing opportunities I did) and as engineers. ed. Most recently, this happened because saw that she related to it immediately. This them out. Unfortunately, while many technologies of dramatic increases in the capabilities of was a significant breakthrough because, Praiseworthy and commendable as such have provided great benefits for humanity, electronic and especially computing and up to that time, she had never been able to initiatives are, however, I am strongly of some have resulted in great harm as well. communication technologies (the power relate to another human. The robot designs the opinion that there is nothing new about The modern age is largely defined by trans- of which have grown exponentially over were then adapted for working with chil- individuals with autism working with and portation, communication, automation, in- time). These have greatly reduced the need dren with autism, who generally respond to even developing technologies – in fact, I formation, and other technologies that lib- for human labor in a number of areas, par- them much better than they do to humans. believe that this has probably been the case erated man from the hardships of physical ticularly those involving repetitive or sys- Their appeal could even be seen in the re- for much if not all of human technological labor, allowed him to travel anywhere in tematic tasks. While such developments sponse of neurotypical adults, who related history. I am also convinced that there are the world and communicate with just about have certainly affected everyone in our to these little robots much as they might to a number of occupations that have capital- everyone, provided nearly unlimited access society, I strongly believe that individu- a puppy or a kitten or even a small child. ized on the strengths and talents of many to many forms of human knowledge and als with autism, who tend to be especially As significant as the practical uses of on the spectrum throughout history and up expression, and generally brought about adept at such tasks, are affected by this in modern technologies might be to the au- to recent times. The ability to spot errors a quality of life that our ancestors could much greater proportion than the general tism community, the prospects of learning and correct them is essential for proof- not even have imagined. Nevertheless, it about, working, and eventually finding reading and the ability to do repetitive and has also resulted in the most destructive of see Benefit on page 26 PAGE 26 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2016

