ASN Summer 2019 Issue

UTISM PECTRUM EWS A YOUR TRUSTEDS SOURCE OF SCIENCE-BASED AUTISM EDUCATION,N SUMMER 2019 INFORMATION, ADVOCACY, AND COMMUNITY RESOURCES VOL. 12 NO. 1 Supporting Older Adults with Autism

By Karen Parenti, MS, PsyD challenges that older adults with autism and Maggie Haag, MEd, BCBA, LSW face including, but not limited to: social Melmark PA isolation, communication challenges, financial problems, not enough support with personal care, lack of employment options, utism is a lifelong diagnosis, inadequate health care, lack of housing and and as adults with autism age, lack of advocacy. many of the medical, physical, Aand mental changes they face Residential Model for are similar to those of typically aging Older Adults with Autism adults. As adults with autism get older, it is extremely important for family members One way to support older adults with au- and/or professionals working with these tism is by living in residential community individuals to understand the aging pro- homes where care is provided consistently cess. If professionals and family members and regularly by qualified direct support learn as much as they can about both the professionals, along with a team of other person they support and what to expect as professionals. All older adults with Autism that person grows older, they will be bet- do not require this level of care. However, ter equipped to notice any subtle behavior many older adults need this level of support or physical changes which may alert them to navigate their environments and reach that new interventions are necessary. It is their maximum potential. This article high- important to note that changing physical lights how one residential provider offers needs may require home modifications; ongoing support to older adults with autism. changing healthcare needs may require autism spectrum. According to Mukaeto- vided care for an adult with autism. The As adults with autism age, their group more specialized care; and changing psy- va-Ladinska & Stuart-Hamilton (2015), authors found these participants to be homes or living environments may need to chiatric and neurological needs, such as de- there continues to be much discussion deeply worried about the long-term care be modified or adapted to their changing mentia, may require constant monitoring. about the limited research available on and management of autism in regards to needs. Needed environmental modifica- Life expectancy rates are increasing in older adults with autism. In this study, re- aging, especially in relation to long-term tions can sometimes be overlooked for the United States, and that is no different searchers interviewed 45 adults who were support in their communities. Additional- for many individuals diagnosed on the either diagnosed with Autism or who pro- ly, the researchers identified a number of see Supporting on page 10

An Autism Spectrum News Interview with Temple Grandin

By David H. Minot, BA Schizophrenia the Steep Price of the Hu- Publisher man Brain? This article basically says the Autism Spectrum News same genes that make our brains big also are involved in autism and schizophrenia. With autism, you get extra growth in the emple Grandin has been at the back of the brain, which might account forefront of autism awareness for for art, math or music skills, but that then the past 50 years. She has seen au- short-changes the social circuits. That pa- Ttism unfold from an unknown to a per was a mind-blower to me. Some other much better recognized diagnosis, yet she interesting studies that have surprised me is keenly aware that gaps in understanding scientifically, Solitary Mammals Provide and unfulfilled priorities remain. This is- an Animal Model for Autism Spectrum sue of Autism Spectrum News is themed Disorders. When you look at animals, “Supporting Older Adults,” and so, appro- some are more social than others. For ex- priately Temple shares her unique perspec- ample, in the big cats, lions are more social tives as an autistic woman, now in her 70s. than panthers. One of the things I talk a lot about to the public is that autism in its mild What has surprised you the most over forms may be just part of biological vari- the years regarding autism awareness ation. Look at Silicon Valley, it is run by and scientific research? people on the mild end of the autism spectrum running fortune 500 companies! Awareness has improved, but I’m concerned about the many young people who Dr. Temple Grandin You wouldn’t have achieved the level of come up to me and say that all they want success in your career without the moti- to do is to become autism activists. For me, primary identity is career. Where people be aware, but I’m seeing too many smart vation your mother gave you, pushing you career is my primary identity and autism make autism their primary identity, I’m kids become too focused on the label. to try new things and discover the world. is a secondary identity. I wouldn’t want concerned. If I had diabetes, I wouldn’t A recent scientific article surprised me:

to change, I like the way I think but my make that my primary identity. It’s good to Genomic Trade-Offs: Are Autism and see Temple Grandin on page 12

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Chair Cindy Alterson, PhD, BCBA, Principal of Devereux NY CARES Clinical Director, Devereux Advanced Behavioral Health-New York Debbie Pantin, MSW, MS-HCM, President and CEO Outreach Joel Bregman, MD, Psychiatrist Vice-Chair United Community & Family Services Rachel A. Fernbach, Esq, Deputy Director and Assistant Joseph D. Buxbaum, PhD, Director General Counsel, New York State Psychiatric Association Seaver Autism Center - Icahn School of Medicine at Mount Sinai Secretary Susan Cortilet-Jones, MS, LMHC, Integrative Wellness Coach for Adults Yvette Brissett-André, MPA, Executive Director and CEO Discovering Your World, Corp. Unique People Services Stephen E. Freeman, LCSW Treasurer The Freeman Group Kimberly Williams, MSSW, President and CEO Vibrant Emotional Health Lynda Geller, PhD, Founder, Spectrum Services A Cooperative of Independent Practices & Organizations, New York, NY Members of The Board Anita Appel, LCSW, Senior Health Care Consultant Michael Gilberg, Esq. Sachs Policy Group Special Education Attorney, NY/CT Peter D. Beitchman, DSW, LMSW, Principal Ami Klin, PhD, Director Behavioral Health Consultation Marcus Autism Center

Constance Y. Brown-Bellamy, MPA, President and CEO Harold S. Koplewicz, MD, President Brown Bell Consulting Child Mind Institute Jonathan P. Edwards, LCSW, ACSW, M. Phil., Program Consultant New York City Department of Health and Mental Hygiene Cecelia M. McCarton, MD, Founder and Executive Director The McCarton Foundation, The McCarton School (for Autism) Roy Kearse LCSW, CASAC, VP Recovery Services & Community Partnerships Samaritan Village Judith R. Omidvaran Autism Parent Advocate, New York Matthew Loper, CEO Wellth Theresa Pirraglia, Co-Founder and Board Member FECA, The Foundation for Empowering Citizens with Autism Barry B. Perlman, MD, Past President New York State Psychiatric Association Howard Savin, PhD, Chief Clinical Officer Jorge R. Petit, MD, CEO First Children Services Coordinated Behavioral Care (CBC) Pat Schissel, LMSW, New York Director Keri Primack, CFP, Senior Financial Advisor, SVP Asperger/Autism Network (AANE) Gerstein Fisher Alison Singer, President Joshua Rubin, MPP, Principal Autism Science Foundation Health Management Associates Founding Chairman Fred Volkmar, MD, Professor Yale Child Study Center Alan B. Siskind, PhD, LCSW Linda J. Walder, Esq. Founder and Executive Director Executive Staff The Daniel Jordan Fiddle Foundation Ira H. Minot, LMSW, Founder and Executive Director Dianne Zager, PhD, Head of School David H. Minot, BA, Associate Director and Publisher Shrub Oak International School

Autism Spectrum News is a Quarterly Print and Online Publication of Mental Health News Education, Inc, a 501(c)(3) Nonprofit Organization All inquiries regarding advertising, subscriptions, sponsorships, and submitting an article should be directed to: David H. Minot, BA, Publisher Vincent Dante-Maniglia - Publishing Intern, Shrub Oak International School (978) 733-4481 • [email protected] • 460 Cascade Drive, Effort, PA 18330 • AutismSpectrumNews.org Mental Health News Education, Inc. does not endorse the views, products, or services contained herein. We are not responsible for omissions or errors. Mental Health News Education, Inc. is not responsible for articles submitted to us without the final approval of the organization’s Executive Director, CEO, or Public Relations Department. All articles and Advertisements are subject to final approval by our Editorial Board. We reserve the right to edit any article sent to us. Copyright © 2019 Mental Health News Education, Inc. All rights reserved. Content contained in this publication may be reproduced for one-time personal use. However, anyone wishing to reproduce and distribute any content from within this publication for purposes other than personal use must request this intention in writing directly to the publisher. Failure to do so will be in violation of the copyright held by this publication. AUTISM SPECTRUM NEWS ~ SUMMER 2019 AutismSpectrumNews.org PAGE 3

Table of Contents Editorial Calendar

Improving Communication Skills Fall 2019 Issue “Autism and Community Engagement” 1 Supporting Older Adults with Autism Deadline: September 5, 2019 1 An Autism Spectrum News Interview with Temple Grandin Winter 2020 Issue 4 Autism After 65 - Making the Most of the Golden Years “Autism and Neurodiversity” Deadline: December 3, 2019 8 Best Practices in Support of Aging Adults with Autism Spring 2020 Issue 16 Older Adults on the Spectrum Face Major Challenges “Supporting Girls and Women with Autism” 17 Why Autism Parents Say: “I Can Never Die” Deadline: March 5, 2020

18 Supporting Pioneers: Building Better Networks for Aging Adults Summer 2019 Issue “Siblings and Autism” Supporting the Autism Community Deadline: June 4, 2020 6 The Camouflage of Autistic Women 11 Housing for Adults with Autism: A Growing Crisis Stay Connected with ASN Online 14 A Practice Run for Air Travel

15 Breaking Down the Barriers of Social Communication AutismSpectrumNews.org for Young Adults with Autism @AutismSpectrumNews 19 Five Tips on How to Best Support a Sibling of a Child with ASD @AutismSpecNews 21 How Do I Fund My Child’s Applied Behavior Analysis?

Autism Spectrum NewsDesk For over 10 years, Autism Spectrum News has been providing a trusted source of science-based autism information, 13 Autism Science Foundation Statement on the Use of education, and quality resources in the community. Medical Marijuana for People with Autism

13 Neuroscientists Develop a New Genetic Model for Autism

14 NYU Honors Marco Damiani with Kriser Medal Email [email protected] to participate in ASN!

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AANE - Neurology Matters in Couples Therapy Chapel Haven NYIT Vocational Independence Program Achieve Beyond Chimes International Psychological Assessment Resources AHRC New York City College Internship Program Targeted Lease Capital, LLC Behavior Therapy Associates Daniel Jordan Fiddle Foundation Threshold Program at Lesley University Berklee Institute for Arts Education & Special Needs Felicity House Westchester Jewish Community Services Book: When My Heart Joins the Thousand - A Novel Melmark Yale-SCSU “Jobs, College & Beyond” Autism Conference Brown Bell Consulting, LLC MHS Assessments Center for Career Freedom Mindy Appel, LCSW, ACSW, LMFT PAGE 4 AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SUMMER 2019

Autism After 65 - Making the Most of the Golden Years

By Susan J. Moreno have ASD to understand that it is perfect- Consultant ly natural to begin losing some acuity in Indiana Resource Center for Autism sight, hearing, balance, and flexibility. Indiana University – Bloomington Finding a caring gerontologist to be part of their care team can enhance this understanding. If they are in situations in which or the most part, this article is they can converse with others in their age not based on research. I am using group, it helps them to understand that personal life experiences and the they are not alone in these experiences. Freports of individuals with whom I have corresponded and/or personally • Preparing for eventual loss of health known for many years through research is not always possible. None of us for my previous book, The Partner’s Guide can see what may be in store for us in to Asperger Syndrome. Many of the sub- terms of health challenges. Although jects covered here apply to all seniors. some genetic testing is leading to more However, the extent and consequences are information on future health risks, it amplified when ASD is involved. may be better to just focus on living a Aging is what we all hope for, but are healthy lifestyle and keeping a positive still surprised when the associated chal- attitude. Maintaining a balanced diet, lenges occur. There is no existing “list” of regular exercise, attending to any med- challenges for the aging process in individ- ical needs, and seeking counseling and uals on the autism spectrum. The impact of • All older people become childish in Here are some things that those of us group support when necessary are ways aging, however, can be much more trau- their behavior and thoughts. who love and/or care for a senior who has to achieve this. matic and/or challenging for the individual ASD need to do: with ASD due to less flexibility (physically • All older people just want to sit back As the person with ASD loses their and mentally), more sensory issues, and de- and watch the world go by. • Appreciate the gifts and skills of the flexibility, we must strive to increase our creasing social skills. older person with ASD. Many have a flexibility in our interactions and plans Many myths exist concerning those who Due to advances in medical care, peo- lifetime of experiences, talents, and ex- concerning them. Here are some things we become senior citizens or what many de- ple are living longer than ever in record- pertise that can be shared with others. caretakers must learn: fine as “old age.” For the purpose of this ed history. Along with this, our focus on When they are asked to do this and en- article, I will consider senior citizen status quality of life as a senior is ever increas- joy the process, their feelings of being • Allow more time for the person’s speech as starting at 65. Just a few myths regarding ing. Now that we recognize the vast num- needed and important increase. processing, both expressive (speaking) the aging process are: ber of individuals with ASD, we include and receptive (hearing and interpreting). them in our concerns about quality of life • Prepare for their eventual loss of skills. It • Older people are less mentally stable. in old age. is important for those who are aging and see Golden Years on page 22 AUTISM SPECTRUM NEWS ~ SUMMER 2019 AutismSpectrumNews.org PAGE 5 PAGE 6 AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SUMMER 2019

The Camouflage of Autistic Women

By Lukas Arnold women often learn to assume a neurotypi- auticon cal camouflage in their early childhood.

