Susan Senator

I attended the inaugural conference of the Profound Autism Alliance in April 2024, Burlington, Massachusetts. The conference had over 500 attendees who included parents and caregivers, self-advocates, professionals, and elected officials. It was an overwhelmingly positive and well-received summit, with presentations by leading autism researchers, autism support organizations, in-the-trenches parents, and medical and behavioral specialists.

For each of the talks I attended, I paraphrased points and added my own observations and tweeted these. The bulk of the talks I enjoyed centered on real-life studies and findings, as well as strategies, for fostering independence for those with profound autism. Profound autism is defined as: “being nonverbal, being minimally verbal, or having an intelligence quotient <50” as well as those in need of 24/7 oversight and protection against wandering, elopement, aggression, and self-injurious behaviors.

The first speakers were autism researchers Peter Gerhardt and Shanna Bahry. The thrust of this talk was to exhort educators and parents to “prioritize independence over perfection” in their profoundly autistic loved ones’ education. They made the important point that “every year in the US. 70,000 autistic teens become adults and lose school-based services. Insurance may cap services.” This situation means that post-22, autistic adults no longer have any of the federal entitlements under the ADA and IDEA (the Individuals with Disabilities in Education Act of 1990). Because of this devastating truth, close to 30% of autistic adults (those with profound autism), are forced to advocate for every single service they will have in adult life, and to rely on whatever they have learned from their education.

Education must therefore be “meaningful to the individual,” said Gerhardt. “We’re the biggest block in the lives of people with profound autism because we only use a deficit-based model. ‘Oh he can’t,’ we say, so we don’t teach it, so he doesn’t. It’s a self-fulfilling prophecy.” There must be several stages in profoundly autism student’s life where the educational team should consider that “anything that you can’t do, someone else will have to do for you” in adulthood. For more about this, see the work by Ayres et al., 2011: I Can Identify Saturn but I Can’t Brush My Teeth: What Happens When the Curricular Focus for Students with Severe Disabilities Shifts. Gerhardt and Bahry advised that “around age 10, time to Pivot, perhaps, to teaching more adaptive skills than developmental–academic–skills” but they were quick to add “of course that depends on the individual.” In other words, there’s no shame in learning primarily adaptive skills.

Gerhardt/Bahry’s talk was rife with useful examples of what to do instead of the usual time-consuming and frustrating behavioral training that occurs in many autism classrooms. For example, instead of spending days or weeks trying to teach someone to tie their shoes, just get them slip-ons. Done. The same goes for the arduous and dubiously useful task of asking someone like my profoundly autistic son Nat to count change, or identify coins. Teach him how to responsibly use a credit card. In preparing for adulthood in this confusing and complex world, figure out the short cuts and don’t waste any more time. Always assess the skills your profoundly autistic loved one needs for adulthood. At any age. The younger, the better. And don’t worry about what’s “normal.” Worry about building independence.

Other talks went more deeply into the focus that caregivers must adopt as early on as possible. Parent advocate and educator Cheryl Ryan Chan made the point that caregivers must stop doing activities of daily living for their profoundly autistic loved ones, even if that is very hard for we caregivers to do. We must remember that once we are gone, all of the tasks we do for our loved ones will have to be done by someone else. And the likelihood of finding people who can adequately replace all of those actions (done in the name of love, no doubt) is low. A caregiver or parent’s goal for their profoundly autistic individual must be independence. “Becoming a ghost is not a reality,” Ryan-Chan said.

The Arc of Massachusetts’ Deputy Executive Director Maura Sullivan presented important timelines that families should follow leading up to their autistic loved one’s graduation from high school. Items in this timeline include contacting your state agency to start a transition plan by age 14 (in Massachusetts this is called the 688 process); look into what guardianship entails, or its alternatives; become familiar with what ABLE accounts can do, and how to utilize them without jeopardizing your loved one’s eligibility for adulthood funding and benefits; and also: register your profoundly autistic individual to vote! I have written about this extensively; it is possible and legal.

Housing in autism adulthood is a topic on every autism parent’s minds. Cathy Boyle, Founder of Autism Housing Pathways, gave an excellent run-through of all the actions a profoundly autistic individual should take in terms of acquiring housing. “Apply for SSI, SSDI. Apply for supportive services, your Department of Developmental Services, Rehab, and Foodstamps, worth $290 a month, are one benefit to apply for autism adulthood. Also get on the Section 8 Waiting List.” Most of the funding streams Boyle discussed were not specific to Massachusetts; there are some very dependable federal resources. Boyle urged families and anyone working with a profoundly autistic person to familiarize themselves with Medicaid, and all that it does (potentially) for these individuals such as longterm residential housing and staff and in some states, community-based day programs.

I’d like to add that if your state doesn’t go for Medicaid reimbursement, scream at your legislators.

And if your autistic loved one is profoundly autistic, remember, you are their voice and a very important one. Cherish that role and stay strong; profound autism is not for the faint-hearted.