Online Degree from page 19 by well-designed e-learning environments. an electronic portfolio (e.g., Mason, Pegler, disabilities and ADHD: Lessons learned Early and ongoing assessment of individual & Weller, 2004). The electronic portfolio from a model demonstration project. Learn- adjustments, and the reduction of distrac- learning styles and learning needs at the on- (e-portfolio) requires that the student (or ing Disability Practice, 20, 103-118. tions during test taking could be controlled set of the program ensure that the necessity instructor) select samples from coursework by the student to meet their particular needs for individualization in instruction is not throughout the semester. These work sam- Broun, L. (2009). Take the pencil out of the at any particular time (Myhill et al., 2007; forgotten. This could be realized through ples could be evaluated not only in terms process. Teaching Exceptional Children, Oravec, 2003). Difficulties with time-man- a systematic learning strategy intervention of a summative assessment tool for each 42(1), 14-21. agement and organizational skills that are program that assesses needs at the onset, de- course, but as a means to evaluate the ef- often addressed in the typical college class- signs personalized interventions and directly fectiveness of the individual supports and Carroll, S., Blumberg, R., & Petroff, J. room through adult prompting or relying instructs the skill using behaviorally sound accommodations in place. Finally, attention (2008). The Promise of liberal learning: Cre- on the course instructor’s ability to provide instructional techniques, evaluation of the must be given to assure the generalization ating a challenging postsecondary curricu- clear instructions and timelines, can be sup- learned techniques within course-specific of skills to real-world applications. Re- lum for youth with intellectual disabilities. ported in the online classroom through plat- contexts, and ongoing support and practice search has demonstrated that skills learned Focus on Exceptional Children, 40(9), 1-12. form design while simultaneously promot- of the techniques until independent per- to mastery within virtual environments ing independent functioning through the use formance is observed (Allsopp, Minskoff, can generalize to real-world settings (e.g., Klemes, J., Epstein, A., Zuker, M., Grin- of non-socially mediated stimuli (i.e., topic & Bolt, 2005). Training in evidence-based Herrera, Jordan, & Vera, 2006; Hetzroni & berg, N., & Ilovitch, T. (2006). An assis- and assignment areas presented one at a time learning practices for individuals with ASD Tannous, 2004). Providing intensive train- tive computerized learning environment where assignments are visually broken down for faculty or the provision of highly skilled ing based on real-world job or volunteer for distance learning students with learning into smaller components; visual reminders support staff to act as “mentors” for stu- site contexts through virtual reality simula- disabilities. Open Learning, 21(1), 19-32. on the screen for due dates [Klemes, Epstein, dents will be needed and a systematic plan tions could prepare the student for the ex- Zuker, Grinberg, & Ilovitch, 2006; Stromer, to fade these outside supports. It is feasible pectations within their selected site. Myhill, W., Samant, D., Klein, D., Kaplan, Kimball, Kinney, & Taylor, 2006]). to utilize individuals with such expertise in By offering a fully online undergraduate S., Reina, M., & Blanck, P., (2007). Dis- The literature on successful college tran- applied behavior analysis (ABA) and ASDs program for students with ASDs, the social tance education initiatives and their early sition and retention for students with ASDs as individual mentors as well as instructors barrier to obtaining a college degree can 21st century role in the lives of people with emphasizes the need for intensive supports for those courses or support programs that be circumvented. While it is necessary that disabilities. In E. Bailey (Eds.), Focus on and accommodations related to the social directly address the core deficits found in the program addresses the social needs of Distance Education Developments (1-38). environment of the college campus (Taylor, the disorder. The role of these mentor-in- this student population, it can do so through Nova Science Publishers. 2005; VanBergeijk et al., 2008). A great deal structors should include assessment of stu- carefully planned and proactive interven- of the resources needed to support the suc- dent strengths, needs, and learning styles tions designed for the individual student Robertson, S., & Ne’eman, A. (2008). Au- cessful completion of a college degree is re- as well as to act as a liaison between stu- rather than reactive strategies implemented tistic acceptance, the college campus, and lated to this core deficit of ASDs (e.g., Col- dent and academic content course instruc- within the often chaotic social realm of the technology: Growth of neurodiversity in lins, Hedrick, & Stumbo, 2007). Offering a tors (Carroll, Blumberg, & Petroff, 2008; typical college campus. The technology is society and academia. Disability Studies fully online degree program would immedi- Taylor, 2005). As the mentor’s role fades available. Effective computer-mediated Quarterly, 28(4). ately tear down this very real barrier to the from direct support and instruction to eval- interventions have been identified. Online student’s realization of a college education. uator and facilitator, the student should be education can create an academic environ- Stromer, R., Kimball, J., Kinney, E., & No longer would supports be necessary in able to demonstrate the self-advocacy and ment that is at once stimulating and rigor- Taylor, B. (2006). Activity schedules, com- the dorm, in the dining hall, at extracurricu- self-management skills necessary to seek ous, but also individualized and supportive puter technology, and teaching children lar activities, or in the lecture hall. The stu- out assistance when needed from these ser- to the specific needs of the ASD population. with autism spectrum disorders. Focus on dent would be free to access college-level vices (e.g., Wehmeyer, 1999). Autism and Other Developmental Disabili- courses without the social pressures of the As in any evidence-based intervention, Chelsea Donlin has her MS in Applied ties, 21(1), 14-24. typical college campus, much like the use of ongoing assessment throughout the program Behavior Analysis and Autism and is a computers for writing tasks has eliminated is necessary to evaluate the effectiveness of Board Certified Behavior Analyst. To con- Taylor, M. (2005). Teaching students with the pressure of graphomotor difficulties in the supports and accommodations that were tact Chelsea, please call (845) 554-9695 autistic spectrum disorders in HE. Educa- attending to the content of academic materi- put in place to address these needs. This can or email [email protected]. tion and Training, 47(7), 484-495. als (Broun, 2009; Richardson, 2010). be realized through the use of the wealth of A college or university program seeking permanent product samples inherent in on- References VanBergeijk, E., Klin, A., & Volkmar, F. to develop an online degree program for line learning environments (e.g., discussion (2008). Supporting more able students on individuals with ASD must not only rely forums, assignments, exam results). One Allsopp, D., Minskoff, E., & Bolt, L. (2005). the autism spectrum: College and beyond. on the inherent characteristics of online promising mechanism to gather all of these Individualized course-specific strategy in- Journal of Autism and Developmental Dis- learning and the general benefits provided course-work products would be the use of struction for college students with learning orders, 38, 1359-1370.

Different from page 18 tional awareness, effective listening, and share their considerable technical skills in and writer as well as a nonprofit program being comfortable around others, from spite of their perceived impairments with coordinator with vast experience advocat- upon the qualities I seek for self-improve- above) I seek out in colleagues and friends. soft skills. What I long for is a time when ing for vulnerable populations. He can be ment. Because of my work, I have added I believe we in the autism advocacy society can look past labels; instead of dis- reached at [email protected]. For more “advancing opportunities for others less community must continue to speak out so missing people for their weaknesses, we information about Matt’s speaking and fortunate than I” to the list of traits (a sense that our friends, siblings, and loved-ones must value people for their strengths. training, visit www.harnessthepromise. of humor, self-control, empathy or emo- with autism are given opportunities to Matthew Ratz, MEd, CESP, is a speaker com or visit www.linkedin.com/in/mjratz.