The Strain of Autistic Women at Work omen are diagnosed with autism 2-3 times less often Many people with autism, where unem- than men. However, studies ployment is common among 90%, have Windicate that the number of great difficulties with the challenges in- unreported cases of women with autism volved. Small talk can be a stressful situ- is much higher than previously thought. ation and a handshake can be awkward. It Read here why women are so rarely diag- is the social surroundings, the profiling and nosed and why their daily work can be an self-expression with which autistic people immense psychological challenge. have problems, not the work itself. For this reason, they are often unemployed despite Researchers Uncover Gender-Difference their high qualifications. in People in the Autism Spectrum Especially autistic women are under pressure to correspond to a gender stereo- A team of researchers from Cambridge type. Relaxed conversation, understanding University (1) took a closer look at the com- and courteous behavior as well as physical pensation strategies of people with autism. clothing are some of the unspoken expec- People on the autism spectrum often find tations with which those affected are con- it difficult to assess social situations and tween externally observable behavior and many women are not diagnosed at all in the fronted. In order to master the unpleasant interpret them “correctly.” In some cases, inner experience than men. In other words, first place. The majority of existing diag- small talk at the coffee machine, many there is even a so-called facial blindness, they can hide their social deficits better nostic criteria are designed for men. Even women in the autism spectrum learn cor- i.e. the complete inability to interpret the than their male counterparts. general practitioners and psychiatrists still responding phrases or sentences by heart other person’s facial expression. In order have a widespread myth that autism does at home, which they can recall in such sit- not to attract attention, many people with Camouflaging in the Social Jungle not exist among women. Closely inter- uations. Many people with autism are not autism therefore develop certain mech- woven with this is the classic role model able to understand the complex social rules anisms to conceal their gap - with devas- The compensation mechanisms de- of women: from an early age, girls are and consequently do not want to take part tating psychological consequences. For scribed above are also aptly called “cam- expected to give others a good feeling of in discussions about the weather, fashion the continuous observation and imitation ouflaging.” Because those affected often being nice and social. From this perspec- or the latest gossip. of their fellow human beings is associated try to hide their autism - for fear of not tive, it makes sense that autistic women It is also not uncommon to practice cer- with great cognitive effort. In this context, being accepted. There are several reasons inevitably develop increased camouflaging tain postures or facial expressions. the researchers found that women with au- why this becomes a challenge, especially skills. A diagnosis, if one is made at all, can tism have a much higher discrepancy be- for women. It is a foregone conclusion that take years. One of the reasons is that these see Camouflage on page 24 AUTISM SPECTRUM NEWS ~ SUMMER 2019 AutismSpectrumNews.org PAGE 7 PAGE 8 AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SUMMER 2019

Best Practices in Support of Aging Adults with Autism

By Marlene Ringler, PhD spectrum diagnosis, about what motivated prevalence rate among the adult popula- Author, Consultant and me to write my book: I Am Me: My Per- tion though, fortunately, there does appear International Speaker sonal Journey with My Forty Plus Autis- to be a growing awareness and interest in tic Son (released in May, 2018), I describe the subject of the aging adult on the spec- what may be referred to as a “tsunami” - trum. After all, yesterday’s autistic child is he DSM V which was released to the nearly 50,000 children in the US alone today’s autistic adult. Temple Grandin, for the public in May, 2013, took the who each year face an adult world so sadly example, one of the most well-known and controversial decision to consol- unprepared to deal with the growing needs respected speakers, writer and advocate Tidate the diagnosis of Asperger of the adult on the autism spectrum. I elab- for those on the autism spectrum, writes Syndrome, or High Functioning Autism orate by commenting about the lack of em- with passion and candor about the obsta- (HFA), under the umbrella of Autism pirical research, valid data, and ongoing cles she faces as a professional diagnosed Spectrum Disorder (ASD). The particular- resources committed to understanding the at a young age with autism. Today, in her ism of Asperger Syndrome had provided transition of care needs facing a growing seventies, she challenges her audiences to a framework with which families affected aging autistic population: the senior citizen think about the multiple and unique needs by an autism diagnosis could think about in our communities who is diagnosed with of the aging adult. Dr. Tony Attwood, too, their children with perhaps a more specific an autism spectrum. addressing a Conference in May, 2018, at notion of how the lives of their diagnosed We know that an increase in the prev- the Eretz Israel Museum, “ASD/Asperger children might unfold. In the mid-nineties alence rates of children diagnosed with Syndrome – Aspects of Practice and Re- during the period when there appeared to autism indicate a trend which is unlikely search” sponsored by the Israeli Asperger be increased curiosity about this mysteri- to be reduced or even slowed down over and HFASD Association (EFFIE), laments ous neurobiological condition, my son at the next decade (Halladay, 2018). When I the current state of lack of reliable research age 24 received the diagnosis of Asperg- was researching and writing my book, the about the aging adult with an autism spec- er Syndrome. As the years passed and he generally accepted prevalence rate was one trum diagnosis. matured, I began to search for more infor- out of 68 children diagnosed as having an We have seemingly come a long dis- mation about autism. But what I discovered count their special needs (Robison, 2018). autism spectrum diagnosis. Today, nearly tance from the days when the movie Rain was while there was interest in the devel- As a Mother of a 45-year-old son diag- 5 years later, the Center for Disease Con- Man, released in 1988 and starring Dustin opment of children on the spectrum and nosed with high functioning autism (HFA) trol, the federal agency in the US which Hoffman as an adult on the spectrum, first discussions about interventions as applied I live in a state of fear, worry and anxiety supports health preparedness, charts the brought to the attention of the world the behavior analysis (ABA) pioneered by the about just what will happen to my son rate at 1 out of 59, a significant uptick in plights and challenges faced by a family clinical psychologist Ivar Lovass, there when I am no longer around to provide prevalence rates among children. It is in- affected by an autism spectrum diagno- was scant information about an adult on daily guidance, support and love. When I teresting to note that global prevalence sis. Credited as addressing a taboo subject the spectrum. In fact, the lack of valid sta- speak at conferences such as the Jerusalem rates among children are being continuous- while raising the level of awareness of tistical data about an adult with autism may Professional Forum (in October, 2018), an ly updated, collected and analyzed; howev- what autism as defined in the early eighties explain why lawmakers, policymakers, organization of professionals interested in er, the data reflects the growth only among and decision makers rarely took into ac- research on subjects related to an autism the young. No data to date exists on the see Best Practices on page 26 AUTISM SPECTRUM NEWS ~ SUMMER 2019 AutismSpectrumNews.org PAGE 9 PAGE 10 AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SUMMER 2019

Supporting from page 1 discussed with the individual and guard- ian/representative, as well as presented to these individuals, as many behavioral a Human Rights Committee (HRC) to en- changes are assumed to be related to the sure the least restrictive interventions are biological factors of the aging process being utilized. (Baker, Fairchild, and Seefeldt, 2015). Finally, program specialists along with However, changes or modifications made other IDT and family members develop to the environment can have a positive ef- individualized support plans for the adults fect on some behavioral changes (Baker, based on an assessment of likes, dislikes, Fairchild, and Seefeldt, 2015). Residen- strengths and needs, safety awareness, tial providers need to assess the impact of communication skills, medication adminis- the environment on behavioral changes, tration skills, community skills, etc. These as well as assess appropriate behavioral program plans include individualized goals programming. In addition to changing be- to support the adult in skill acquisition or havioral needs, physical needs for older skill maintenance so the person served can adults with autism may change as well. For continue to grow and thrive. These plans example, gait issues can appear or worsen include the assistance and support needed as individuals age. Previously ambulatory in the community to ensure the person can adults may present as more of a fall risk, maintain and/or build relationships with may exhibit decreased mobility, or even members of the community outside of their become non-ambulatory. Residential pro- direct care team. This level of community viders should be constantly assessing the integration and inclusion is very important accessibility and adaptability of their resi- Karen Parenti, MS, PsyD Maggie Haag, MEd., BCBA, LSW for older adults with autism, as it allows for dential settings. In order for individuals to the highest degree of access to the person’s age safely in their residential homes, the specialists, supervisory personnel and, of ment systems to improve or maintain pos- local community. homes must meet the physical needs of the course, the adult served and his/her guard- itive behaviors. Behavior analysts will re- older adults living in them. ian or representative if appropriate. By view data on behavioral changes and make Summary This is also true for older adults with working as a team and reviewing the needs updates to behavioral intervention strate- autism who live at home with family of the individual from both a medical and gies based on the behavioral data. Many aspects of care need to be con- members or in apartment settings. As- behavioral perspective, all appropriate and Since older adults with Autism may sidered when providing residential ser- sessing the environment regularly is key necessary interventions can be considered. have other comorbid conditions, psychi- vices and/or support to older adults with to successfully supporting older adults atrists are an essential part of the IDT as autism. While taking care of the person’s diagnosed on the autism spectrum. While Ongoing Assessment by they review behavioral data and medical physical health is vital, ensuring the envi- making these changes, it is also important Credentialed Professionals changes for the individual, making ap- ronment in which they live is accommo- to remember to keep the environment as propriate medication recommendations dating and accessible is just as important. familiar as possible, as many adults with At Melmark, the ongoing physical and based on this information. The behavior As such, residential providers need to autism enjoy routines and familiarity in behavioral needs of older adults with au- analyst shares information regarding any continually assess the environment of their homes and bedrooms. tism are assessed and monitored regularly behavioral changes, as well as sleep infor- their residences in addition to the indi- by professionals such as physical thera- mation, and presents all relevant data in viduals who live in those homes. Highly-Qualified and pists, Speech and Language Pathologists graph format so the psychiatrist can ob- Well-Trained Staff (SLPs), nurses, primary care physicians, serve trends. All medication changes are see Supporting on page 20 behavior analysts and psychiatrists. There is a tremendous need for qual- Physical therapists regularly assess the ified and trained staff to work with older person’s ability to navigate their current adults with autism. Staff who are trained environment, and make recommendations in not only providing care, but in the aging for environmental changes to increase process are better able to help these adults safety and independence for each adult build and maintain skills. Highly-trained served. Since the research is limited on staff are essential to ensuring the great- older adults with autism, it is imperative est degree of independence is maintained that primary care physicians and nurses through the lifespan. assess the ongoing medical and healthcare Training of direct support staff in the needs to ensure the individual’s current proper care and teaching strategies for old- healthcare needs are continually being er adults with autism is a very important met. Similar to younger adults with au- component of staff training. Training on all tism, older adults diagnosed on the autism important job duties surrounding the aging spectrum have difficulty communicating process, providing personal care, teach- their healthcare needs and may not notice ing skills, and following behavior support subtle changes. plans should be done using a behavior SLPs can provide support in both feed- skills training model (BST). BST includes ing issues and communication strategies. a verbal description of the skill, a succinct The SLP will regularly assess individuals written description of the skill, a demon- to ensure their current diet is appropriate, stration of the skill by a competent trainer, and will make recommendations for mod- and the trainee performing the skill with ifications to diets based on changes with feedback from the trainer. This process the individual. SLPs also work on goals continues until the trainee is competent to promote or maintain communication with the skill (Parsons, Rollyson, & Reid, skills. For example, if an older adult with 2012). By training direct support staff on autism who was previously using sign lan- all necessary job duties utilizing this mod- guage to communicate can no longer use el, the residential provider can be sure that that means of communication, the SLP support staff are fully competent in the de- may have that person use an alternate livery of services. If needed, a provider can mode, such as an electronic tablet with access expert speakers or consultants to talking pictures or icons. provide additional training on Behavioral Behavior analysts are key to the IDT as Gerontology or the aging process. they monitor and assess any behavioral Additionally, residential programs that changes, and may develop appropriate be- serve older adults with autism must have a havioral interventions, based on the prin- specific model of service delivery for this ciples of applied behavior analysis. These population. It is of the utmost importance may include antecedent-based strategies, to have a collaborative interdisciplinary such as the implementation of a visual approach to care. These interdisciplinary schedule for an individual who did not teams (IDT) should include physical ther- need that type of intervention in the past, apists, nurses, behavior analysts, psychi- and these may also include consequence atrists, primary care physicians, program strategies, such as appropriate reinforce- AUTISM SPECTRUM NEWS ~ SUMMER 2019 AutismSpectrumNews.org PAGE 11

Housing for Adults with Autism: A Growing Crisis

By Mandy H. Breslow, LCSW, MS Ed. process of deinstitutionalization began. grams, proposed in it’s 2019 federal budget Founder and President When Willowbrook’s doors were finally a cut of $763 billion to Medicaid over the Indie Living, Inc. closed in 1987, residents were placed in next ten years. People with developmen- community-based housing. The options tal disabilities rely on Medicaid funds to available were group homes, adult homes pay for housing, education and vocation- his article will discuss the need and supportive apartments. In the 33 years al training, as do the agencies that pro- for appropriate housing for adults since, these models have not changed, de- vide these services (The Center for Public with Autism. New and emerging spite the changing and growing needs of Representation, 2019). This will have cat- Tprograms will be explored. In full this population. astrophic effects far beyond the crisis we disclosure, this writer is the president and This begs the question: what happened? have now. founder of Indie Living, Inc., a housing One theory is the unexpected, dramatic rise Other issues affecting the availability of program currently in the early stages of in prevalence. According to Science Daily, housing for this population include afford- development in New York. the rate of children diagnosed with Autism ability, accessibility and discrimination. was 1 in 150 in 2000. Current estimates put Average rent for a one-bedroom apartment Over the next decade, the CDC estimates that number at 1 in 6; nearly double in less is 104% of the average SSI benefit. This that 500,000 teenagers with Autism Spec- than 20 years (Science Daily, 2018). As creates a real barrier to individuals in need. trum Disorder will age out of their school- our understanding of Autism grows, we’ve Lower income families often do not have based services and move into adulthood. As become more adept at diagnosing the dis- the resources to access and navigate the adults, the need and desire for person-cen- order at earlier ages and have realized that system, which further precludes them from tered housing opportunities is growing ex- Autism occurs on a spectrum, rather than finding housing. Finally, there is the NIM- ponentially. An estimated 80,000 individu- Mandy H. Breslow, LCSW, MS Ed. a static, one-size-fits-all disorder. Agencies BY attitude that faces organizations and als sit on waiting lists that can be as long charged with the task of providing hous- their participants. The fear and stigma of as 15 years. The number of individuals to live with parents or other family mem- ing for these adults were overwhelmed and the disabled block real estate opportunities on waiting lists is expected to grow as the bers indefinitely, unless dramatic changes underfunded. Salaries for professional and (Mary E. O’Byrne, Esq. and Stephen W. prevalence of Autism is predicted to intake place. support staff remained low, further limit- Dale, Esq., 2019). crease by 15% over the next ten years. The In 1972, a young reporter named Ger- ing agencies by creating staffing shortag- In the absence of adequate government discrepancy between availability and need aldo Rivera managed to sneak into the in- es, or hiring under-qualified workers. Ris- support, the private sector has started to is an ever-expanding chasm (Autism, ePar- famous Willowbrook State School, which ing rates, limited funding and poorly paid step in and create new housing opportu- ent Connect, 03/16/2018 03/12/2018). turned out to be, at best, a warehousing fa- employees combined to create the perfect nities. The common thread between them Michael H. is a 51-year-old man who cility for individuals with intellectual and storm for today’s housing crisis. is that they are developing programs that lives with his aging parents. He is my developmental disabilities. The reality that In order to meet the current and future address the needs of the whole person. brother and he has Autism. His housing op- was exposed was that Willowbrook was a demands for housing, we need to look out- Current models are outdated. Community tions are limited by availability and appro- brutal, abusive and dehumanizing facili- side the box at new and innovative con- residences provide a sense of belonging priateness. It is likely that he, along with ty that cared nothing for the people who cepts in housing models. The government, 69% of adults with Autism, will continue lived there. As a result of this expose, the which has historically funded housing pro- see Housing on page 22 PAGE 12 AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SUMMER 2019

