Today, my husband was chatting casually with an acquaintance who knows our son Tom. Tom is 14, with high functioning autism; he's verbal, pleasant, but clearly "different." The acquaintance had heard about a nearby residential setting for adults with autism, and mentioned it to my husband. Her thought was that it might be a good option for our son sometime in the future.
My husband thanked her, but let her know that it's our intention to have our son live with us, at least for the foreseeable future (unless he winds up going off to college or making other educational or career choices that take him out of the area). If it seems to make sense, we could certainly help him to find an apartment or other living situation nearby, and provide supports as they're needed.
This idea seemed to be a surprise to our acquaintance. But we have a few reasons for our way of thinking.
First, it seems natural and normal to have members of different generations living in a family dwelling together. After all, the idea that a single individual would go off on his or her own to establish a home all alone, managing every aspect of daily life, is really very modern (and, in my opinion, not particularly desirable). Prior to the second world war, it was most unusual - and even today, with jobs so tough to come by, many adult children are continuing to live with their parents well into their twenties and beyond. Many people, autistic or "neurotypical," find the stress of life alone, with sole responsibility for working, shopping, cooking, cleaning, bills, home repair, car repair, social engagements, travel arrangements and more, to be overwhelming. What's the great attraction?
Second, while there are high quality, supported options for adults with autism, they are few and far between. There are none right around the corner from us. And even a good situation can change over time, as staff turns over and residents come and go. By the time our son is in his 20's, there will be more options available; for now, though, the idea of a group home or similar setting is a bit anxiety provoking.
Third, we have worked hard (and will continue to work hard) to help our son connect with his local community. We live in a fairly small town, and after just three years he knows and is well known by many of the people he interacts with on a regular basis. Librarians, waiters, even the folks at the bowling alley know his name, understand his differences, and have learned to communicate with him comfortably.
Fourth, Tom's begun to earn a place of real respect in this community, specifically for his musical skills. He's already recognized for his ability as a jazz clarinetist, and he'll be playing with the town band soon. This is happening not because Tom is a virtuoso, but because his talent and our networking abilities have made it possible for him to meet, interact with and get to know some of the musical leaders in our community. If he left our town, all those connections - and the respect he's earned - would disappear.
Fifth, we enjoy our son's company. We have plenty of room, and we're not planning to move. He does a fine job washing and folding the clothes, feeding the pets, and generally caring for himself and helping out around the house. What would any of us gain by having live in another community with people he's never met?
Lastly, we want our son to have a home where he feels comfortable and where he's known and loved. Today, he has us. In the future, he may find a life partner, friends, or another direction. If not, in the long run, we'll know that he has a home in a community where he's lived for the majority of his life. If he needs it, we can certainly set up personal and financial support for after we're gone. If he doesn't need it - well, nothing's lost.
Of course, not all families with autistic children have the personal or financial resources to have their child live with them - or on their nickel - indefinitely. And such an arrangement is far easier with a high functioning individual than with an autistic adult who really needs full time care. What's more, many adults with autism would prefer to live outside their parents' home (and our son could, potentially, be one of them).
Where are your thoughts on this question? Are you thinking ahead to an independent living situation for your child? A group home? Or do you have a different long term plan in mind?
More About Planning for Adults with Autism
- Finding the Right Home for Your Adult Child with Autism
- Plan for Your Child's Financial Future
- Residential Options for Adults with Autism