Autism Act from page 24 113th Congress (2014). H.R. 3054 Text. Diament, M. (2012, March 30). Autism Global Autism Assistance Act of 2013. Retrieved from http://beta.congress.gov/ costs soar to $137 billion. Disability Scoop. H.R. 3054. Retrieved from https://www. Spectrum Disorder. Retrieved from http:// bill/113th-congress/house-bill/3054/text Retrieved from http://www.disabilityscoop. govtrack.us/congress/bills/113/hr3054# www.cdc.gov/ncbddd/autism/data.html com/2012/03/30/autism-costs-billion/15286/ Datz, T. (2006, April 25). Autism has Maguire, C. (2013, April 16). Autism on Centers for Disease Control and Prevention high costs to U.S. Society. Press Releas- Dickler, J. (2012, April 2). The financial the rise: A global perspective. Harvard Col- (2014). Facts about ASD. Autism Spec- es. Retrieved from http://archive.sph. toll of autism. CNN Money. Retrieved lege Global Health Review. Retrieved from trum Disorder. Retrieved from http:// harvard.edu/press-releases/2006-releases/ from http://money.cnn.com/2012/04/02/ http://www.hcs.harvard.edu/hghr/online/ www.cdc.gov/ncbddd/autism/facts.html press04252006.html pf/autism/ autism-on-the-rise-a-global-perspective/

Benefit from page 25 inexpensive that their repair is economical- increased; it may very well be that many tism community is concerned, we can only ly impractical. The result is that many indi- more were employed in the past than is the be certain that, as new technologies con- population. In particular, occupations such viduals with autism who in the past might case today. tinue to come about, they will significantly as proofreading and bookkeeping which have found employment in these areas are If there is any lesson to be learned from affect us. The best that we can do is try to require these abilities have been decimat- no longer able to do so. Unfortunately, the the history of technological advances, it is understand their effects so that the com- ed, because the tasks are now performed relatively few software testing jobs, ben- that it is very difficult, if not impossible, munity can benefit from them as much as by computer software such as word proces- eficial though they certainly are, cannot to predict what technologies will be devel- possible, but is also able to address any ad- sors and spreadsheets. Also, those involv- make up for these huge losses. The result oped in even the near future. It is still more verse consequences that they might bring. ing repair and maintenance of mechanical, is that unemployment among individuals difficult to foretell what they will be used electrical, and electronic devices are much with autism, who have well-known chal- for, let alone how they will be used; only For more information, Karl can be less needed because these have become so lenges in finding employment, has greatly the future itself will tell us. Where the au- reached at [email protected]. AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 27

