Autistic adultsoften need lifelong assistance, even for those with low support needs. For people with intense challenges, there is usually a residentialgroup home or other settingfor which they are eligible to receive funding benefits.
The reality is that most autistic young adults (87%) wind up living with their parents after high school.This begs the question: “What will happen to my adult autistic child when I die?” And with the prevalence of autistic adults on the rise, many of them capable of independent living with support, the question affects more families.
This article explores how a parent or guardian of an autistic adult can be proactive about the “what happens” questions and start preparing early. It presents some key steps you can take to ensure that your child is supported and cared for even when you’re gone.
Getty Images / Victoria Yee
Making the Most of Funded Services and Opportunities
Even if a child doesn’t qualify for residential funding in your state, you can make the most of the services that are funded to set the stage for a more independent life. Here is a list of possible ways to do that.
Autism and Family Life
Making the Most of Community Supports
In addition to maxing-out funded options, it’s extremely important for parents to help their adult children become active members of the local community. All too often, families of autistic kids live in relative isolation, struggling to maintain a predictable and uneventful life for the benefit of their autistic child.
Autistic adults may not always participate in family or personal activities with friends or family. Here are just a few ways to help a child make connections that can last a lifetime:
When Siblings or Others Take Over
In some cases, grown siblings or other friends or relatives are willing and able to become caregivers to an autistic adult. This is, of course, a major and often expensive commitment. Few autistic people are fully employed, and many have medical or mental health needs that can be costly.
When there is an agreed-upon caregiver to succeed the parents, it’s important to think through and communicate the logistics ahead of time. A few things to discuss together include:
In addition to having ongoing and open conversations about the future, it’s also important for parents or guardians to keep careful records about their autistic child’s service providers, funding, evaluations, and medical needs. If a sibling needs to take over in a hurry, all the information they need should be at their fingertips.
5 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Roux A, Shattuck P, Rast J, Rava J, Anderson K.National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, 2015. doi:10.17918/NAIRTransition2015Autism Society.National Statement: Autism Society Addresses Increased Autism Prevalence Rates in 2023 CDC Report.Wehman P, Schall CM, Mcdonough J, Graham C, Brooke V, Riehle E, et al.Effects of an employer-based intervention on employment outcomes for youth with significant support needs due to autism.Autism. 2017;21(3):276-290. doi:10.1177/1362361316635826Social Security Administration.Supplemental Security Income (SSI) benefits.Ohl A, Grice Sheff M, Small S, Nguyen J, Paskor K, Zanjirian A.Predictors of employment status among adults with autism spectrum disorder.Work. 2017;56(2):345-355. doi:10.3233/WOR-172492
5 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Roux A, Shattuck P, Rast J, Rava J, Anderson K.National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, 2015. doi:10.17918/NAIRTransition2015Autism Society.National Statement: Autism Society Addresses Increased Autism Prevalence Rates in 2023 CDC Report.Wehman P, Schall CM, Mcdonough J, Graham C, Brooke V, Riehle E, et al.Effects of an employer-based intervention on employment outcomes for youth with significant support needs due to autism.Autism. 2017;21(3):276-290. doi:10.1177/1362361316635826Social Security Administration.Supplemental Security Income (SSI) benefits.Ohl A, Grice Sheff M, Small S, Nguyen J, Paskor K, Zanjirian A.Predictors of employment status among adults with autism spectrum disorder.Work. 2017;56(2):345-355. doi:10.3233/WOR-172492
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Roux A, Shattuck P, Rast J, Rava J, Anderson K.National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, 2015. doi:10.17918/NAIRTransition2015Autism Society.National Statement: Autism Society Addresses Increased Autism Prevalence Rates in 2023 CDC Report.Wehman P, Schall CM, Mcdonough J, Graham C, Brooke V, Riehle E, et al.Effects of an employer-based intervention on employment outcomes for youth with significant support needs due to autism.Autism. 2017;21(3):276-290. doi:10.1177/1362361316635826Social Security Administration.Supplemental Security Income (SSI) benefits.Ohl A, Grice Sheff M, Small S, Nguyen J, Paskor K, Zanjirian A.Predictors of employment status among adults with autism spectrum disorder.Work. 2017;56(2):345-355. doi:10.3233/WOR-172492
Roux A, Shattuck P, Rast J, Rava J, Anderson K.National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, 2015. doi:10.17918/NAIRTransition2015
Autism Society.National Statement: Autism Society Addresses Increased Autism Prevalence Rates in 2023 CDC Report.
Wehman P, Schall CM, Mcdonough J, Graham C, Brooke V, Riehle E, et al.Effects of an employer-based intervention on employment outcomes for youth with significant support needs due to autism.Autism. 2017;21(3):276-290. doi:10.1177/1362361316635826
Social Security Administration.Supplemental Security Income (SSI) benefits.
Ohl A, Grice Sheff M, Small S, Nguyen J, Paskor K, Zanjirian A.Predictors of employment status among adults with autism spectrum disorder.Work. 2017;56(2):345-355. doi:10.3233/WOR-172492
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