Avoiding Autism’s Cliff
How To Improve Transitions Into Adulthood
By Erin O'Donnell--Changing the language surrounding autistic people was a major topic of discussion at the YAI Network New York City Autism Conference in New York April 12th. Stephen Shore Ed.D., Clinical Assistant Professor of Special Education at Adelphi University is himself on the spectrum and sought to reclaim an identity for the condition that has challenged families, schools and policymakers. “Most people on the spectrum prefer to be identified as autistic,” Shore said, “because it’s not shameful. It’s person-first language.”
The event focused on an often overlooked aspect of autism policy and services – the transition from late teen into young adulthood.
Only 36% of autistic young adults attend any postsecondary education, just 37% received vocational services and/or job training after high school, and about 19% live independently away from parents without supervision, according to an Autism Speaks study.
For owners of autism treatment services such as applied behavioral analysis, or anyone involved in programs for families of autistic children, the statistics represent a possible opportunity to fill unmet needs.
But for parents of children on the autism spectrum, solutions are needed now. 'We have worked really hard for Max but I do worry that after high-school there won't be opportunities, that he'll slide back,' says Randi, a mother of a 14-year-old boy who has had to deal with Tourette's for most of this childhood. Families like Randi's work extremely hard to achieve companionship, stability, growth and just overall happiness for their kids but after age 22 there is little funding for autistic people to help them transition into adulthood, and parents find years of effort erode.
Susan Senator is a parent of a young adult on the spectrum and she created what she calls a Deep Resume for her son Nat even before he graduated high school. Nat didn’t have much traditional work experience, so Senator, now an author of a book on the subject, highlighted his skills. “I focused on things that I really felt proud of him from his life,” whether it’s memorization skills or putting things apart and back together again. Start with outlining school, skills, experience, passions or something special the person does, then create a very specific objective that matches these interests and skills. Nat’s objective was simple: “To work at a job with at least one well-defined task, preferably having to do with organizing and storing.” People on the spectrum already know how to find their skill set because they have been doing it their whole lives in schools, and once they graduate, they get to decide what they’re most passionate about and pursue it. Senator encourages parents of young autistic adults to look at their current possibilities such as traditional day programs or community colleges and see what they have to offer for jobs. The best place she met other parents was at the Special Olympics and from there cultivated her own community and just learned what other parents do. Her book, Autism Adulthood: Strategies and Insights for a Fulfilling Life, captures many of these recommendations.
But there’s an uphill battle for families. Only 12% of autistic people are employed to their full capabilities so reframing how a person on the spectrum spends their time is crucial to building a career. For example, if an autistic child likes to play with a water hose and spray it with their thumb, a possible career path could be power washing or car washing. Something that is usually seen as a negative thing can be reframed as positive. An autistic child’s obsessions whether they’re sensory or not can provide powerful motivation for career options, says Shore. In fact, some small IT companies are actively seeking autistic employees because of their outstanding memorization, mathematics and logical skill sets that another person might not have. “There is employment for all across the spectrum,” Shore believes, but to create careers, autistic teens nearing adulthood need to focus on their skills, not deficits.
There are also now schools and other social media resources designed to direct families with transitions. For current owners of autism treatment programs, these social media sites are likely referral channels.
INCLUDEnyc provides specialists via a help line to give parents in-depth, one on one help and referral information every week from 9am-3pm. The help line is a New York state-funded Special Education Parent Center for four of the city’s boroughs, and it’s helping change conversations about people with disabilities as well as provide recreational opportunities and programs for young people up to 26 on the spectrum. INCLUDEnyc also conducts trainings for professionals on topics such as understanding Individualized Education Programs (IEPs), special education rights and school transition. Autism Speaks, meanwhile, created an app called Identifor to help parents answer questions such as, “Does Sally think in pictures, words, or music?” and “Would Bobby rather be outside working with plants or at a computer creating a mobile app?” The app helps families identify an autistic person’s unique capabilities and skillsets for the pursuit of fulfilling futures and careers. The app takes games that the young adult or child plays and collects data on how they react, and then answers questions and makes decisions to assess multiple intelligence, executive functions and career interests.
The transition to adulthood is likely aided by dedicated secondary schools like Westbrook Preparatory in New York. This school is small at only 24 students but its mark on the disability community is large. New York State Regents supported junior/senior high school for students with Asperger syndrome, high functioning autism and related conditions. With funding from SCO Family Services and the state, the school is able to provide campus life and a college preparatory curriculum for students aged 12 to 24. Students have to be referred by their public school to attend Westbrook if it is determined that they will succeed there. In the residential program, students learn developmental skills related to hygiene, socialization and community integration. There are after-school events on and off campus like bowling, Zumba and pottery.
To address the full spectrum of the autistic student’s needs, Westbrook offers therapeutic services including an on-site board certified psychiatrist, clinical psychologist, social worker, and a behavior support specialist. There are counseling groups, including the ‘Coping Power’ group program that works as an evidence based intervention to increase a child’s emotional awareness, self-regulation and social competence.
Many people on the spectrum have other conditions that make the transition into adulthood that much more difficult. They can suffer medical issues such as gastro intestinal problems, impaired immunity, nutrition, and epilepsy, and often at least one or more behavioral health issues. Additional services are often challenging to acquire and this can leave a huge impact on the person and their family. Sairam Babu, who leads operations at Premier Healthcare in New York, says “many people can suffer medically because they do not get the proper treatment they need, even something like going to the dentist every 6 months for a cleaning.” Premiere collaborates with the YAI Network at The Center for Specialty Therapy to provide audiology, desensitization, nutrition, podiatry, primary care, psychiatry, speech therapy and more. For example, dentistry uses a team approach including a dentist, occupational therapist and behaviorist to help an autistic person overcome fears related to dental procedures with learning techniques to increase comfort levels. Day and residential services are also provided, including educational workshops on eligibility, medical and dental desensitization, skills training and behavior management, community habilitation, and ballet/yoga groups for autistic children.