Silver Bullet from page 15 uct system, whether acquired commercially, as have individually stated and measurable http://www.afaa-us.org. modified or customized, that is used to in- goals. Independent evaluation rules apply though it is these devices that most imme- crease, maintain, or improve the functional to decisions regarding technology. Don’t Cidav, Z., Marcus, S. C., & Mandell, D. S. diately come to mind today when using the capacities of a child with a disability (Individ- forget to include within the IEP the require- (2013). Age-related variation in health ser- term technology. Technology equally re- uals with Disabilities Education Act, 2004) ment for training or additional supports vice use and associated expenditures among fers to the process and framework5 within and services for school district personnel children with autism. Journal of Autism and which the devices need to be used – one 2. Individuals with autism often need exter- to become fluent in the use of this technol- Developmental Disorder. 43(4), 924-931 such important technology is Applied Be- nal stimulus prompts to initiate or maintain ogy and to provide that the technology will havior Analysis (ABA). Behavior analysis behavior (McDuff, Krantz, & McClanna- follow the student across environments in- Colby, K. M. (1973). The rationale for is a field of inquiry dedicated to investigat- han, 2001). Technological advancements cluding home and community. Regarding computer-based treatment of language dif- ing and modifying behavior in a system- in the last decade have created cost effec- repairs, according to an OSEP Policy Let- ficulties in nonspeaking autistic children. atic way. ABA is: Data-based, Analytical, tive automated prompting devices with ter (1994), a school has only two options: Journal of Autism and Childhood Schizo- Able to be replicated, Socially important, the ability to deliver the same levels of repair the family’s device, or purchase its phrenia, 3(3), 254-260. Contextual, and Accountable (Mayer, Sul- prompting with less human interaction and “own,” in order to assure access to working zer-Azaroff, & Wallace, 2012). In combi- obtrusiveness and often less human effort equipment as per the IEP. Cooper, J.O., Heron, T.E., & Heward, W. nation, we use these technologies to allow in managing prompt delivery (e.g. Tabor, L. (2007). Applied behavior analysis. Sec- us to improvise, adapt and overcome any Seltzer, Heftlin, & Alberto, 1999). 5. For example, the application of stimulus ond edition. Upper Saddle River, New Jer- challenge the environment or function control is technology to a behavioral clinician. sey: Pearson Merrill Prentice Hall. presents as a barrier to improving ability. 3. An influx of epic proportions is expect- Not only is technology innovative and ed with the numbers of children identified 6. Assessment Considerations for the Use Dell, A., Newton, D., & Petroff, J. (2008). additional research into the use of tech- with ASD entering the adult system within of Technology in Education: Assistive technology in the classroom. Up- nology to teach is occurring at a rapid rate the next 10-15 years (Advancing Futures per Saddle River, NJ: Pearson Education. (necessary, because much clinical use of with Autism, 2015) at a cost of $137 billion Level of Development: At what level is the technology remains unsupported as evi- per year (Cidav, Marcus, & Mandell, 2013) student’s fine motor skills (for assessment Gerhart, P. F., & Lainer, I. (2011). Address- denced-based practices), but the students in an environment where there are fewer of the ability to navigate hardware devices: ing the needs of adolescents and adults with and their needs are continuously evolving. and fewer services available for adults and buttons; swipe screens); Tracking skills; autism: A crisis on the horizon. Journal of These needs must be constantly evaluat- less and less professional support for the problem solving skills; ability to chain tasks. Contemporary Psychotherapy, 41, 37-45. ed.6 Vocabulary must be kept functional development of instructional plans (Ger- and current and reflect the relevant envi- hart & Lainer, 2011) elevating the need to Level of Communication: What is the stu- Individuals with Disabilities Education ronments, age appropriate terminology in use technology to ease this burden to the dent’s current primary modality of com- Act, 20 U.S.C. § 1400 (2004. order to increase the child’s capability for highest priority. munication; can the methodology be effec- communication need to be considered and, tively digitized (most often can); will the McDuff, G. S., Krantz, P. J., & McClannah- most importantly, behavioral technologies 4. The IDEA requires an IEP team to con- device be necessary for voice output (is the an, L. E. (2001). Prompts and prompt-fading such as data collection to ensure that the sider the need for the use of (assistive) volume sufficient)? strategies for people with autism. In C. Mau- use of the technological devices contrib- technology and while IDEA does not spe- rice, G. Green, & R. M. Foxx (Eds.), Making ute to appropriate progress toward goals cifically define what “consideration” by Environmental Factors: Will the device be a difference: Behavioral Interventions for must always be used in conjunction with the IEP team means, the case law generally used across environments (it should). What autism (pp. 37-50). Austin, TX: Pro-ed. any hardware and software. The handheld regards “consideration” to mean “careful are the considerations for security (insur- devices or applications that run them alone and deliberate thought” and the general- ance, tracking ability – for student and Merriam-Webster Collegiate Dictionary, are not the silver bullet to educational in- ly accepted practice suggests that the IEP device); Considerations for stigma (use of 1994, p.1210. novation some may think. So remember, team needs information about: earbuds vs. bulky headphones). a comprehensive approach utilizing all Office of Special Education & Rehabilitative available technology is the proper path to • The student, environment, including gen- Cost: Is Wi-Fi sufficient or is a data plan Services (1994). Retrieved December 10, integrating technology into your interven- eral education curriculum access needs required? Is a phone necessary or can an 2015 at: http://atto.buffalo.edu/registered/AT- tion strategies. iPad meet needs? Is a computer or tablet Basics/Foundation/Laws/OSEPletters.pdf. • IEP goals, benchmarks, objectives with the capability to make calls and texts Thomas L. Zane, PhD, BCBA-D, is a better solution? Mayer, G. R., Sulzer-Azaroff, B., & Wal- Clinical Director and Gloria M. Satri- • The full range of Assistive Technolo- lace, M. (2012). Behavior analysis for ale, Esq, BCAB, is Executive Director at gy possibilities Remember, device and software trials can lasting change. Second edition. Corn- Preparing Adolescents and Adults for Life be an empirical way to determine appropri- wall-on-Hudson, NY: Sloan Publishing Co. (PAAL). For more information, visit www. There are established tools to assist in the ate technology. Adapted from Dell, New- paalprogram.org or contact Dr. Zane at “consideration” process such as the SETT ton, & Petroff (2008). Taber, T.A., Seltzer, A., Heflin, L.J., & Al- [email protected]. Framework, found at www.joyzabala.com. berto, P.A. (1999). Use of self-operated au- Districts have been required to pay for typ- References ditory prompts to decrease off-task behavior Footnotes ical devices (iPad, etc.), software and data for a student with autism and moderate men- plans and the use of this technology can Advancing Futures for Adults with Au- tal retardation. Focus on Autism and Other 1. Any item, piece of equipment, or prod- appear in the SDI section of the IEP as well tism (2010). Retrieved January 22, 2013 at Developmental Disabilities, 14, 159—166.