Temple Grandin from page 1 they just use a set dose. If it’s too high, it’s a simple change to colored paper solved end up on social security disability insur- a mess when dealing with the anxiety. For her problem. What I say is, if something ance because they need the health care. How did that shape you into the person years I have been preaching the use of a is cheap, totally safe, takes a few minutes I’ve talked to some who would be happy to you are today? lower dose - if they experience excitation, to try it, then yeah, we are going to go give up their SSI check as long as they still lower the dose. I’ve seen that work over ahead and try it. But if something is ex- had the Medicaid. Without good medical As a young child, my mother stretched and and over again. pensive, possibly dangerous, and takes a care, I wouldn’t be here today. motivated me and gave me choices; there long time to see if it’s going to work, then The other thing is transportation. Some was always a choice. For example, I was Can you comment on early intervention? I rely on evidence-based proven-effective people have health care, but they can’t get afraid to go to my Aunt’s ranch. Well, if I approaches. to the services they need due to a lack of hadn’t gone to my Aunt’s ranch, I wouldn’t In a lot of states, we have a real problem transportation. This is also an issue on get- have been in the cattle industry. My mother with parents getting early intervention Have the challenges and impact of au- ting to social and recreational events. gave me a choice: you can stay for a week services. In some states, a child doesn’t tism changed for you as you have aged? Transportation is also crucial for jobs. I or you can stay all summer - not going was get into early intervention until age 4. In talked to a very innovative woman in Colo- not one of the choices. other states, they have early intervention, I believe that some people with autism get rado that has put together great jobs for peo- but when the kid turns 3, they are dropped better with age. For myself, I found my ple on the spectrum. Transportation is her What is your view of sensory problems from the earliest intervention program. All thinking got better with age, because as I number one issue and they are at the point in Autism? too often, they are waiting a year to get read more and more, I have a bigger da- where they are going broke on Uber cars. treatment, which is absolutely horrible. tabase because I’m a bottom-up thinker. I Housing is another issue, we’ve got so Sensory problems and anxiety are two believe my thinking got better as I got into many homeless people on the spectrum things that really cripple some of these How has your health changed as you my 40s, because then you have enough on the street. In fact, right now I’ve been individuals. For research, I think a prior- moved into your older years? Have you knowledge, and it also gets rid of a lot of communicating by phone with a homeless ity should be focusing on sensory issues. had to make any changes? the black and white thinking. So, my brain man who’s autistic. He happens to have a I often refer to a scientific paper titled has done just fine with age. very bad problem with saying inappropri- Environmental Enrichment as an Effec- I’ll be 72 this summer. Well, I don’t climb I’m still traveling a lot and keeping my- ate things to people - when he says them to tive Treatment for Autism. Sensorimotor fences anymore, due to balance issues. I self really busy, because I’d be bored - I me I just hang up on him. Well, I’m actual- Enrichment is an adjunct to other thera- have quite a lot of chronic pain. I’m still have to stay busy. ly paying for him to stay at an inexpensive pies, not a replacement, where you stim- taking the tricyclic antidepressant desip- I do 100 sit-ups every night, which I de- motel, so he’s stabilized. And he’s realiz- ulate two senses at the same time, with a ramine that I’ve been on since 1980 - I spise, but the sudden burst of energy they ing that he needs to start changing what he lot of emphasis on smell and touch, and take 50 mgs, which is a starter dose, and provide helps me sleep. is doing. I’m an academic, but I’m also a you get improvements for sensory issues. I’ve never stopped taking it. I’ve heard too person out of the construction industry. In This can be done with simple, inexpen- many horror stories about when people that With depression and mental health is- construction, you’ve got to get things done sive household items like aromatherapy were stable went off their meds, like a bipo- sues often co-occurring with autism, - you have to fix things. It’s a very active and carpet samples and warm and cold lar medication, and it was a complete mess. could you speak to these issues and their approach. How can I get this man off the glasses, things like that. I want to work In my early 30s when I started the anti- impact in older adults. street, what do I need to do with him where on practical ways to treat sensory prob- depressants, it stopped the colitis I had. If I get him quality services that don’t cost lems. Like for example, if a kid is afraid you watch the movie, I was eating yogurt In talking with people at conferences, I that much? We’re doing quality, we’re not of the vacuum cleaner (this is something and Jell-O, and what the antidepressant did have been seeing depressed people in their putting him up in some slum full of rats, it I know works, even though it is not evi- is it turned the volume control down on my 50s and 60s because the company which has got to be quality. dence-based), you give the kid the vacu- fear responses and eased the panic attacks I they have been employed at all of their Another issue is medication polyphar- um cleaner and let him play with it, where was suffering from. It absolutely saved me, lives has shut down and they don’t know macy, where you are taking multiple med- he controls it. Then, instead of being I don’t think I’d be here today without it - I what to do next. ications to manage many different health afraid, he now loves the vacuum cleaner. would have lost all of my innards to colitis. I would suggest all adults, regardless of problems. Often times a person is on ten It is important for the kid to control the I developed Meniere’s disease and was their situation, start doing something new different drugs and maybe they need to be dreaded sound. losing my hearing about 15 years ago. I that is social. on three. It’s a big problem for Medicaid The problem with sensory issues is that was able to get the Meniere’s disease into For someone who is getting close to patients. Every time they throw a fit, they they are so variable. In order to do a study, remission - that’s when I learned how to re- retirement, I would recommend that they just throw another drug at it. All too often, instead of assigning the subject to treat- ally surf the internet and read the scientific start doing other things, so they have other no thought goes into medication management by autism, you need to assign based literature, so that I could educate myself. If things to do that they are already involved ment. Why did you start this drug, why are on what their primary sensitivities are: Do I wasn’t a trained scientist, I’d be in a lot of in by the time they retire. You need to re- you still on that drug, do you even know they have visual sensitivities, touch sensi- trouble. When I had the Meniere’s disease, place the job with something else. In my about the drug interactions? tivities, sound sensitivities? Otherwise you I had tinnitus which drove me nuts. I just generation, we had bowling leagues, golf just get a jumble of results that is like the had to find a solution to this and I knew the - those are wonderful activities for social- What are your hopes for future genera- average size dog. Let’s say we are going solution was going to be simple things. I izing. Find others that have shared interests tions of autistic individuals? to talk about dogs fitting on airplanes. Yes, learned this from reading patient message to participate with you. on the whole they do fit on airplanes, but boards. What I did was play a wave ma- For example, at the Kansas City airport, I want to see kids get out there and be how about the Great Dane? That is one ex- chine and some classical music really soft- they’ve got stores and boutiques there and everything they can be. I don’t want the ample of a dog that is an outlier - that is a ly, together at the same time. The tinnitus they have a huge model train exhibit. I bet person that should be doing the high-end subgroup out there that does not do well on tuned out because the brain can’t listen to you the person who’s built that is on the skilled trade they he loves, such as plumb- planes simply because of their size. three things at once. spectrum. I look at that and think, some- ing, electrical, heating, mechanics, and body’s having a good time, and he’s proba- instead, they are in the basement playing What is your advice to parents who ask I see a commonality in your approach- bly an older adult. video games, I don’t want that. These kids you about medications for their child? es to addressing problems with simple, Some people play video games online, are not going into the video game industry, low-tech methods. but I think it’s important that they get real that’s just not happening. A lot of parents and counselors are telling people-to-people interaction in the activi- If you have a child who is more moder- me their kids are so anxious that they can’t That’s right, I do it because I want to offer ties they choose. Doing things with your ate, some could live in a group home - he do anything. Use antidepressants to treat alternatives for our low-income families. I church or other house of worship is another could do a simple job. In other words, the the anxiety and if you get excitation, which have seen students where colored paper has option - they can hand out programs and attitude is to figure out what they CAN do. is very common, you cut the dose and then saved college careers. I saw another student give out food. Some of the more severely challenged it works fine. I have enough practical expe- where pink sunglasses helped her to get Also, there’s been some real problems in individuals with autism often have other rience where probably 30 people have told an A on her Economics quiz because the some older adults who refuse to try medi- heavy-duty medical problems on top of me they cut the dose of the medication and print on the PowerPoint projector no longer cation. I’ve talked to people who are very autism like epilepsy you can’t control, or then it worked fine. looked like it was “jiggling.” In this case, I anxious about going to their doctor. I’ve some other problem. But it’s still about Now, I’ve been on low doses of antide- don’t care if it is evidence-based or not - you talked some into trying one of the SSRI figuring out what they CAN do, with less pressants for over 30 years - it saved me. are talking about a $15 pair of sunglasses drugs at a low dose and it has really helped handicap mentality. What happens is that they put kids on a saving a student’s college education. improve their mental health situation. Where the parents really get stressed out drug like Prozac and then they experience I met a woman at a conference who had is when you have an individual whose sit- excitation as a side effect. Excitation keeps a head injury and mentioned my book There is broad sentiment to both fund and uation doesn’t allow them to do typical ac- coming up in the literature that I’ve been Temple Grandin’s Guide to Working with provide adult autism services. What do tivities like shopping, going to restaurants, reading. I’ll tell you what’s wrong - they Farm Animals because it has pastel paper you consider to be the most critical needs going to the movies - they can’t do with are giving too high a dose. Forget the label, in it. She looked at the yellow paper and and supportive services for older adults? their child. By the time I was five, we were sometimes you need to go lower than the exclaimed, “I can read, I can read, thank able to do normal activities like that. starter dose. I’ve seen this over and over you!” Something in her brain caused white People need decent health care, that’s num- again. Every time they do a research study, paper to make it impossible to read, and ber one. There are many individuals who see Temple Grandin on page 21 AUTISM SPECTRUM NEWS ~ SUMMER 2019 AutismSpectrumNews.org PAGE 13 AUTISM SPECTRUM NEWS DESK

Autism Science Foundation Statement on the Use of Medical Marijuana for People with Autism

By The Autism Science Foundation acea, and it is now marketed by companies as a treatment for everything from infection to neurodegenerative diseases. There is edical marijuana is now legal tremendous interest in CBD with over 100 in several states and the Dis- trials listed on the clinicaltrials.gov registry trict of Columbia. According addressing a wide range of clinical indica- Mto the National Institute on tions. Research centers conducting studies Drug Abuse, the term “medical marijua- are able to test their compounds for quality, na” means either the marijuana plant itself but because CBD is classified by the FDA or one its many extracts or compounds. as a botanical, government agencies have Use of the marijuana plant is not approved limited oversight regarding the quality of by the FDA for any medical purpose. How- CBD products sold online or in stores. ever, three marijuana-related compounds (nabilone, dronabinol and cannabidiol) are Why You Should be Concerned approved for specific indications. The growing interest in CBD has spread To date, there is limited research, and into the autism community. Anecdotal re- no evidence, on the potential short-term, ports tout improvements in anxiety, de- long-term or neurodevelopmental risks pression, and restlessness. In the absence and benefits of medical marijuana or its of results from well-designed and carefully related compounds in ASD. “high” including symptoms of euphoria ceutical-grade CBD, called Epidiolex, is a conducted studies there is no clinical guid- and memory loss. There are also effects purified, highly concentrated formulation ance on the use of cannabinoids in people What Scientists Know on coordination and perception. CBD is manufactured under strict safety and effec- with autism spectrum disorder. For exam- not psychoactive, although it does have tiveness standards. ple, there is limited information on the dose The marijuana plant contains over 100 effects in the brain. The two compounds The approval of CBD for rare forms schedule, adverse effects, target symptoms chemical compounds called cannabinoids. can be purchased and used independently of epilepsy has ignited interest in CBD or treatment duration. Of these, the compounds of greatest inter- of each other. The FDA recently approved and THC compounds for the treatment of The psychoactive form of medical mari- est are tetrahydrocannabinoid (THC), and a pharmaceutical grade of CBD as a treat- seizures in autism, as well as for the core juana, or THC, has also been used by cannabidiol (CBD). THC is a psychoac- ment for seizures in two rare, genetical- symptoms of ASD. The widespread use of tive compound, use of which leads to a ly-driven, forms of epilepsy. This pharma- CBD has generated claims that it is a pan- see Marijuana on page 19

Using Gene Editing, Neuroscientists Develop a New Model for Autism

By Anne Trafton Professor of Neuroscience, and an author MIT News Office of the paper. Huihui Zhou of the Shenzhen Institutes of Advanced Technology, Andy Peng y introducing a gene variant as- Xiang of Sun Yat-Sen University, and Shi- sociated with autism into mon- hua Yang of South China Agricultural Uni- keys, researchers hope to study versity are also senior authors of the study, Btreatment options for severe neu- which appears in the June 12 online edi- rodevelopmental disorders. tion of Nature. The paper’s lead authors are Using the genome-editing system CRIS- former MIT postdoc Yang Zhou, MIT re- PR, researchers at MIT and in China have search scientist Jitendra Sharma, Broad In- engineered macaque monkeys to express a stitute group leader Rogier Landman, and gene mutation linked to autism and other Qiong Ke of Sun Yat-Sen University. The neurodevelopmental disorders in humans. research team also includes Mriganka Sur, These monkeys show some behavioral traits the Paul and Lilah E. Newton Professor and brain connectivity patterns similar to in the Department of Brain and Cognitive those seen in humans with these conditions. Sciences and a member of MIT’s Picower Mouse studies of autism and other neu- Credit: Emw, Wikipedia Institute for Learning and Memory. rodevelopmental disorders have yielded drug candidates that have been tested in Structure of the Shank3 protein, a gene with Gene Variants clinical trials, but none of them have suc- a strong association to autism spectrum disorder. ceeded. Many pharmaceutical companies Scientists have identified hundreds of ge- have given up on testing such drugs be- “Our goal is to generate a model to help tions for autism spectrum disorder, and netic variants associated with autism spec- cause of the poor track record so far. us better understand the neural biologi- treatments developed in mice have so far trum disorder, many of which individually The new type of model, however, could cal mechanism of autism, and ultimately been disappointing. While the mouse re- confer only a small degree of risk. In this help scientists to develop better treatment to discover treatment options that will be search remains very important, we believe study, the researchers focused on one gene options for some neurodevelopmental much more translatable to humans,” says that primate genetic models will help us with a strong association, known as Shank3. disorders, says Guoping Feng, who is the Feng, who is also an institute member of to develop better medicines and possibly In addition to its link with autism, mutations James W. and Patricia Poitras Professor the Broad Institute of MIT and Harvard even gene therapies for some severe forms or deletions of Shank3 can also cause a re- of Neuroscience, a member of MIT’s Mc- and a senior scientist in the Broad’s Stan- of autism,” says Robert Desimone, the lated rare disorder called Phelan-McDermid Govern Institute for Brain Research, and ley Center for Psychiatric Research. director of MIT’s McGovern Institute for one of the senior authors of the study. “We urgently need new treatment op- Brain Research, the Doris and Don Berkey see New Model on page 23 PAGE 14 AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SUMMER 2019

NYU College of Dentistry Honors Marco Damiani, CEO of AHRC NYC, with Kriser Medal

By Dylan Watton are comfortable either shunning or making AHRC New York City token efforts to serve people with disabilities, when they should instead embrace the opportunity to broaden their clinical and ew York University’s College academic perspectives and impact on these of Dentistry honored Marco individuals. You can make a difference by Damiani, CEO of AHRC New disrupting the cycle of low expectations.” NYork City, with its David B. “Marco Damiani has led the way in pro- Kriser Medal, the college’s highest form of viding innovative services for the intellec- recognition at the school’s 2019 graduation tual and/or developmental disabilities com- ceremony. Damiani was awarded the med- munity,” said Charles N. Bertolami, DDS, al for “his extraordinary wisdom, counsel, DMedSc, Herman Robert Fox Dean of the and guidance throughout every phase of NYU College of Dentistry. “It has been a the planning and design of the NYU Den- privilege for all of us at NYU Dentistry to tistry Oral Health Center for People with collaborate with him on behalf of expanded Disabilities.” access to quality oral healthcare for people “It is truly a remarkable day when you with disabilities, and it is our privilege to receive an award for just doing your job!” honor him for distinguished contributions Damiani said in his remarks at the cere- to improved health and well-being for this mony recently. “When I first had the great large and especially vulnerable segment of fortune to meet with the leadership at the our population.” NYU College of Dentistry, I quickly saw Presenting Marco Damiani, CEO of AHRC New York City, with the Damiani was recognized along with and felt the passion, professionalism, com- David B. Kriser Medal, are, Dr. Stuart Hirsch, left, Vice Dean for Larry McReynolds, Executive Director of mitment, and vision for not just providing International Initiatives, and Dr. Charles N. Bertolami, right, Family Health Centers at NYU Langone, a world-class dental education, but also for Herman Robert Fox Dean, NYU College of Dentistry who was also instrumental in the creation playing a part in creating a better world – of the NYU Dentistry Oral Health Center in particular a better world for people who for People with Disabilities has a num- vision that underscores dignity, respect, for People with Disabilities. are perceived by society as ‘different.’” ber of innovations that set it apart. It is safety, and coordination of care. Damiani concluded his remarks by en- Throughout his career, Damiani has been equipped with two sedation suites staffed Damiani encouraged graduates to meet couraging the graduates to “always do steadfast in his commitment to finding in- by anesthesiologists, reducing the need for the ideals that helped build the oral health more than what is expected, especially for novative ways for people with intellectu- hospital referrals. It contains a multisen- center. “While a core commitment at NYU those not as fortunate as you. Difference is al and other developmental disabilities to sory room for those who may experience Dentistry is to provide the best possible ed- the only thing we all have in common. Dif- build full, healthy lives as defined by each overstimulation or anxiety during a den- ucation, there is more at work here: striving ference matters. Make a difference.” person with support from dedicated fami- tal visit. The center offers a full range of to disrupt the cycle of low expectations,” he lies, staff, and community partners. dental services provided by highly experi- said. “The low expectations of some pro- Dylan Watton is Communications Coor- The NYU Dentistry Oral Health Center enced and engaged faculty, and a service viders and even academic institutions that dinator at AHRC New York City.

