Creating Housing Solutions for Autistic Adults After Life with Aging Parents

Autistic adults face uncertainty in housing after a lifetime with aging parents. If your family is among them, you are not alone.

"[A] study by Easter Seals found that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home. Only one-fifth of children 16 and over with autism are employed, compared to 75 percent of people that age without developmental disabilities."

What's Next?

At some point, life at home with mom/dad will no longer be an option. Then what?

One family's struggles and creative solution was highlighted by the Chicago Tribune:

Larry and Beth Markin have a 22-year-old son, Eric, who is autistic. Two years ago, because of his aggressive behavior and the problems involved in caring for him, Eric was declared a crisis case by the state. The Markins knew he could no longer live with them in their Buffalo Grove home. But neither of their options was acceptable in their eyes.

“One was to drop him off at an institution,” says Larry, who points out that that would have meant signing away his parental rights. “The state would take him and they’d spend $150,000 or $160,000 [a year] to manage him in a state institution. My other choice … was to take whatever money [government programs] would give me, about $55,000, and I’d have to house him with six other people” in a group home. Neither setting would be conducive to Eric’s well-being. So the Markins took a bold leap, one that could serve as a model for aging parents having to care for their adult special-needs children.

Larry purchased his in-laws’ 50-year-old home—the house where Beth grew up and a place that Eric had visited and played in all his life. Then he poured a considerable amount of money into it, converting it to a state-of-the-art home for his autistic son, a personalized residence that takes into account his son’s behavior and needs. The house has been remodeled to accommodate a still-undetermined second special-needs person, as well as a caretaker provided by an agency.

What made this work?

This family went beyond the typical options: institution or group home -- and created their own solution. This solution is an example of pulling together resources from a number of sources that could be combined to meet the needs and answer the concerns of their own autistic adult.

  • purchase of a home their son was already familiar with and comfortable in

  • collaborated with professionals to redesign the home to fit his needs:

  • incorporate space for another autistic adult so that the home can qualify for some state assistance

  • utilized the services of a live-in caretaker from an agency

    Your turn to talk

    Conversations with aging parents about the future of their own autistic adult can be full of emotion. Fears can lead people to put off the conversation because their concerns can be overwhelming. Now you have the possibility of starting the conversation again with new possibilities.

    Rather than choosing between the limited options that are already available, you and your parents can be creative and design a customized solution for your special needs sibling in the future.

    What creative solution might best meet these needs?

  • lifestyle preferences

  • geographic preferences: present commumnity? near other family?
  • degree of independence and self-sufficiency

  • behavioral needs

  • safety needs

  • learning

  • social needs

  • need for functional support

  • supervision

  • transportation

    What available resources could be combined?

  • Financial Resources

  • Family Resources

  • Community Resources

  • Government Resources

  • Professional Resources

    Autistic Adults Housing Needs to Talk Early Talk Often With Aging Parents Home Page

    Enjoy this page? Please pay it forward. Here's how...

    Would you prefer to share this page with others by linking to it?

    1. Click on the HTML link code below.
    2. Copy and paste it, adding a note of your own, into your blog, a Web page, forums, a blog comment, your Facebook account, or anywhere that someone would find this page valuable.