Motivate from page 20 language, following directions and social Andre Spivey is the founder and CEO email [email protected]. skills. What I have discovered is that in- of Live 2 Learn Differently, Inc. He comes more (mainly mobile apps) to add new in- tegrating or “gamifying” his education has with a wealth and diversity of IT experience References formation into our memory - memory is increased his motivation and his ability to spending over 8 years in the US Air Force. one of the most important functions of the retain the information, steps and processes. During my time in the Air Force, my son Carey, B. (n.d.). How we learn: The surpris- brain especially when it comes to learning. This same effect is true for the large per- was diagnosed with autism. As he began ing truth about when, where and why it hap- Studies have shown that in the “normal” centage of those who learn through gam- school I became inspired to find a way that pens (Random House trade paperback ed.). brain, there are differences in gene expres- ing; this is also why early education heavily I could use my experience to help him learn. sion in the temporal lobe and frontal lobe, involves songs and games to teach simple We built the start-up Live 2 Learn Different- Coughlan, S. (2014, December 3). Tablet while in the autistic brain there is very little language and number skills. Even the adult ly to have a huge impact on the technolo- computers in ‘70% of schools’ - BBC News. difference between the two. This in partic- workplace is increasingly implementing gy used to teach children with autism and www.bbc.com/news/education-30216408 ular affects the synaptic function, which competition and gaming to motivate its other special needs. Through this he devel- directly relates to how neurons in the workers (McGonigal, 2011). Children with oped the mobile apps “HearMePlease” and Heasley, S. (2013, January 23). Families brains share information. As a software de- autism that become accustomed to using “GoToZoo” and many more these educa- Deeply Impacted By Autism Aggression, veloper and a father of a son with autism, I technology early will be able to order food, tional apps for children with autism. Some Study Finds - Disability Scoop. https:// take into account how my son will process purchase plane tickets, communicate, con- of these apps used currently by schools in www.disabilityscoop.com/2013/01/23/ information while learning and what will nect socially and use grocery self-checkout the United States and South Africa. Andre, families-autism-aggression/17157/ motivate, inspire and leave a lasting mem- lines among other skills, which will give has a B.A. in Organizational Management ory. While taking this into account as a them more independence and experiences and Leadership Skills from Morris Brown McGonigal, J. (2011). Reality is broken: developer, I build and develop apps based that can improve their life and livelihood College, and Graduate Certificates in Fi- Why games make us better and how they can on his individual education plan (IEP). as adults. All of us are becoming more and nancial Management, Business Leadership change the world. New York: Penguin Press. This enables me to measure his improve- more visual in processing information, so Skills and Executive Leadership Skills from ments year to year to determine how well why not take advantage of these technolo- Cornell University. He is also Business Seth, A. (2014). 30-second brain: The 50 most integrating technology and mobile apps are gies in order to teach and improve the lives Communications major at Harvard Exten- mind-blowing ideas in neuroscience, each ex- helping him improve in communications, of children with autism (Seth, 2014). sion School. For more information, please plained in half a minute. Sydney: Pier9. PAGE 28 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2016