A Practice Run for Air Travel

By Lynn Uhlfelder Berman ing them? How will the engine noise affect ment for AHRC NYC, has seen the impact AHRC New York City their child? the programs have on families, having co- United Captain Mike Neff met passen- ordinated seven Wings for Autism®/Wings gers as they waited at the gate. Once on for All® events. “It’s rewarding when you ritney Lopez would not let go of board, he reassured Tom Wu and his wife, see families immediately book that trip her tablet before going through Zoe Zhang, that their son Eason, two- and- they always wanted to,” John said. “They security at Newark Liberty Inter- a-half-years-old, who was crying, would be become an airline’s loyalist for life. They Bnational Airport as part of AHRC OK. Eason calmed down once his parents know this airline will support them.” New York City’s Wings for All® event. showed a video on a phone and sang along. While this was the first time many of Maria Aviles, Britney’s mother, expected “This was fantastic, uplifting, eye open- the young passengers had been on a plane, this would be as far as her daughter would ing and just a special experience,” Capt. they were all smiles as the flight attendants go during a dress rehearsal for air travel on Neff said. came around with snacks and beverages. Saturday, May 18. But with a little coax- ing and patience, Britney got through se- Rewarding for Families “We’re Going to Fly to Disney!” curity and smiled with her tablet in hand as she boarded the United Airlines jet with Wings for Autism®/Wings for All® also “Every customer deserves to enjoy and her family. Britney, a 16-year-old with au- gives airport, airline, TSA professionals be comfortable throughout their travel ex- tism spectrum disorder (ASD) who attends and other personnel the opportunity to ob- perience and working with The Arc helps AHRC Middle/High School, sat calmly on serve, interact and deliver their services us ensure that thousands of families across the plane tending to her tablet. Joanne Furstman with twins Teddy to people with disabilities in a structured, the country feel welcome when they travel and Nicky settled into their seats learning environment. with United Airlines,” Jill Kaplan, United’s “Just a Special Experience” “Partnerships like this can remove bar- President of New York and New Jersey. the plane. This was AHRC NYC’s first riers to travel for people with autism and “We are thrilled to bring this opportunity Nearly 30 families participated in Wings Wings for All® in New Jersey. New Jersey other developmental disabilities and their to Newark Liberty International Airport, for All®, hosted by AHRC NYC, The Arc, has the highest rate of autism with one in families,” said Marco Damiani, CEO of our New York/New Jersey hub.” United Airlines and the Transportation Se- 34 children; the national rate is one in 59. AHRC NYC. “This practice run makes Maria Aviles was thrilled with the ex- curity Administration. Many parents ad- Parents of young and adult children with a huge difference. We are empowering perience. “Britney did awesome, so we’re mitted being nervous, not sure what to ex- ASD and other developmental disabilities families, while educating and sensitizing going to fly to Disney! I’m excited,” she pect. But United’s employees went out of have numerous concerns about traveling airport personnel to the unique needs of said. “She liked it so much she didn’t want their way to ensure this would be a smooth on a plane. How will their child react to people with developmental disabilities and to get off the plane.” flight, even though the plane never left the the airport lights, crowds, and waiting in their families.” gate. United volunteers cheered young pas- line? Will they be comfortable with air- John E. Goodson, Assistant Director, Lynn Uhlfelder Berman is a PR/Media Re- sengers and their families as they boarded port security officers talking to or touch- Educational Services & Program Develop- lations Consultant for AHRC New York City. AUTISM SPECTRUM NEWS ~ SUMMER 2019 AutismSpectrumNews.org PAGE 15

Breaking Down the Barriers of Social Communication for Young Adults with Autism

By Braden Winslow, BA ed boundaries for conversation, and using and Samantha Feinman, MSEd, TSHH perspective-taking opportunities to draw New Frontiers in Learning attention to the response yielded by certain rhetoric or conversation topic. These approaches are only a small sample of strate- he transition from adolescence gies used by support networks to foster an to adulthood is an important and individual’s growth in their social skill set, transitory juncture in the lives of but any utilized tactic for most situations Tmodern young individuals. This should take care to be applied in a man- exciting and oftentimes anxiety-inducing ner that seeks to meet the student where time brings with it a host of challeng- they currently are skill-wise, as opposed es: increased independence, heightened to attempting to fit square pegs into round self-awareness, the taking on of more holes. It is more advantageous for support personal responsibilities, and a marked networks to try and develop a positive change in the expectations or practices of self-identity for the individuals being sup- social engagement. This last area, how- ported as the starting point from which they ever, potentially poses a greater threat to achieve the desired social growth. Hence, the development of positive self-identity this skill development should typically aim for young individuals with Autism Spec- to be ecologically valid in its approach, trum Disorders (ASD) and related learn- concerning “those behaviors that are nat- ing differences, as the pressure to navigate urally exhibited by socially accepted ado- changing and varied social contexts yields Braden Winslow, BA Samantha Feinman, MSEd, TSHH lescents or adults in a given social context” many opportunities for, colloquially, put- (Volkmar, Reichow, & McPartland, 2014, ting one’s foot in their mouth or engaging scaffolding for individuals to allow them to about only the topics that interest them, pg. 66). In so doing, support networks for in a manner unbecoming of expected so- find social success beyond the scope and dominating a conversation and not allow- ASD-related individuals strive to bolster cial practice. As Volkmar, Reichow, and relative safety of their social program. ing space for reciprocity, to apparent obliv- the development of social communication McPartland note, “research does suggest The effects of ASD-related social prag- iousness to the interest levels of the other in a way that doesn’t negate or erase the that having good social skills and adequate matic deficits can play out in several ways, conversationalist(s) involved in an interac- importance of the individuals’ self-identi- social support relate to better quality of life including lagging skills in social commu- tion. Breaking down these barriers of com- ty, but establishes certain patterns of social in adults with ASD” (2014, pg. 64). Thus, nication, social cognition, and the recogni- munication for young adults with ASD, behavior as existing closer to what we con- it is important to consider how support tion or understanding of social cues. These while still encouraging growth, requires a sider “typical” or “expected,” which systems can help supplement this crucial can manifest in equally disparate ways per- balance of pushing individuals outside of developmental opportunity by providing son-to-person, from an individual talking their comfort zones, establishing accept- see Communication on page 24 PAGE 16 AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SUMMER 2019

Older Adults on the Spectrum Face a Variety and Number of Major Challenges

By Karl Wittig, P.E. paired autistics who lack daily living Health and Healthcare Advisory Board Chair skills, but can also affect less-impaired in- Aspies For Social Success (AFSS) dividuals who are nevertheless dependent Probably the most significant difficul- on others because they were never able to ties of aging involve the general decline in find gainful employment; I have personal- health to which all of us are susceptible. As n spite of being fortunate enough to ly known a few with genius-level IQs for we get older, we generally develop a wider have avoided many of the challeng- whom this is the case. Such autistics can variety of health problems, many of which es presented by aging on the autism find themselves in dire circumstances as require specialized care or treatment. Giv- Ispectrum, I nevertheless feel that I middle-aged adults, even before they are en the state of healthcare in the U.S., ac- am in a position to write about these as an senior citizens. cess to needed services is becoming more older adult on the spectrum who recently All of this is further complicated by and more difficult for many. Whereas most became a senior citizen. I was already a the fact that, since there was virtually no health problems that affect younger adults middle-aged adult (age 44) at the time of public awareness of autism in their earlier are fairly routine and readily treated by pri- my initial diagnosis, and have since been lives, the vast majority of older adult au- mary-care physicians or in “walk-in” clin- involved in a number of areas concerning tistics were never even identified, let alone ics and similar establishments, older adults older adults and autism. In particular, I diagnosed. This is true of almost everyone are more susceptible to less-common prob- served on such initiatives as AFAA (Ad- who was an adult by 1994, when the au- lems that can only be treated by medical vancing Futures for Adults with Autism tism spectrum was expanded with the re- specialists with more extensive training – www.afaa-us.org) and AASET (Au- lease of DSM-IV in which the new diagno- and, especially nowadays, access to more tistic Adults and other Stakeholders En- ses of Asperger Syndrome and PDD-NOS advanced equipment and facilities. In the gaged Together – www.autistichealth.org were introduced. As such, it would be very past several years, I have needed no fewer , which deals with healthcare issues), in helpful to identify older adults, especially than three significant surgeries (prostate, addition to attending and facilitating sup- Karl Wittig, P.E. senior citizens, who are on the spectrum so sinus, and hernia – the first of these for a port groups for older adults over nearly a that their challenges can at last be properly potentially life-threatening condition), and decade. dismal. Beyond the well-known limitation addressed (that already being a “tall order” as such can speak to the reality of this sit- Aging presents numerous and varied that, in most states, benefits and services in our society). Because adult diagnosis of uation. Access to such providers and ser- challenges for many in contemporary so- for autistics end upon reaching adulthood ASD is generally very difficult, and be- vices is often much more restricted than it ciety, but for older adults on the autism (usually at age 21), many autistics are nev- comes even more so as a person gets older is for routine medical care. spectrum, these can be far greater and er able to live independently and depend (since they have either “aged out” of some All of this is greatly exacerbated by the more significant. They can involve finan- on caretakers for most if not all of their of their symptoms and behaviors, or else exploding complexity of our healthcare cial support, adequate housing, long-term lives. If these caretakers are parents or oth- developed more and better coping mech- provider and insurance system, which be- care, daily living assistance, healthcare er older adults, they will find themselves anisms to mitigate their challenges), this comes more and more difficult to navigate and health insurance, and finding viable without means of support or assistance presents a substantial problem for society with every passing day. First of all, a patient communities, among other things. In many with daily needs when their caregivers are as a whole which will need to somehow be instances, the outlook is nothing less than gone. This is certainly true for more-im- addressed. see Challenges on page 22

Housing from page 11 Aside from the social and moral im- peratives to create housing opportuni- and acceptance in a communal living en- ties, there are financial benefits to it as vironment. However, they offer little in well. Typically, the average cost to place the way of independence. These programs and care for someone in a group home is are generally reserved for individuals with approximately $90,000 to $140,000 per more significant needs. Supportive apart- year. Independent living programs with ments offer varying levels of indepen- on-site and community supports could dence, but very little opportunity to be a save tens of thousands of dollars per year part of a community. Newer housing mod- per person (Josh Kovner, Hartford Cou- els understand that in order for an individu- rant, 2018). This frees up resources in oral to reach their fullest potential, they must der to service more people for the same incorporate community and independence cost rather than operating at a deficit, into one program. or worse, leaving many sitting on waiting lists and causing economic hardship Disabled people need more invested in on families. In a report issued by Autism their education, housing, job training, Speaks, it costs families an average of transportation, assistive technology, and $60,000 per year to care for a child with independent-living facilities. Governments Autism. The majority of this cost is ac- earn back this investment - and more - by counted for by the lost wage potential making people with disabilities economi- involved in providing care for the child cally productive citizens. (Autism Speaks, 2017). - Jesse Ventura With the clear economic, social and so- cietal benefits of new and expanded hous- There are programs opening up through- ing communities for adults with Autism, out the country to address this need. Pro- why does there continue to be such a gap grams in California such as The Mission in need versus availability? While some Project, Camphill, Sweetwater Spectrum of those theories have been discussed in and Legacy Homes are innovative mod- this article, it remains clear that there are els that seek to provide a person-centered many factors that converge to create the alternative to typical housing. In other current crisis we in which we currently states, similar ventures are shaping the find ourselves. And in order to meet the face of housing. In Arizona, Florida, Colo- growing demands of a growing popula- rado, District of Columbia, Utah and New tion of adults with Autism, we, as a soci- York, programs are also opening up. Many ety must step up our game while we em- of these are already full, while others are brace and support new housing initiatives still in the development process. The com- that strive to create a more independent, mon goal is to allow adults with Autism to self-determined and integrative life live full lives, while integrating into their communities. see Housing on page 22 AUTISM SPECTRUM NEWS ~ SUMMER 2019 AutismSpectrumNews.org PAGE 17

Why Autism Parents Say: “I Can Never Die”

