Adulthood brings no end to the need for support. By definition, profoundly autistic adults require lifelong caregiving, including help with basic self-care and daily living. Families must navigate complex, often inconsistent systems for services, housing, and financial planning, which vary widely by state. Residential options are limited and waitlists are long. Parents face the difficult task of planning for the future, often relying on siblings to take on guardianship when they can no longer do so. The need for coordinated, compassionate, lifelong care is urgent and growing.
The most common terms you will hear when planning services, supports, and a secure future for adults with profound autism. Programs, rules, and names vary by state, but these definitions give you the big picture.
Susan Senator tackles the challenges of adult life for people on the more severe end of the spectrum, including those who cannot communicate for themselves, and works through the complex decisions that await parents and caregivers. She shares her family’s own story about her son, Nat, alongside interviews with parents, caregivers, researchers, and professionals.
Sessions from the Profound Autism Summit, available on demand through BehaviorLive. Many carry CE credit for behavior analysts.
Keep exploring resources connected to adult life and long-term planning.
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