CRISPR from page 4 “Microduplications, especially, is some- lect for those that carry the mutation. They This article was originally published thing we’re able to do now that I never could then inject these mutant cells into mouse on Spectrum and is reprinted with permission. creating sets of mice for each animal and have imagined being able to do before,” embryos, transforming some small propor- You may view the original article, published then interbreeding them over years. says Talkowski. He says he plans to recon- tion of germ, or reproductive, cells. (Once 14 December 2015, at https://spectrumnews. Autism is thought to stem from the ad- struct even more complex rearrangements in a germ cell, a mutation is retained across org/news/crispr-way-to-cut-genes-speeds-ad- ditive effect of multiple mutations, so this in DNA, such as DNA inversions that flank generations.) This implantation technique vances-in-autism/. advantage is a particularly powerful one duplications or deletions. “Everybody’s has never worked in primates. for research on the condition. working on different things to do here, and I CRISPR instead allows researchers to References think it’s really exciting,” he says. tweak DNA directly in a single-cell em- Flips and Swaps bryo, so that it is present in every result- 1. Cong L. et al. Science 339, 819-823 Autism Zoo ing cell in the body of primates, including (2013) PubMed http://www.ncbi.nlm.nih. Michael Talkowski and his team at Har- humans. Feng and his colleagues are using gov/pubmed/23287718 vard University are exploring how muta- To make these intricate manipulations, CRISPR to generate a breeding colony of tions in CHD8, a leading autism candidate, Talkowski is banking on the continued marmoset monkeys with autism mutations. 2. Mali P. et al. Science 339, 823-826 influence gene expression. sharpening of the tool, in ways that enable Their first planned model is a monkey (2013) PubMed http://www.ncbi.nlm.nih. Some people with autism carry one mu- even greater precision. lacking SHANK3. gov/pubmed/23287722 tated copy of CHD8. Last year, in a bid to In January, Zhang and his colleagues study how CHD8 might lead to autism, Tal- reported that CRISPR can not only block Tricky Treatments 3. An M.C. et al. PLoS Curr. 6, ecurrents. kowski’s team used the traditional method but boost the expression of target genes. hd.0242d2e7ad72225efa72f6964589369a of RNA interference, in which a string of This tweak opens up therapeutic avenues Because CRISPR makes it easy to create (2014) PubMed http://www.ncbi.nlm.nih. RNA binds and blocks expression of a gene — by, say, compensating for the mutant changes that can remain stable over gener- gov/pubmed/24761311 — in this case, CHD8 — and tracked the copy of a gene by enhancing expression ations, it offers promise as a gene therapy. effects. This method is not ideal because re- from the unaffected copy. In another study Its application in people still seems far off, 4. Firth A.L. et al. Cell Rep. 12, 1385-1390 searchers are guessing at the level of expres- published this month, Zhang tinkered with however. (2015) PubMed http://www.ncbi.nlm.nih. sion when one copy of the gene is mutated. CAS9 to minimize its binding to unintend- In April, Chinese researchers used the gov/pubmed/26299960 CRISPR, by contrast, allows researchers to ed target regions.9 method to modify the gene involved in a reproduce those effects directly. Even before these tweaks, CRISPR held sometimes-fatal blood disorder, called beta 5. Mandal P.K. et al. Cell Stem Cell 15, “CRISPR has enabled a way to very the promise of opening up autism research thalassemia, in fertilized embryos.10 To cir- 643-652 (2014) PubMed http://www.ncbi. accurately, repeatedly and robustly model to more sophisticated animal models than cumvent ethical concerns, the researchers nlm.nih.gov/pubmed/25517468 genome mutation in ways that mimic what mice. “One of the reasons why we have used embryos from a local fertility clinic we see in actual [people],” says Talkowski, very little progress [in autism research] is that were not viable. They reported that the 6. Tsuchiya Y. et al. Genes Cells Epub assistant professor of neurology at Harvard probably that we don’t have adequate ani- method replaced the gene with low efficien- ahead of print (2015) PubMed http://www. University. mal models for it,” says Feng. cy and may have unintended consequences. ncbi.nlm.nih.gov/pubmed/26456390 His team has now switched to using The rat genome is more complex than The study reignited a long-held debate CRISPR. Another team has used CRISPR the mouse, and not as responsive to tradi- about how far researchers should go to 7. Platt R.J. et al. Cell 159, 440-455 to generate stem cells that lack one copy of tional genetic engineering methods. Using make genetic fixes in people. Early this (2014) PubMed http://www.ncbi.nlm.nih. CHD8.8 The mutation is stable over gen- CRISPR will make engineering rats easier, month, a group of nearly 500 scientists gov/pubmed/25263330 erations, providing a ready and renewable says Rodney Samaco, assistant professor and ethicists concluded that the scientific source for future experiments. of molecular and human genetics at Baylor community needs to address potential mis- 8. Wang P. et al. Mol. Autism 6, 55 CRISPR can also recreate deletions or College of Medicine in Houston. Compar- uses of the technology before allowing any (2015) PubMed http://www.ncbi.nlm. duplications of long stretches of DNA that ing the rat and mouse model of the same more experiments on human embryos. nih.gov/pubmed/26491539 occur in people with autism. In October, mutation may enhance our understanding Still, the idea that CRISPR may have a Talkowski’s team reported at a confer- of the mutation’s effects better than study- therapeutic use is exciting, says Feng. 9. Slaymaker I.M. et al. Science Epub ence that they have been able to engineer ing it in one type of animal, he says. “This is really opening the doors for many ahead of print (2015) PubMed http://www. duplications or deletions of the 16p11.2 Primates are even more difficult to ma- things we could potentially do,” he says. ncbi.nlm.nih.gov/pubmed/26628643 chromosomal region, both of which are nipulate than rats, says Feng, who has tried “[CRISPR] changed our ways of thinking associated with autism. They have since many approaches. To create mouse models, and approaching autism research. Instead of 10. Liang P. et al. Protein Cell 6, 363-372 also recreated duplications and deletions researchers typically engineer mutations in focusing on research, maybe we should also (2015) PubMed http://www.ncbi.nlm.nih. of 15q13.3, another candidate region. embryonic stem cells so they can easily se- think about therapeutic approaches.” gov/pubmed/25894090

Free Support Group For Families of Adults with Asperger’s Syndrome and High Functioning Autism

The focus of the support group is to assist families in understanding the complex issues related to their adult child impaired with Asperger’s Syndrome or High Functioning Autism. At many of our meetings, we have speakers address various topics of importance related to these syndromes.

For more information, visit our website www.FAAHFA.com or contact the facilitators: Bonnie Kaplan - [email protected] | Judith Omidvaran - [email protected]

Socialization and Life Skills Group For Asperger’s Syndrome and High Functioning Autistic Adults

Focused on: Employment and Vocational Issues, College Coaching and Supports, Socialization, Self-Advocacy, Dating, and Relationships

For further information contact the facilitators: Patricia Rowan, LMSW - (914) 736-7898 - [email protected] | Susan Cortilet, MS, LMHC - (845) 406-8730 - [email protected] Upcoming Meeting Dates: 2016 - 1/24, 2/28, 3/20, 4/17, 5/22, 6/12 Westchester Arc The Gleeson-Israel Gateway Center 265 Saw Mill River Road (Route 9A) Hawthorne, NY 10532 AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 29

BEHAVIORAL HEATH NEWS Annual Leadership Awards Reception Please Join Us in Honoring