By Susan Senator the future. Reuters columnist Mark Miller on video may not end in conviction. One Author, Journalist, and Public Speaker interviewed MIT Sloan School researcher parent in Massachusetts, Paul Joyce, has the and author Paul Osterman about the care- evidence of his son being repeatedly beaten, giving workforce shortage. Miller quotes on camera, and yet those responsible, even he caregiving workforce shortage Osterman’s research: “in 2030 there will be though found guilty, were given 18 months’ is and will be a crisis for so many a national shortage of 151,000 paid direct probation and “ordered not to work in this Americans. “I can never die.” care workers and 3.8 million unpaid fam- field again,” according to Joyce. The other TThis is the rallying call of au- ily caregivers. By 2040, the shortfall will perpetrator was simply ordered to write the tism parents everywhere. Why do we feel be much larger: 355,000 paid workers, and Joyces a letter of apology. that way? Because many autistic adults the family and friends shortfall will be a It is no wonder that the Joyces and a sim- live with their parents—85%, according shocking 11 million.” This severe deficit of ilar family, the Chans, have come togeth- to autism researcher Peter Gerhardt. Au- care providers is because so many needy er with many Massachusetts legislators to tism most often comes with severe social different populations are emerging at once. push for “Nicky and Dana’s Law,” which deficits—a sometimes profound difficulty Another factor: new draconian immigra- aims to create a registry of abusers, so that navigating the ways of people, the gray ar- tion policies that reduce the potential work- they may not be hired again in the field. eas, yet so many do not get adequate care force. And finally: the workers are gener- Despite strong legislative support, the bill outside of what their parents can give. The ally paid minimum wage or less, despite failed last session but is even more strong- parents are all they’ve got, the last protec- having incredibly difficult jobs. The same ly supported now. tion in a very demanding, complex world. Reuters piece Osterman says, “Caregivers Parents like me are desperate to see laws Even autistic adults not living with par- earn very low wages - median income for like Nicky and Dana’s Law passed, at very ents, with lots of supports, face tremendous CNAs in 2015 was $20,000, and home care least. But what can we do to prevent the difficulties. Three years ago, my own adult aides earned a median of $15,000, accord- abuse in the first place? I am a vigilant autistic son came home from his supported Susan Senator ing to Census data.” and very involved parent in my son’s life. living and day programs for a visit, with a There are often problems of oversight I have made sure that all of his staff know fist-sized bruise in the middle of his chest. disabilities are sexually assaulted at a rate and staff shortages in residential settings him and me, and I’ve tried to connect with He has profound communication issues, that’s seven times that of people without and day programs. Again, funding is very them and give them presents at the holi- so we could not learn how this happened. disabilities.” In the same story, one phy- thin, and so the ratios of caregiver or job days, and also lots of support. I often take An X-ray revealed one set of broken ribs, sician in New York City “has a practice coach to individuals can be inadequate. my son home for weekends to give more in addition to an older, healed injury. My just with people with intellectual disabil- Poor supervision can lead to bad treatment respite. But still, my son was injured. More son, unfortunately, is one of many devel- ities. [This doctor estimates that] at least or neglect. than once. opmentally delayed adults who has been half the women that she sees have been the What are parents like me to do to protect My idea? Aside from funding caregiv- abused by someone in his community. victims of sexual assault.” our disabled loved ones? How do we learn ing jobs much better and dignifying the Abuse by caregivers is rampant in the dis- Let’s face it: The world is just not ready to trust caregivers if there is so much abuse profession with licensing and training— ability community. Across the country, ac- for the droves of people who need—or out there? Often hidden cameras are not al- cording to NPR, “People with intellectual who will need—intensive personal care in lowed, and even if they are, abuse captured see Parents on page 26 PAGE 18 AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SUMMER 2019

Supporting Pioneers: Building Better Networks for Adults Aging with Autism

By Caitlin E. Coyle, PhD ment despite high educational attainment; and Danielle Waldron, MS one woman with autism expressed, “I’ve Gerontology Institute been terrified of interviews. I’ve applied University of Massachusetts Boston a couple places and oh my God, stress.” She decided to remain in her current job, which was outside the scope of her grad- lthough traditionally under- uate studies because it “felt more doable stood as a childhood condition, than meeting all the new people and stuff” autism is a lifelong disorder at a new job. Given these consequences of Athat presents in both children social isolation, it was not surprising that and adults. Many of the children with this the importance of nonprofit organizations, disorder who were born during the last service providers and other structured so- century and who are now reaching mid- cial environments was revealed in these and later-life did not receive formal diag- interviews. An older woman with autism noses of autism. Further, increases in hu- shared that she was moving closer to her man longevity and the aging of the largest temple, stating, “I didn’t find where I was birth cohort (born between 1946-1964) in living before very supportive. And I knew, our nation’s history suggest that although I knew, I just knew there is a smaller com- prevalence rates of autism remain around munity at the temple, a smaller temple that 1% of the population, the sheer numbers of I feel like I would get more support and these adults stands to increase dramatical- have more enjoyment with.” ly in coming years. Caitlin E. Coyle, PhD Danielle Waldron, MS For adults with autism, getting older These adults on the spectrum who live means an accumulation of limited social much or all of their lives without diagno- We interviewed 30 adults over age 50 Additionally, challenges with relating to networks and the aging of their own fam- ses, often struggle to develop their person- living with autism. From these life-course others and communication barriers result- ily system (i.e. frailty or death of parents al identities. Due to their difficulties with interviews, we uncovered significant bar- ed in varied work histories leaving these and siblings), housing instability, and fi- communication and relationship develop- riers to successful aging that were related older people with financial consequences. nancial insecurity due to varied work his- ment, they work tirelessly to manage their to social isolation. Seventy-three percent An adult with autism shared that, “at one tories. Although many adults with autism disorder in order to assemble lives that in- were unmarried, 50% lived alone, and we point, I lost my job and she lost her job. We live independently, many live without clude stable employment, intimate social heard from many that friendships were just experienced this hideous, you know, strong social relationships and persons on relationships and families. As one adult ag- few. As one adult with autism explained, “I financial insecurity.” Individuals aging whom they can rely for support. Thus, a ing with autism describes (his or her) life don’t know if I have close friends. I wish with autism also had regrets about their network of community organizations that without an autism diagnosis, “...something I did. I just have a hard time with crowds contributions to society, at least in part, at- provide information about available basic was missing: Not knowing how to and I don’t really know how to socialize. I tributable to issues with socialization. This think about and appreciate ourselves.” don’t really know how to make friends.” sometimes manifested in underemploy- see Building on page 24

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Challenges from page 16 to maintain regular routines. If they can be (I once attended a workshop on this issue older autistic population is the availabili- successfully instructed in maintaining good for which the room was filled to capacity). ty of support and social groups. The idea having an unusual condition must be re- health habits, there is a good chance that One result of this is that excessive weight of a peer-run support group for seniors ferred to the appropriate specialist. This they will actually do so, as long as these and obesity are very common in the autism on the autism spectrum was proposed in does not simply mean the correct medical are adequately taught (along with reasons community. When bad health habits cannot 2010 as an initiative of the Daniel Jordan discipline (cardiology, gastroenterology, for their significance) and compliance be changed, they should at least be man- Fiddle Foundation for adult autism (www. urology, etc.), but the precise specialty consistently encouraged and subsequent- aged such that the least harm can result. djfiddlefoundation.org) and instituted by within that discipline; in modern medicine, ly ascertained. In particular, following the In the case of nutrition, this can be done GRASP (www.grasp.org). It started out this often is so specialized that identifying instructions of medical providers precise- by working within limitations to make the as a group for 60+ adults facilitated by an the appropriate provider to which a patient ly, which is essential to good outcomes in best choices possible, and perhaps use sup- older person on the spectrum, but the min- should be referred is not always trivial. To many situations, is something that many plements to compensate for deficiencies in imum age was soon lowered to 50 because make matters worse, the health insurance autistics will have little or no difficulty do- essential nutrients. of very low attendance (few individuals in industry has created a byzantine system of ing. The same holds for the management of the older age group had been diagnosed or provider networks so complicated that it can medications: so long as they are explicitly The Need for Community identified) and to be consistent with the be very difficult to determine if a provider told which ones to take, at what times, and AARP age requirement. More recently, is currently in your health plan. All of this in what doses (along with explanations of As do most older adults, autistics have Aspies For Social Success (AFSS – www. can be daunting for just about anybody, but their purpose and importance, when appro- need for and greatly benefit from being part nyautismcommunity.org) in New York has it is nothing less than a nightmare for autis- priate), many autistics can be counted on to of a community. Unfortunately, they often also offered an older adult group (with no tics who usually require some semblance of do so, and quite diligently. have greater difficulty relating to contem- formal age limit). I strongly believe that systemic order, along with specific informa- At the same time, some aspects of health poraries than do more typical adults. For such groups, both support and social, and tion, and the current system often provides can often be more problematic for autis- these individuals, specialized interests and either professionally facilitated or peer- neither. Clearly, this is a substantial problem tics, especially when they involve chang- abilities can be of help – perhaps an unusu- run, need to be made more widely avail- even for autistics fortunate enough to have es in long-held habits (which autistics al talent is of value to a wider adult commu- able because they provide perhaps the only adequate health coverage (I purchase insur- famously have great difficulty with). One nity (e.g., electrical or mechanical repairs, opportunities for older adult autistics to ance from my state healthcare marketplace); such case is with nutrition. Autistics often computer help, categorizing items, prepar- share about their challenges with others for those not so lucky, the situation is dra- have poor eating habits for any number ing tax returns, etc.), in which they will who have faced similar ones as well as so- matically worse. Most autistics will need of reasons; in particular, many have very thereby be more appreciated. An “obses- cialize with those who perceive and pro- considerable assistance with this problem. selective (as is the case with me) or oth- sive” interest may also serve a similar pur- cess the world in a manner similar to their As for maintaining good health, there are erwise peculiar food preferences which pose, if they are introduced to other adults own. I have both attended and helped orga- areas where common autistic traits may ac- they will not deviate from, or at least will that share that interest. Needless to say, nize and facilitate these groups and, as with tually be used to good advantage. In par- resist any attempts to change. While this these interests also serve as activities and all other support and social groups, found ticular, autistics are often very diligent at may not be the case for most autistics, it hobbies for autistic adults to be engaged in. following instructions precisely and like is more common than most people realize One thing that may significantly help the see Challenges on page 22 AUTISM SPECTRUM NEWS ~ SUMMER 2019 AutismSpectrumNews.org PAGE 19

Five Tips on How to Best Support a Sibling of a Child with ASD

By Marlene Cuevas, LCSW and explain they are not responsible for and Nicole Hadley, CCLS the disorder. The Center for Autism and Neurodevelopmental Disorders 4. Create Open Communication: Infor- UCI School of Medicine mation is the key component in supporting siblings and helping them cope with having a brother or sister with an eing the sibling of a child with ASD diagnosis. Incomplete informa- autism spectrum disorder (ASD) tion may create fantasies that are often and other medical or develop- worse than the real situation. As parents Bmental diagnoses can have its are coping, siblings are too. Parents and challenges, but it can also provide oppor- other caregivers should acknowledge tunities in building resiliency and compas- that siblings could have the same con- sion towards family members and others. cerns and worries as them. Limiting The Center for Autism & Neurodevelop- the amount of information provided mental Disorders had the unique opportu- will only lead to more misconceptions. nity to facilitate a 6-week sibling support Communicate information about the di- series and have found both positive and agnosis as much as possible. negative impacts are shared among the siblings of children diagnosed with ASD. 5. Provide Emotional Support and On the positive side, when siblings have Coping Techniques: Siblings may ex- the opportunity to form stronger connec- their children to talk about their con- can have on behaviors for the child with perience an array of emotions. Caregiv- tions and improve relationships with their cerns, validate their emotions and find the diagnosis, as well as the impact the ers and parents should focus on help- parents or caregivers, they demonstrate healthy ways to express them, like sibling may experience. ing siblings express these emotions in increased empathy, an awareness of dif- connecting with others who share in a healthy manner. For example, stress ferences and resiliency. Alternately, some similar experiences. It is important to 3. Understand that Different Age balls, yoga, talk therapy, support groups of the obstacles siblings shared were frus- remind children that they are not alone Groups Have Different Needs: As and approaches that support each sib- tration, embarrassment, isolation, and lack and that every family is confronted children develop, their understanding ling’s unique perspectives, experiences of attention from parents to the siblings’ with life’s challenges. and needs will change. For example, and needs. needs. Here are five tips for parents on preschoolers are going to be more ob- some approaches that can support a sibling 2. Explain the Diagnosis: As parents, it servant of how the diagnosis will im- Parents who had their children partici- of a child with ASD: is important to assess what your child mediately affect them. Since some chil- pate in The Center’s 6-week sibling sup- understands about his or her sibling’s dren can feel levels of guilt thinking port series felt it was an overall positive 1. Connect in Shared Language: We diagnosis. Clarify misconceptions and they caused the sibling’s autism, it is encourage parents to make time with explain what ASD is, the impacts ASD beneficial to acknowledge their fears see Sibling on page 24

Marijuana from page 13 doctor and ask about potential benefits and challenging. We urge the DEA to move http://extras.denverpost.com/stateofhope/ risks based on your own or your child’s medical marijuana from a Schedule I to index.html families in the autism community. When medical history with a full understanding a Schedule II compound to expand future Colorado legalized recreational marijua- of both evidence-based and non-evidence research possibilities. The Autism Sci- Lihi Bar-Lev Schleider, et al. (2019). na there were reports of families moving based treatments for ASD. Parents and au- ence Foundation has provided funds to Real life Experience of Medical Can- there to obtain it legally. There are many tistic adults should carefully consider the study the biological mechanisms of can- nabis Treatment in Autism: Analysis of known adverse effects of THC, such as costs, risks and benefits of a drug that has nabinoids in rodent models of ASD and Safety and Efficacy. nature.com/scientif- increased anxiety, psychotic thinking and not been proven effective or safe. we look forward to continued research in ic reports. cyclic vomiting. Because of its psychoac- the pre-clinical and clinical domains to tive properties parents should be very cau- What Should Be Done inform the debate on the risks and bene- pediatrics.aappublications.org/con- tious about giving THC to their children. It in the Future of Research fits of these compounds. tent/135/3/584 should not be smoked, as there is evidence that smoking marijuana is linked to lung Autism Science Foundation strongly Readings of Interest https://www.taxpolicycenter.org/taxvox/ cancer. Some parents have reported giving concurs with the American Academy of high-hopes-and-altered-states-choices- their children THC-containing “edibles”. Pediatrics and urges further study on the https://www.drugabuse.gov/publications/ marijuana-and-tax-revenue However, THC may have serious side ef- safety and efficacy of medical marijuana drugfacts/marijuana-medicine fects in children and should be ingested in ASD and other conditions of child- This article is reprinted with permission. only under strict medical supervision. hood. While the FDA has eased some https://www.fda.gov/news-events/press-an- You may view the original article at https:// Before you decide to embark on any new regulatory requirements to study CBD, nouncements/fda-approves-first-drug-com- autismsciencefoundation.org/what-is-au- drug treatment for yourself or your child, the legality of CBD is still in question prised-active-ingredient-derived-marijua- tism/statement-on-use-of-medical-mari- we highly recommend you talk to your making human-based research highly na-treat-rare-severe-forms juana-for-people-with-autism/. PAGE 20 AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SUMMER 2019

Supporting from page 10 ly-qualified team of professionals working at Melmark PA. For more information, vis- Mukaetova-Ladinska, E.B., & Stu- collaboratively to ensure that exemplary it http://www.melmark.org. art-Hamilton, I. (2015). Adults with The older adult’s individual support care is being provided at all times. This, in Autism Spectrum Disorder (ASD): plan needs to be robust and completely in- addition to well-trained direct support staff References Service user perspective on ageing dividualized with achievable goals built in working with individuals, will help ensure transition(s). American Journal of Au- that support access to the local communi- the greatest outcomes for the older adults Baker, J. C., Fairchild, K. M., & Seefeldt, tism, 2(1): 1-11. ty, skill acquisition and maintenance, and can be achieved. D. A. (2015). Behavioral gerontology: Re- comprehensive goals to address commu- search and clinical considerations. In Clin- Parsons, M. B., Rollyson, J. H., & Reid, D. nication skills and mobility, if and when Karen Parenti, MS, PsyD, is Executive ical and Organizational Applications of H. (2012). Evidence-based staff training: A needed. Director and Maggie Haag, MEd., BCBA, Applied Behavior Analysis (pp. 425-450). guide for practitioners. Behavior analysis It is equally as important to have a high- LSW, is Senior Director of Adult Services Academic Press. in practice, 5(2), 2-11.

Autism Spectrum News 2019-2020 Editorial Calendar

Fall 2019 Issue: Spring 2020 Issue: “Autism and Community Engagement” “Supporting Girls and Women with Autism” Deadline: September 5, 2019 Deadline: March 5, 2020

Winter 2020 Issue: Summer 2020 Issue: “Neurodiversity and Autism” “Siblings and Autism” Deadline: December 3, 2019 Deadline: June 4, 2020

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Golden Years from page 4 walk too fast.” be very helpful if the ASD senior can ods of persuading them to take their meds afford this expense. If not, friends and that have been successful, and an emergen- • Keep in mind that their misbehavior is Proactive plans are crucial at this turn of family may volunteer to help.) cy medical call list. If the senior with ASD seldom intentional. The playing field events. Remind the senior with ASD of the has repetitive verbal arguments, phrases, or of life is changing for them. Assume good points of their appearance. This can • Will I be comfortable in what I’m other repetitive verbal behaviors, list ways the best unless you are certain that a be a good way to encourage grooming and choosing to wear? to respond to these situations. Most import- behavior or mannerism is intentionally hygiene (e.g., “My body can change, but ant on your training list is explaining ways negative. I can still dress well”). Encourage regular Taking medications is very time-specif- to calm and soothe this individual. exercise to help them stay as fit as possi- ic, as some should be taken before eating, The most dramatic change that aging • We must change our resources for help- ble. This is where programs for typical se- some during meals, and some afterwards. brings about is a greater need to access ing them cope. Have suggestions for niors may work just fine, such as YMCA Seniors can use segmented pill dispensers medical care. This involves everything solutions ready before addressing prob- water fitness, Tai chi programs, yoga, and that not only delineate the day of the week, from routine tests to management of chron- lems with the person who has an ASD. community center exercise events. Contact but the time of day, such as a.m. and p.m. ic medical needs to sudden trips to emer- Be sure to stay upbeat in your discus- your state office of aging for more infor- For our seniors, using different colored pill gency care caused by falls or deterioration sions and dealings with the senior you mation. This can also be a time of opportu- dispensers before, during and after eating of body functions. Being proactive with the are helping. nity for the caregivers to take a small break may be helpful. In some cases, it may be ASD senior’s health care providers will be at predictable intervals. necessary to have a separate pill contain- immensely helpful. The senior with autism Individuals with an ASD often experi- Another great proactive plan is to make er cluster that is given out each day. Vera may still have problems with waiting their ence old age differently than non-spec- a morning schedule or “to do list” for the Bradley makes a pill container set that can turn for service and accurately explaining trum seniors. Despite gradual transitions, ASD senior. Always remember the “not be kept inside a small, zipped bag. Using their aches, pains, and concerns. Informing their realization of body changes may about me, without me” philosophy when colored tape or indelible markers can in- those personnel working in intake posi- be very sudden. Although they are at an attempting such a schedule or list. No one dicate which meal and whether before, tions at places that will be regularly visit- older age, they may still be “stuck” in the wants to be forced to do things that they during, or after eating that meal. For those ed about their possible stressors may help. interests and behaviors of a younger era don’t like. Therefore, your positive and who will accept the accommodation, there Also, ask for an estimate of how long the in their lives, such as liking and even ob- creative skills will be essential in working are now pill dispenser wristbands that can wait will be. This will help you to advise sessing on music, movies, games, dress of with them to develop a daily list and then be used as well. the senior in question about how to cope past decades (e.g., disco music or hippie add in items for appointments or special Diminished hearing and sight, increasing with the wait. clothing). events. A good place to begin is with break- aches and pains, and feeling more isolated Visual supports can help with explaining It is common for seniors with ASD to fast. Choose something they like to do or can lead to a grumpy disposition. This can areas and levels of pain, if necessary. When have difficulty explaining states of health. eat in the morning and make that a part of be seen in critical comments about those accessing emergency care, keep a sheet of For instance, they may not tell you they the checklist. Depending on their living sit- with whom they interact, being very picky information about the senior in a handy are experiencing stiff joints, leg cramps, or uation, other items may have to take place about food and entertainment, and negative location, such as the refrigerator door, heart arrhythmia. Or they may not realize before breakfast, such as grooming, medi- facial expressions. Some seniors on the au- your wallet, or by the telephone. This can they are losing their hearing, until one day cations, and checking the checklist. For ex- tism spectrum can become very paranoid, include keys to communicating with that they panic about it. This can also be true ample, if you live in a communal setting, suddenly distrusting those who help and/or person, and understanding the difference of diminishing sight. These phenomena can you may not be able to go to breakfast in are friends with them. Informing others of in their expressive language. Understand- lead to disagreements or fear. Suddenly, your pajamas. In grooming, it may help to their health challenges and using distrac- ing the impact of other phenomena such they are making proclamations or accusa- select an outfit the late afternoon before tion techniques may help with this. as claustrophobia or hospital psychosis, or tions, such as: their next morning routine. This is a great Prepare a “training list” to share with “sundowners” syndrome will be important. awareness check time: auxiliary helpers. Likes and dislikes, daily Hospital Psychosis occurs when some- • “The TV isn’t loud enough.” routines, and health issues are important to one enters a structured living situation such • What is the weather forecast? include on this list. Entertainment prefer- as hospitalization or a skilled care facility. • “You aren’t using 100-watt bulbs in the ences and areas of interest should be fol- They suddenly may become disoriented lamps.” • Am I doing something in the morning that lowed by cautions about what they don’t and paranoid, often blaming their primary will require activity-specific clothing? like in these areas. For routines, include ex- caretaker or care staff for their confine- • “Stop taking me to doctors I don’t need ercise, diet, and social routines. Be sure to ment, and distrusting the people upon to see.” • Is what I want to wear clean (beware of be specific as to what they like and dislike whom they rely for care. They may engage spots, as they often don’t see them) and in each area. Health issues to be covered can • “I don’t walk slowly, the rest of you pressed? (Using a laundry service can be a list of medications and allergies, meth- see Golden Years on page 22 AUTISM SPECTRUM NEWS ~ SUMMER 2019 AutismSpectrumNews.org PAGE 21

How Do I Fund My Child’s Applied Behavior Analysis?

By Marci Wheeler, MSW and Equity Act (MHPAEA) must cover ABA Dr. Cathy Pratt, BCBA-D and autism treatment. Coverage cannot be Indiana Resource Center for Autism limited unless the same limits apply to sub- Indiana University – Bloomington stantially ALL medical surgical conditions in the same category of service (inpatient, outpatient). Some self-insured plans are ex- our son/daughter has just been empt from MHPAEA and would not have to medically diagnosed with cover autism or ABA. Any self-insured plan an autism spectrum disorder that does NOT offer ANY mental health ser- Y(ASD) by their primary care vices does not have to cover autism or ABA. physician or by a psychologist. It has been If you have an Affordable Care Act Plan recommended that you pursue Applied (ACA) purchased from the federally fa- Behavior Analysis (ABA) therapy. ABA cilitated Indiana ACA marketplace, ABA is endorsed by the American Academy of is included in the “Essential Health Bene- Pediatrics as an evidence-based practice. fits” package and required to be covered in The challenge then becomes locating a Marketplace plans because they must fol- provider and funding for the program. A low the Indiana Autism Mandate: https:// list of providers can be found on our web- www.healthcare.gov/get-coverage/. site at https://www.iidc.indiana.edu/pages/ Beginning in 2017, ALL federal employ- where-and-how-to-find-an-aba-provider- ee health care plans must cover medically or-center. ABA programs should guide treatment program. There are a variety states Department of Insurance and ask if necessary autism treatment. This includes you on identifying and accessing funding of medical coverage programs available that state has an insurance mandate or par- ABA therapy and other therapies (e.g., sources. This article is written so that you to families. These may include employ- ity law for autism. Your insurance covers speech therapy, physical therapy) gener- can better understand your options. Do not er-based health coverage, private purchase autism treatments if it is fully funded and ally accepted by the medical community be overwhelmed. of health insurance, and state and federally is issued in Indiana or another state that has and written into the treatment plan by the subsidized programs. an autism insurance mandate. child’s treating physician. Insurance Coverage If you have private employer based insur- If your employer-based insurance is ance, check to see if ABA is covered. You self-funded (also referred to as self-in- Medicaid Indiana is fortunate to have a strong au- can determine if your plan is covered by In- sured), the policy is regulated under federal tism insurance mandate. Understanding diana’s or another state’s autism insurance law and exempt from any state regulation. All Medicaid Health Plans cover med- if and how you are covered under your mandate by checking with your company’s Your employer-based self-funded plan ically necessary ABA. Medicaid Health insurance plan should be the first step. Human Resources Department. Ask if your may still voluntarily cover autism, so you Plans must be full coverage plans and in- Your child is eligible to be covered via plan is fully funded and if it was issued in should ask if they do. Self-funded compa- clude: Medicaid Disability, also referred insurance, because ABA is considered a Indiana or another state. If your insurance nies that are required to comply with the medically necessary part of your child’s was issued in another state, check with that federal Mental Health Parity and Addiction see Fund on page 25

Temple Grandin from page 12 It: A Personal Look at Autism & Asperg- (gaming disorder is now an ICD 11 des- going to go nowhere.” Can you believe er ’s, is one way to learn. ignated disorder) and one that will have a they are still saying things like that? What do you say to parents in that type For older kids, parents need to be moti- child that can get out and have a life with There is a tendency for parents to try all of situation? vating them and figuring out what the in- a career, because they were motivated by types of crazy alternative treatments. For dividual CAN do. Let’s say it’s a person the parents. This is what I’m seeing. Then example, people trying hyperbaric oxygen It’s a very difficult situation. Those parents with more severe challenges. Well, parents another day I’m down in the maintenance chamber therapy and finding out it doesn’t really need some respite, they need some are often too quick to dress them. Instead, shop at a meat packing plant and they can’t work. Well, I never promoted that because help. I’m thinking of a case in Texas where take the time to teach them how to dress hire people for skilled trades right now be- I never could find even anecdotally that it every month a church put on this big respite themselves – motivate! If the child is good cause nobody introduced these skills to dif- worked when I asked the family a lot of function to give parents a short break from at math and is bored with “baby” math, then ferent kids in their school. There is a gigan- questions. It’s the same with early inter- child care. One family had a very severe give them college math books if they can do tic shortage of workers for skilled trades. vention, it should be started as soon as pos- child with autism who also had many other it. If he has art skills, enhance those skills. I like what Stephen Hawking, the fa- sible. Parents need to stick with the science major medical issues. They brought their I’ve also seen way too many kids ending mous astrophysicist, has to say about dis- from the very beginning. child to this church respite function and up in the basement and going nowhere. What ability: “Concentrate on things your dis- I talk to low-income families in the the parents just went out in their air-condi- makes me crazy is one smart kid who ends ability doesn’t prevent you from doing southeast where there are little to no ser- tioned car, laid the seat back, and played the up in the basement playing video games, well….” He could do math in his head - vices. I tell them to get the grandmothers stereo for four hours. They were complete- and another one just like him has a cool job about the only thing he could do well, and from your church and suggest they read ly fried because they couldn’t get any sleep, out in Silicon Valley. One day I’ll be visit- that’s what he did. There is a tendency to these books. Start working with this child they couldn’t do normal stuff like go out to ing a big name Silicon Valley company, and develop a handicapped mentality. I see too and you start working with them now, be- dinner, go to church, just normal stuff. It the next day I’m at an autism meeting and a many parents who have a smart kid and cause the worst thing you can do is to do can be very stressful being a parent and re- mom comes up to me and she’ll say, “He’s they don’t push them enough. nothing. Don’t wait. You’ve already respite opportunities are very important. 12 and I can’t get him out of the basement” The other thing to tell parents who have ceived a diagnosis - it’s called “He doesn’t or another mom will come up and say, “I a younger child who isn’t talking is that speak, and his behavior is a mess.” Start What advice would you give to parents pushed my child, I got him out doing things, children can look very severe when they working on him now. of children with autism? he’s got a job and he’s loving it!” are little - I was one of those kids. So, you There are two kinds of moms, there’s do your early intervention, and then you’ll The viewpoints expressed in this article We’ve got to work on early intervention. If really a fork in the road for the fully ver- know after a few years what his level is. do not reflect the opinion of the Autism you can’t get services, then make your own bal adult with autism: One that will have a I’m having lots of parents still coming up Spectrum News Editorial Board or the early intervention. My book, The Way I See child in the basement playing video games and telling me, “Well, the doctor says he’s Publisher, Mental Health News Education. PAGE 22 AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SUMMER 2019

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Housing from page 16 Master’s in Early Childhood Education in Person-Centered Communities for Adults O’Byrne, Mary E. Esq. and Stephen W. Dale, 2008 from Touro College. Her work has with Autism” www.eParent.com, 2018 Stephen W. Esq., 2019 “Getting Creative: and living environment for our children. focused on improving the lives of children Models for Filling the Housing Gap, 2019 Because, as stated by Mahatma Gandhi, and families dealing with Autism. Mandy’s CDC Data and Statistics, www.cdc.gov, “The true measure of any society can be professional career includes direct service 2018 Jesse Ventura. (n.d.). AZQuotes.com. Re- found in how it treats its most vulnerable to clients both in mental health facilities trieved May 08, 2019, from AZQuotes. members.” and in their homes; community education Reimann, Matt “Willowbrook, the institu- com Web site: https://www.azquotes.com/ and advocacy and teaching original curric- tion that shocked a nation into changing its quote/302218 About the Author ula to psychiatry residents. She has a pri- laws”, June, 2017 vate practice in Long Island, NY and is the Kovner, Josh. “Bill Would Encourage Mandy H. Breslow, LCSW, MS Ed., is founder of a developing housing initiative Johns Hopkins University Bloomberg Housing Options for Group Home Cli- Founder and President of Indie Living, Inc. called Indie Living. Mandy lives on Long School of Public Health. (2018, April ents”. Hartford Courant, 2018 She is also an Independent Special Educa- Island with her husband and has two teen- 26). U.S. autism rate up 15 percent over tion Consultant and Counselor. age sons with Autism. two-year period: Researchers say ra- Autism Speaks, www.Autismspeaks.org Mandy H. Breslow, LCSW, MS Ed., is cial and ethnic disparities are narrow- a social worker in practice for 22 years. References ing. ScienceDaily. Retrieved May 9, Mahatma Gandhi. (n.d.). AZQuotes.com. Re- She earned her Master’s in Social Work 2019 from www.sciencedaily.com/releas- trieved May 12, 2019, from AZQuotes.com Web in 1997 from Adelphi University and her Autuori, Donna M., “Building Supportive, es/2018/04/180426141604.htm site: https://www.azquotes.com/quote/877037