Peter C. Campanelli, PsyD John J. Coppola, MSW Linda Rosenberg, MSW Ann Marie T. Sullivan, MD Senior Scholar, McSilver Institute, Executive Director President and Chief Executive Officer Commissioner NYU Silver School of Social Work New York Association of Alcoholism National Council for New York State Founder and Retired President and CEO and Substance Abuse Providers Behavioral Health Office of Mental Health Institute for Community Living “Advocacy Award” “Leadership Award” “Public Service Award” “Lifetime Achievement Award” Tuesday, June 21, 2016 5:00 PM - 8:00 PM NYU Kimmel Center - Rosenthal Pavilion, 10th floor 60 Washington Square South, New York, NY 10012 Online Registration: www.mhnews.org/AwardsReception.htm 5:00 PM Networking Reception - 6:00 PM Awards Presentation Final Registration Deadline - May 30, 2016

Proceeds from this event will go towards enhancing behavioral health education and awareness by expanding the free print distribution of Behavioral Health News and providing free access to the Behavioral Health News online library of science-based behavioral health information, education, advocacy and vital resources in the community.

Contact Ira Minot with any questions at: [email protected] or (570) 629-5960 PAGE 30 www.mhnews-autism.org AUTISM SPECTRUM NEWS ~ WINTER 2016

Social Media from page 6 information feels, consider if there is positive or negative feelings while on- Do not give out your social security any risk to you. For example, if some- line or when a question is asked. Assess numbers, Medicare card numbers. probation. Their son invited Paul Hines, one has asked for your address, phone your feeling before answering. Do you When you give out any of these three who had impersonated a much younger number, credit card information, so- feel happy, scared, excited, intrigued, sets of six digits, one becomes vul- person, to their house through a social me- cial security number, date of birth, regret, confident, a sense of adventure nerable to identity theft: phone num- dia website. etc., keep in mind that with this infor- or a sense of danger? ber, date of birth, and social security mation you can be found, stolen from, number. How to Stay Safe or hurt; Not only you, but also those 10. In our culture, we are taught that it with whom you live. is polite (nice) to answer questions 13. Finally, remember that in our culture I recommend that individuals with Au- strangers and others ask. Yet, some are we are taught that it is “nice” to an- tism and Asperger’s (actually all teens) 5. Keep in mind that just because some- inappropriate. They make us feel very swer questions and respond to re- design a Risk Reduction Plan to be able one asks for information, this does not queasy and uncomfortable. This is the quests made of us. People with autism to safely use the internet and social me- mean you have to give it. In fact, think body helping alert us to danger. It is who have been trained in compliance dia. I recommend that their parents and about the request. Why in the world essential to pay attention and get out training formats with rewards and other caregivers including teachers and would they want that information? of that conversation and away from consequences for behaving in a par- consultants, therapists, and others in their What should you do? You can decline. communication with that person. This ticular way may have a harder time lives assist in the development of the plan You can provide fake information. is our intuition that some are now call- breaking those rules and finding a as well as a monthly practice and review ing our internal GPS system. Listen personally empowered way to manage of the plan, making changes as appropri- 6. If someone asks you to do something to the warnings. Declining to answer the rules of safety while enjoying the ate to the individual’s increasing skills in risqué, for example to send pictures of personal questions or providing per- social benefits of social media. Better discerning safe and unsafe practices. This yourself naked or specific body part sonal information is a smart skill that to be safe. approach mirrors the Individual Response naked, do not do so. Why not? Most we are taught as adults. How do you Plans used for physical and sexual abuse likely the person asking for you to do decline the request? You can either say You can go online to search “safety rules (Baladerian, 2014). this is a predator. They do not like you. no, just get offline and out of that con- for social media use” and find many more It is essential to keep in mind that the They want to exploit you. They want versation or provide fake information recommendations. As things change quick- rules for safety in internet and social me- to satisfy their own selves. They can if you feel you cannot decline. Do not ly online, check again every three months. dia use are not unique to those on the later use the photo to blackmail you, to give the numbers of your friends. You spectrum, but apply to everyone using the threaten you into doing things you do can also say that you have a personal To contact the author send an email to internet. And the phone. And email. There not want to do but are feeling scared rule not to provide any important in- [email protected] or visit www. is likely only a tiny number of folks who not to do because they said they’d formation to anyone whom you have disabilityandabuse.org. have never been deceived and lost money, show your photos to others and identi- not “vetted.” That means, someone safety or something else by trusting anoth- fy what you have done. with whom you have had enough time References er person whose plan was to deceive. Let’s in person to believe that they mean not fool ourselves into thinking that this a 7. If you post pictures of yourself naked well. There is never any reason to give Ault, R. (2015, June 8). Autism campaign- special problem for those on the spectrum. or just certain body parts, or in a sex- a friend or acquaintance your social er Kevin Healey: ‘Hate crimes aren’t taken It is a problem for everyone. ual act, those pictures cannot be “tak- security number or banking informa- seriously enough’ Retrieved December 7, en back.” They will be on the internet tion. If that is asked, that is a danger 2015, from www.stokesentinel.co.uk/Au- Do’s and Don’ts for Improving forever. If later in your life you want to sign. Stop communication with that tism-campaigner-Kevin-Healey-Hate- Social Media Safety get a job, you may not get the job as person. crimes-aren-t/story-26656709-detail/ they might see these pictures and tell story.html 1. Know that predators seek victims on you “you showed poor judgment, so we 11. Another way to check how something social media sites. cannot expect you to be responsible.” feels is to ask yourself, how would you Baladerian, N. 2014, A Risk Reduction feel if your parent or sibling or other Workbook for Parents and Caregivers of 2. Know that you cannot trust someone 8. Do not post information that tells peo- loved one found out what had been People with Intellectual and Developmen- you meet online to be who he says he ple you will be gone for a few weeks happening in your social media com- tal Disabilities, Spectrum Institute. or she is. on vacation. Why not? Think about it. munications? Would they be proud of If someone online knows your address you? Would they approve? Ask them! Staff, News (2015, August 17). Police: Man 3. Consider how what you are about to and is a robber, they might take advan- They will be happy to provide guid- asked teen with developmental disabilities do feels. Does it feel a bit scary, risky, tage of your absence. ance for you. for nude photos. http://kval.com/news/lo- or adventurous? Does it make you cal/police-man-asked-teen-with-develop- uncomfortable? Who could you easi- 9. Think about your feelings when on- 12. Always decline requests for photos, mental-disabilities-for-nude-photos ly tell that you are about to do this or line. If you feel something is creepy or phone numbers, addresses or places have done it? weird or uncomfortable, get out of that that you go. Check such request out Tips for Parents. (n.d.). National Crime site. Do not respond to others from that with parents, or put them on a list of Prevention Council, from http://www. 4. When you are thinking of how sharing site. And do not revisit it. You may have things to not share on social media. ncpc.org/topics/internet-safety