Golden Years from page 20 in making the aging experience optimal. Finding effective “relief valves” will be This article is reprinted with permission. Whether a paid or volunteer non-fami- important, whether that is physical, spir- You may view the original article, at www. in nonsensical arguments when asked to ly member or someone who is related by itual, or intellectual. Knitting, reading, iidc.indiana.edu/pages/autism-after-65. take medicine or agree to tests. Escape of- genetics or love, you will need knowledge drawing or other art endeavors, computer ten becomes their top priority. If the senior and encouragement as you take this import- activities such as Caring Bridge (for those Sources of Information with ASD is showing signs of this behav- ant journey into the new frontier of aging. facing potentially terminal illness) or on Aging and Elder Care ior, be sure that his or her caregiver team Work at establishing regular intervals to Facebook can help. If you are the spouse consults psychiatric care in case antipsy- take breaks from being the main caregiver or partner of the aging person with ASD, Indiana Long Term Care Insurance Program: chotic drugs may be needed. Often elope- as much as you need, and/or as much as is this stage of life can be highly stressful. A www.in.gov/iltcp/ ment safeguards may need to be put in possible. Find friends and/or a counselor strong faith can be helpful in this or any place. In some elders, this confusion may with whom to share concerns and frustra- time of great stress and worry. Most reli- AARP: www.aarp.org become a daily occurrence, regardless of tions. Talk to others in similar situations. gious denominations have group activities a new setting or one that is familiar. This Sometimes a social worker may be available that often involve spouses with aging or National Institute on Aging: www.nia.nih. may occur most often in the late afternoon to link you to others facing similar challeng- ill partners. gov/search/site/aging or early evening. es. If not, consider forming a support group I encourage you to stay in touch with oth- Don’t offer props or strategies when locally or online. Stay aware of what makes ers who are involved on a daily basis with National Council on Aging: www.ncoa.org they are not needed. Over-anticipating you a mentally and physically healthy care- ASD and aging, whether caregivers or cli- their challenges can further their reliance giver. Stay physically as strong as possible nicians. Though each path will be unique, American Society on Aging: www.asaging.org on others. by regular exercise, yoga, or other forms of many circumstances will be similar. Keep Remaining a healthy caregiver is key meditation, or just taking a daily walk. collaboration your key to success. Administration on Aging: www.aoa.gov

Challenges from page 18 lives, not to mention acquire knowledge older adults on the spectrum as possible, cases may otherwise live independently). and skills over many years, autism itself is and at the same time improving awareness In many instances, little more than minor them to be of great value to our community. usually not considered a degenerative con- about the common behaviors and traits of accommodations will be necessary. For so- dition, even as many other aspects of aging and challenges faced by these individuals, ciety as a whole, appropriate resources and Looking to the Future are; the former can perhaps be taken ad- especially among those who provide any accommodations, where necessary, need to vantage of to help mitigate the latter when- form of care or services for them. Some be provided or otherwise made available. One possible bright spot in all of this is ever possible. As bleak as the present situ- individuals will require intensive long- that, because many of us develop count- ation may be for many, it can be addressed, term care, whereas lower-level supports Karl may be contacted at kwittig@ less coping mechanisms throughout our first and foremost, by identifying as many will be sufficient for others (who in some earthlink.net. AUTISM SPECTRUM NEWS ~ SUMMER 2019 AutismSpectrumNews.org PAGE 23

New Model from page 13 cult to do. CRISPR consists of a DNA-cut- itations of studying neurological disorders breathing problems. ting enzyme called Cas9 and a short RNA in mice, whose behavioral symptoms and “Given the limitations of mouse models, Syndrome, whose most common charac- sequence that guides the enzyme to a spe- underlying neurobiology are often differ- patients really need this kind of advance to teristics include intellectual disability, im- cific area of the genome. It can be used to ent from those seen in humans. bring them hope,” Feng says. “We don’t paired speech and sleep, and repetitive be- disrupt genes or to introduce new genetic “Because the macaque model shows know whether this will succeed in devel- haviors. The majority of these individuals sequences at a particular location. a much more complete recapitulation of oping treatments, but we will see in the are also diagnosed with autism spectrum Members of the research team based in the human behavioral phenotype, I think next few years how this can help us to disorder, as many of the symptoms overlap. China, where primate reproductive tech- we should stand a much greater chance of translate some of the findings from the lab The protein encoded by Shank3 is nology is much more advanced than in identifying the degree to which any partic- to the clinic.” found in synapses — the junctions be- the United States, injected the CRISPR ular therapy, whether it’s a drug or any oth- The research was funded, in part, by the tween brain cells that allow them to com- components into fertilized macaque eggs, er intervention, addresses the core symp- Shenzhen Overseas Innovation Team Proj- municate with each other. It is particular- producing embryos that carried the Shank3 toms,” says Platt, who was not involved in ect, the Guangdong Innovative and Entre- ly active in a part of the brain called the mutation. the study. preneurial Research Team Program, the striatum, which is involved in motor plan- Researchers at MIT, where much of the National Key R&D Program of China, the ning, motivation, and habitual behavior. data was analyzed, found that the macaques Drug Development External Cooperation Program of the Chi- Feng and his colleagues have previously with Shank3 mutations showed behavioral nese Academy of Sciences, the Patrick J. studied mice with Shank3 mutations and patterns similar to those seen in humans Within the next year, the researchers McGovern Foundation, the National Natu- found that they show some of the traits with the mutated gene. They tended to hope to begin testing treatments that may ral Science Foundation of China, the Shen- associated with autism, including avoid- wake up frequently during the night, and affect autism-related symptoms. They also zhen Science, Technology Commission, ance of social interaction and obsessive, they showed repetitive behaviors. They hope to identify biomarkers, such as the the James and Patricia Poitras Center for repetitive behavior. also engaged in fewer social interactions distinctive functional brain connectivity Psychiatric Disorders Research at the Mc- Although mouse studies can provide a than other macaques. patterns seen in MRI scans, that would Govern Institute at MIT, the Stanley Cen- great deal of information on the molec- Magnetic resonance imaging (MRI) help them to evaluate whether drug treat- ter for Psychiatric Research at the Broad ular underpinnings of disease, there are scans also revealed similar patterns to ments are having an effect. Institute of MIT and Harvard, and the drawbacks to using them to study neuro- humans with autism spectrum disorder. A similar approach could also be useful Hock E. Tan and K. Lisa Yang Center for developmental disorders, Feng says. In Neurons showed reduced functional con- for studying other types of neurological Autism Research at the McGovern Insti- particular, mice lack the highly developed nectivity in the striatum as well as the disorders caused by well-characterized tute at MIT. The research facilities in Chi- prefrontal cortex that is the seat of many thalamus, which relays sensory and mo- genetic mutations, such as Rett Syndrome na where the primate work was conducted uniquely primate traits, such as making de- tor signals and is also involved in sleep and Fragile X Syndrome. Fragile X is the are accredited by AAALAC International, cisions, sustaining focused attention, and regulation. Meanwhile, connectivity was most common inherited form of intellectu- a private, nonprofit organization that pro- interpreting social cues, which are often strengthened in other regions, including al disability in the world, affecting about motes the humane treatment of animals in affected by brain disorders. the sensory cortex. 1 in 4,000 males and 1 in 8,000 females. science through voluntary accreditation The recent development of the CRISPR Michael Platt, a professor of neurosci- Rett Syndrome, which is more rare and and assessment programs. genome-editing technique offered a way to ence and psychology at the University of almost exclusively affects girls, produces engineer gene variants into macaque mon- Pennsylvania, says the macaque models severe impairments in language and mo- Reprinted with permission of MIT News keys, which has previously been very diffi- should help to overcome some of the lim- tor skills and can also cause seizures and (http://news.mit.edu/)

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Communication from page 15 academic skills that are embedded in ly motivated adolescents and adults with of the group. Conversely, the politics/reli- functional tasks” (Volkmar, Reichow, & ASD how to interact effectively in a neu- gion-averse participant learns to regulate will ideally lead to more success for these McPartland, 2014, pg. 45). Thus, individ- rotypical world, then understanding the her reactions to the politics/religion-cen- individuals in navigating the milieu of in- uals have the potential to develop authen- ecologically valid social customs of the tric participant’s choice of conversation teraction in academic, extra-curricular, or tic social skills by testing their boundar- dominant peer group is essential” (Volk- topic. Subsequently, both individuals can professional contexts. ies and building skills around navigation, mar, Reichow, & McPartland, 2014, pg. come to a greater understanding of their We have found through our Summer decisiveness, regulation, budgeting, and 67). Thus, by manufacturing a peer group unique social perspectives in the context and Winter in the City group programs, more in addition to those that occur in the for participants, they may obtain the nec- of the group (and perhaps society at large), which take participating students on a se- social context. essary social skills development outside ideally walking away with a deeper appre- ries of day-trips and outings around New Before any skill improvement can oc- of the vacuum of simply talking about or ciation for themselves and their capacities. York City for two weeks, that New York cur, there must exist buy-in from indi- practicing skills one-on-one. This gives Suffice to say, if ASD support networks City serves as a uniquely rewarding locale viduals at the center of any ASD skill the opportunity to bolster that develop- can provide the scaffolding for individuals for developing social skills organically. development support group. To help ment in context of a larger group that can to develop positive self-identity and social Participants have the chance to develop spur engagement and interaction, partic- establish its own accepted and expected skills, then we will have done our part to authentic and translatable social skills in ipants should be encouraged to take an behaviors, as well as providing social foster their growth and ease their eventu- a city that provides many opportunities active role in planning out which activ- feedback in real-time, ideally avoiding al integration into society, in turn giving for various activities, cultural immersion, ities, sights, and experiences the group the “square peg, round hole” conundrum. them the tools necessary to find success in differing sensory inputs, and a unique el- explores. This should be achieved collab- The larger context of group-driven the long-term. ement of randomness. Unforeseen chal- oratively by the entire group, which pro- social programming allows students to lenges and teachable moments supplement vides participants the opportunity to be improve their social awareness via inter- Braden Winslow, BA, Coach, New Fron- the students’ social skill-building. “The confronted with differing opinions, dispa- action with each other, providing the po- tiers in Learning, and Samantha Feinman, person who has heightened sensory sen- rate interests, and disagreements on what tential for social “hiccups” that students MSEd, TSHH, Director, New Frontiers in sitivity may perform well in a low-stimu- the group should do. Navigating these learn to navigate. For example, a partici- Learning (www.nfil.net), can be reached at lation environment but become physically common social occurrences in the context pant may insist upon not talking about pol- [email protected] or 646-558-0085. uncomfortable... in an environment that of a group that shares similar social ob- itics or religion at all, as she has perhaps has too many irritants. The problem and stacles enables participants to learn in a compartmentalized these topics as being References the solution are not within an individual, judgment-free space that helps define for inappropriate for social engagement, since but rather in the person-environment fit” how they choose to fit into the mold of they oftentimes lead to disagreement or Gobbo, K., & Shmulsky, S. (2016). Autis- (Gobbo & Shmulsky, 2010, pg. 3). Addi- expected social behaviors. Furthermore, conflict. Another participant, however, tic Identity Development and Postsecond- tionally, “a person who is taking public as participants begin to deepen their rela- may only want to talk about politics or re- ary Education. Disability Studies Quarter- transportation from one point to another tionships with their peers, they may begin ligion, which presents a clear opportuni- ly, 36(3). doi:10.18061/dsq.v36i3.5053 has to read the schedule and signs around to self-impose the decorum of social inter- ty for skill-building for both students. An him or her, provide payment for the use of action and spur that process in each other, effective approach to getting around this Volkmar, F. R., Reichow, B., & McPartland, the transportation, maintain safety while yielding a dynamic that further allows potential social obstacle is to challenge the J. C. (Eds.). (2016). Adolescents and Adults interacting appropriately with others, for social skills development in consid- latter participant to not talk about politics/ with Autism Spectrum Disorders. Retrieved and observe their community to identify eration of the aforementioned ecological religion at all, and to try and find other February 25, 2019, from https://www. their stops. All of these activities involve approach: “If the goal is to teach social- topics that don’t alienate certain members springer.com/us/book/9781493905058

Camouflage from page 6 workplace. All these factors can lead to About auticon first social enterprise to scale this model a so-called “autistic burn-out.” The con- across Europe. For more information, visit These are often borrowed from the be- stant psychological and cognitive peak auticon is an IT and compliance con- www.auticon.com. havior of their colleagues in order to performance eventually leads to a break- sulting business and the first enterprise to radiate self-confidence to the outside down. The fact that more autistic women exclusively employ adults on the autism References world. Since many autistic people also suffer from the problems described does spectrum as IT consultants, providing qual- react extremely sensitively to tactile not mean, however, that their male coun- ity assurance testing on software and web- 1. Meng-Chuan Lai, Michael V. Lombardo, Am- stimuli, they find it unpleasant to wear terparts are free from these problems based applications. auticon employs more ber Ruigrok “Quantifying and exploring cam- tight-fitting clothing. Therefore, it is - female autistic women are only better than 100 IT consultants on the autism spec- ouflaging in men and women with autism” Sage especially difficult for autistic women at playing the nerve-wracking game of trum in the UK, Germany, France, Canada, Journals, November 29, 2016 https://journals. to correspond to the dress codes in the hide-and-seek. United States and Switzerland, and is the sagepub.com/doi/10.1177/1362361316671012

Building from page 18 aging and disability service networks to meaningful social engagement) are not partnership is crucial. work collaboratively to develop appro- unique to those living without a disability. services, peer-support opportunities, and priate and attractive models of commu- However, to understand the preferences Caitlin E. Coyle, PhD, is a Research Fel- social opportunities for adults aging with nity support for older adults with autism. of persons with autism for how commu- low at the UMass Boston Center for Social autism can be crucial to the successful ag- The needs of older persons to remain liv- nity support services are provided and to and Demographic Research in Aging and ing of older persons with autism. ing independently (housing, transporta- explore how these preferences are tied to Danielle Waldron, MS, is a PhD candidate As gerontologists, we are calling on the tion, access to care, and opportunities for their goals for later- cross-disciplinary at the UMass Gerontology Institute.

Sibling from page 19 trations, and that it helped them under- The Center is grateful for the siblings The University of California, Irvine stand ASD and how the diagnosis impacts who participated in this series and is look- School of Medicine Center for Autism experience for both the caregivers and their brother or sister. Additionally, sib- ing forward to providing more opportuni- & Neurodevelopmental Disorders is a siblings. Siblings shared that the support lings said the series helped them develop ties like this to continue making a positive non-profit entity within UCI Health. group helped them feel connected with more compassion towards their siblings impact in the life’s of those who have a For more information, please visit www. others who had similar feelings and frus- with an ASD diagnosis. loved one with ASD. thecenter4autism.org. AUTISM SPECTRUM NEWS ~ SUMMER 2019 AutismSpectrumNews.org PAGE 25

Fund from page 21 Autism Care Demonstration (Autism Care to other behavior support services. Realize under the section for parents and families. Demo) covers applied behavior analysis there is a waiting list for the Waiver, so do Your local library may also be able to assist to as Traditional Medicaid; Hoosier Care (ABA) services for all eligible TRICARE not expect it will happen right away. you in finding grants to apply for to cover Connect; Hoosier Health Wise; and MED beneficiaries diagnosed with an autism The Children’s Special Health Care Ser- some therapy costs. Works. Medicaid carriers include Anthem, spectrum disorder. vices (CSHCS) Program helps families of If either your ABA provider or funding MHS and MDWise. These are insurance Family Voices Indiana provides a helpful children ages 0-21 with serious chronic source provides information that seems companies that are contracted by the State Fact Sheet regarding purchasing insurance medical conditions get treatment related confusing or contradictory, contact: of Indiana to manage some Medicaid for all children with special needs. This in- to their child’s medical condition. Autism Indiana Arc- Insurance Advocacy Re- Health Plans. You do not have to “switch formation can be found at http://www.fvin- is a CSHCS eligible medical condition. sources Center: https://www.arcind.org/ Medicaid types” to access ABA coverage. diana.org/wp-content/uploads/2018/01/ CSHCS is the payer of last resort. This our-programs/insurance-advocacy-re- You do have a choice of Medicaid carriers. FS_Guide-to-Purchasing-Insurance-1.pdf. means that the program may pay only af- source-center/. Michele Trivedi is an INARC Not all ABA providers accept Medicaid Note: Know your insurance policy and ter your private health insurance and Med- Manager and health advocate with many insurance. They may choose to participate follow the appropriate procedures. Sub- icaid have been billed. CSHCS is not an years’ experience. You can contact Michele in all Medicaid plans, some plans, or none. mit your child’s Care Plan that your ABA insurance program, but can provide sup- at 317-977-2375 or toll free 800-382-9100. It will be important to ask the ABA provider provider and you have developed to the plemental funding. This program is fed- Her email is [email protected]. about what Medicaid options they accept. appropriate person or department within erally and state funded, and features care Family Voices Indiana- Indiana’s Fam- An ABA provider must be a participating your insurance carrier. Keep organized and coordination services that help children ily to Family Health Information Center: provider with Medicaid, AND be a partici- thorough records of all dealings with your and their families get medical care that can http://www.fvindiana.org/. pating provider who is credentialed by the insurance carrier, especially paperwork include ABA. If eligible for ABA coverage Call their toll-free number, 844-323- insurance carrier who may be managing sent and received. through the CSHCS program, coverage is 4636 and ask to speak to a specialist in your the Medicaid plan. For example, if you limited to $10,000 per child, per calendar area. You can also email them at info@ have Medicaid managed by MHS and your Other Options year and the ABA provider must be en- fvindiana.org. Spanish speaking specialists ABA provider is a participating provider in rolled with CSHCS. are also available. Medicaid, but NOT with MHS, they cannot You may have insurance but find that United Healthcare Children’s Founda- be paid by MHS Medicaid managed plans. additional coverage and services are need- tion (UHCCF) purpose is to help fill the Marci Wheeler, MSW, is Social Work They must be “credentialed” by MHS and ed for your child. Eligibility for the three gap between what medical services and Specialist and Dr. Cathy Pratt, BCBA-D, be in the MHS network. programs and services listed below varies equipment a child needs and what their is Center Director at the Indiana Resource Effective August 1, 2018, if individuals and may be dependent upon family income, health insurance benefit plan will pay. UH- Center for Autism at the Indiana Institute under age 21 are deemed appropriate for and/or the diagnosis, age, and level of care CCF grants provide financial assistance for on Disability and Community at Indiana Applied Behavior Analysis (ABA) thera- needs of your child. Supplemental funding families with children, ages 16 and younger University, Indiana’s Center for Excellence py, providers should access funding under for services may be available from one or that have medical needs not covered or not on Disabilities. For more information, visit Early and Periodic Screening, Diagnostic any of these programs. Families are encour- fully covered by their health insurance plan. https://www.iidc.indiana.edu/pages/irca. and Treatment (EPSDT). Visit the website aged to apply for the following programs: Award amounts are up to $5,000 or 85% This article is reprinted with permission. at (https://www.iidc.indiana.edu/pages/ In Indiana, there are two Medicaid waiv- of the fund balance, whichever amount is You may view the original article, pub- medicaid-epsdt; https://www.medicaid. ers designated for people with developmen- less, within a 12-month period. The grant lished on January 15th, 2019, at https:// gov/medicaid/benefits/epsdt/index.html) tal disabilities. These are the Family Sup- is paid directly to the health care provider. www.iidc.indiana.edu/pages/how-do-i- for more information on EPSDT. ports Waiver (FSW) and the Community For more information and to apply, see the fund-my-childs-applied-behavior-analysis To learn more about Indiana Medicaid Integration and Habilitation Waiver (CIH). UHCCF website https://www.uhccf.org/. options, visit: https://www.in.gov/medicaid/ ABA is not a specific service of either the In addition, you may want to check out References index.html. If you are unsure which type FSW or the CIH waiver. However, the waiv- a limited number of grants that are listed of Medicaid you have, call the Division of ers can be a funding source for non-medi- on the Indiana Resource Center for Autism Wheeler, M. & Pratt, C. (2019). How do Family Resources at 1-800-403-0864. cally necessary behavioral supports. ABA website. The article, Grant Funding Oppor- I fund my child’s applied behavior analy- If your family receives military health is not an available service for individuals tunities: For Families and Professionals is sis (ABA)? Retrieved from https://www. care benefits (US armed services “TRI- 21 and older through the FSW and CIH found here: https://www.iidc.indiana.edu/ iidc.indiana.edu/pages/how-do-i-fund-my- CARE”), the TRICARE Comprehensive Medicaid Waivers. They can have access pages/grant-funding-opportunities. Look childs-applied-behavior-analysis.

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 more information, visit www.ASDGroupsWestchester.com or contact the facilitators: Robin Kaufman, PhD, and Lauren Greiner, PhD | [email protected] 914 497-1590

Upcoming Meeting Dates: 2019: 9/22, 10/27, 11/17, 12/15 2020: 1/26, 2/23, 3/22, 4/26, 5/17, 6/7

Westchester Arc

The Gleeson-Israel Gateway Center 265 Saw Mill River Road (Route 9A) Hawthorne, NY 10532 PAGE 26 AutismSpectrumNews.org AUTISM SPECTRUM NEWS ~ SUMMER 2019

Parents from page 17 We would spy on their care providers. We forever or becoming actual ghosts is hardly lon.com, and The Boston Globe. For more would make sure our comrades’ dependent a plan for this very complicated world our information, visit http://susansenator.com. like special education teachers—I want loved ones are safe and happy. We would vulnerable loved ones. Parents, neighbors, This article is reprinted with permis- to unite autism parents worldwide to help be a group committed to having each oth- citizens: we need to take back the night sion. You may view the original article, each other. To this end, we should start a er’s back. We would recruit younger par- and push our legislators to do better and published on April 27th, 2019, at www. network I’m calling GHOST, which stands ents who will need this help as they age. engender a qualified, caring, and well-paid psychologytoday.com/us/blog/all-fami- for “Giving Help from the Other Side, Our motivation would be simple: to have workforce before more lives are shattered. lies-are-not-alike/201904/why-autism-par- Together.” In this imagined organization, a community of truly invested people to Susan Senator is the author of numerous ents-say-i-can-never-die. autism parents would provide another set keep our guys safe. autism books including Autism Adulthood: The viewpoints expressed in this article of eyes for someone else’s adult autistic I am not joking about GHOST. Who bet- Insights and Creative Strategies for a Ful- do not reflect the opinion of the Autism loved one. We would trade off checking in ter to check up on things than another par- filling Life. Her writing has appeared in The Spectrum News Editorial Board or the on one another’s adult autistic loved one. ent in the same boat? Because really, living New York Times, The Washington Post, Sa- Publisher, Mental Health News Education.

Best Practices from page 8 wonderful way our aging adults can contrib- to senior citizens. An Adult Autistic Clinic ple in school systems in the US and in Is- ute to the world around them. at Mt. Sinai Hospital in Miami, Florida for rael to develop programs for students who might look like, this movie received out- Second, we know that as this popula- example, is impressive in its scope, dedi- might not otherwise be able to function in standing reviews. Hoffman won the Oscar tion ages, there is a tendency toward so- cation and commitment to providing a full a typical classroom. She counseled and for best actor for his dramatic portrayal of cial isolation and loneliness (Hickey and comprehensive service offered by profes- guided teachers, administrators and par- an autistic adult. Crabtree, 2018). Lowered life expectancy sionals who understand adults with autism. ents to recognize the needs of the disabled The process, then, of introducing the may also be an outcome of lack of social As the prevalence rate continues to in- population. subject of autism to the general public by involvement (Vaillancourt, 2016). Dwin- crease in children, this trend clearly affects Today, Marlene works closely with ser- exploding myths and taboos and taking a dling financial support and community future support of our adults with autism. vice care providers to maximize the poten- serious, sensitive and reasonable approach interest at the very time when it may be My fifth principle, then, is based on a re- tial of the autistic population in a work set- to educating persons unfamiliar with an most needed to support the needs of the ality that there needs to be an increase in ting. In addition, she counsels and advises ASD requires time and commitment. I call adult on the spectrum is a subject which resource allocations reflecting this upward parents about resources, opportunities, this the 5 A’s process or 5 Steps, based on Gottlieb (2015) addresses in his well-artic- trend of diagnosis. I am heartened by the and the legal aspects of raising an autistic Stephen Shore’s paradigm presented in a ulated NY Times editorial “Adult, Autistic push toward a greater commitment of re- child to adulthood. Marlene and her family paper he delivered at a conference in Bah- and Ignored.” Life is fluid for us neuro- sources as promoted by the Autism Collab- currently reside in Israel and sponsor, host, rain, April 2, 2019. The model provides a typicals as well as for our autistic adults oration, Accountability, Research, Educa- and organize conferences, social events, framework which can help us understand and change, something that those on the tion, and Support Act (Autism CARES), a and gatherings in order to promote aware- the multiple challenges facing an autistic spectrum struggle with constantly, brings primary source of federal funding for au- ness about the needs of autistic adults. adult, while providing a basis to support with it very human and predictable events tism research, services, training and mon- For more information, please visit and inform critical decisions about the fu- such as sickness, loss and grieving. How to itoring. Under the CARES ACT, lawmak- https://www.marleneringler.com. ture of the adult on the spectrum. cope with these potentially overwhelming ers are looking to secure an additional $1 changes and emotions means we need to billion to ensure that for the first time, this References 1. Acknowledging a diagnosis of autism boost psychological services which must allocation places an emphasis on the needs as a lifelong disability be made available and must be seen as of adults with autism by adding the phrase Attwood, T. (1998). Asperger’s Syndrome: simply one more treatment - planned and “across the life span.” A Guide for Parents and Professionals. 2. Accepting the limitations as well as the prepared in advance - so that our adult chil- To summarize I propose that these 5 London: UK. Jessica Kingsley Publishers. strengths dren are more able to adjust to the realities principles serve as guidelines to help us as they transition into adulthood and aging plan for transition of care in a responsible, Charlton, R. (2017, September). Researching 3. Accommodating to the needs of the au- (Mazurek, 2014). thoughtful and reasonable manner. Keep- Autism and Ageing, Network Autism, UK. tistic adult Third, in addition to boosting psycholog- ing in mind that an estimated 1% of the ical services, we should deepen and extend world population has been diagnosed with Donvan, J and Zucker, C (2016). In a Dif- 4. Appreciating their potential to contrib- social services to include regular visits autism, it is essential that civil societies ferent Key: The Story of Autism. New York, ute to our society from professionals associated with the so- accept responsibility for their future well- New York. Crown Publishers. cial welfare system. The infrastructures for being. We should worry less about fixing 5. Applying what we know today about such services exist. Now we have to adapt our adult children and concentrate more Gillot, A., and P.j. Standen. “Levels of the autistic spectrum population to our and modify the infrastructure taking into on recognizing their strengths; boost inter- Anxiety and Sources of Stress in Adults aging population account the special needs of this special ventions such as psychological and social with Autism.” Journal of Intellectual Dis- population including research on topics of services; prepare those people tasked with abilities 11.4 (2007): 359-70. Web. With the concomitant limitations of solid autism and ageing (Charlton, 2017). taking good care of our aging children by research about this population, what must A formalized, systematic and organized enriching their knowledge base; and fi- Gottlieb, E. 2015, September 5. Adult, Autistic we do to apply what we do know today plan such as the private, for pay service nally, work to influence decision makers and Ignored. The New York Times, Opinion. in an effort to ensure a smooth transition proposed by The Asperger/Autism Net- to ensure that a proportionate increase in from adolescence to adulthood and from work, AANE (2019) called the LifeNet funding allocations reflects the clear and Halladay, A. (2018) A 2018 Year of Re- adulthood to aging? I suggest that transi- Program promotes the awareness of the current increase in the prevalence rates of view of Scientific Research. Autism Sci- tion of care topics include leisure and so- needs of the adult with autism by recog- both children and adults. Our aging chil- ence Foundation, December 23, 2018. cial opportunities, medical issues, housing nizing that the family may not be avail- dren deserve no less. options, employment and volunteer choic- able when the aging autistic adult may be Hickey, A. and Crabtree, J. (2018, Febru- es, and legal and ethical considerations. In most needy. The program appears to hold Dr. Marlene Ringler is a Ph.D. in En- ary 2). Autism and Ageing: Loneliness and addition to these transition of care needs, I promise as a creative solution to the ques- glish Language and Literature as well as Isolation, National Autistic Society, Net- suggest that there are 5 critical and overar- tion I raised about who will look after the a trained and certified teacher, CEO and work Autism. ching principles which might influence our needs of my forty+ son when I am no lon- founder of the international Ringler En- best practices. ger here. glish Language Institute. Her company Mazurek, M. (2014, April 22). Loneliness, The first principle is to worry less about Fourth, based on evidence-based studies was recognized as a lead vendor for glob- Friendship and Well-being in Adults with trying to cure them, fix them, and heal beginning to emerge in the scientific com- al training for multinationals including ASD, Interactive Autism Network (IAN). them or to make them neurotypical. They munity (Halladay, 2018), we now under- Toyota, Intel, IBM and Microsoft. She pi- are not as adults and were not as children. stand that there is reason to believe that the oneered the concept of in-house training Robison, J. (2018, September 2). Life, Let us rather try to understand the experi- aging adult with autism may suffer from specifically in business settings. When Love and Happiness for Autistic Adults- ences this population faces each and every higher incidences of conditions as schizo- living in the United States, Marlene was What Happens to Autistic People as they day and to see beyond their sometimes phrenia and Parkinson’s, as well as possibly the co-coordinator of the English for Spe- Age? Psychology Today. strange and unconventional ways. a twenty times greater risk of anxiety and cific Purposes and English as a Second With the support systems in place, includ- depression. We need therefore, to reach out Language adult training programs for Silberman, S. (2013) Neuro Tribes: The Leg- ing family and communities, we can guide to the caregivers, medical staff, and support refugees and immigrants for Montgomery acy of Autism and the Future of Neurodiver- our aging autistic adult population to appre- service providers by initiating a campaign County Public Schools in Maryland. Her sity. New York, New York. Penguin Books. ciate and apply the best they have to offer as to educate, train, and prepare them so they program was nominated for special rec- older, more experienced autistic adults. For are more comfortable and able to deal with ognition by the White House for its work Vaillancourt, M. (2016, April 2). It Is No example, mentoring younger autistic adults, the challenges that lie ahead as our autistic in adult literacy. An advocate for persons Surprise That People with Autism Have a as Dr. Tony Attwood has suggested, is one children become adults and then transition with disabilities, Marlene encouraged peo- Low Life Expectancy. Independent Minds. AUTISM SPECTRUM NEWS ~ SUMMER 2019 AutismSpectrumNews.org PAGE 27 Promote Your Vital Programs, Services, and Events and Reach Over 100,000 Readers in the Autism Community Across the Nation Your advertisement will be clickable and in color in the digital edition on our website

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