Techie from page 16 working to change the paradigm for edu- of technology. tech sector to fill and students with ASD cation and employment for young people Media experts and educational tech- will become tomorrow’s gainfully em- people on the high-functioning end of the with disabilities. nologists akin learning to program with ployed if they are given the opportunity autism spectrum often have an amazing At TechKidsUnlimited.org youth learn learning to read way back in the Renais- to explore tech as youth. By working with ability to hyper-focus on a task. “They open-source or free software in work- sance. They argued, should only the few students on the spectrum ages seven and up may really flourish at engineering-type shops and often continue experimenting - the monks and clergy - know how to to learn and use state of the art software tasks or computer design, where their in- with the program at home. For example, read and henceforth, control the knowl- and hardware, students with ASD can be- teraction with people is somewhat limit- high support student J.L. learned the edge of the world? To rephrase: should come the techies of tomorrow. ed,” Evans says. complex 3D game development software only the smartest math students and most At TechKidsUnlimited.org, a NYC- Unity in a recent TKU workshop where gifted science students hold the secret For more information, please visit Tech- based tech educational not-for-profit start- students were learning Unity to make a to programming? With the advent of the KidsUnlimited.org, @techkidsu, facebook. ed by a parent educator and her son who game which was then deployed to a 3D Gutenberg Press literacy rates soared just com/techkidsunlimited, and www.lolaapp.com. learns differently, technology classes are Oculus Rift headset. Staff noticed that by placing the Bible into the hands of the given to students in weekend and week- by the second day of the workshop, he masses. The same can be said for intro- References long workshops to students on the spec- had gone way ahead of the other stu- ducing students of the 21st century to pro- trum as young as 7 up to age 19. Students dents who were still trying to master this gramming where they then can become How high-tech jobs could solve the autism un- who have been diagnosed with Autism complex and industry-standard software. producers and makers. Getting students to employment crisis. (2013, June 6). http:// Spectrum Disorder, that have learning When asked, he mentioned that he went “geek out” by teaching them to learn how www.theverge.com/2013/6/6/4399468/ and emotional disabilities, can become home and downloaded the free software to make games, apps, websites and more autism-tech-jobs-unemployment-cri- technologists early on by learning along- program onto his own computer (which using step-by-step coding curriculum and sis-solution side peers in supported workshops with took an hour!) he then opened his account intuitive software is gaining momentum. a 3:1 student ratio and a social worker in and continued working on his project Students with autism spectrum disorder More people with autism are getting training every program. By creating, developing throughout the evening. This inspiring should not be ignored and left out of this for technology jobs - The Hechinger Report. and sharing the tools of technology in a anecdote made it clear that students with conversation. (2015, November 15). http://hechingerre- supportive and nurturing individualized ASD really have an innate ability and tal- The hope is that in the next ten years, port.org/more-people-with-autism-are-get- environment, TechKidsUnlimited.org is ent to learn and create with today’s tools we’re going to have a lot more jobs in the ting-training-for-technology-jobs/ AUTISM SPECTRUM NEWS ~ WINTER 2016 www.mhnews-autism.org PAGE 31

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