What Will Happen to Autistic Children After Their Parents Die?

Community involvement can give autistic adults a support network

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What Happens to Our Autistic Child After We Die?

A while back, a friend directed my attention to a short video on the PBS site which features two families with adults on the autism spectrum.  The families were very similar.  Both were white and middle class (one family looked to be wealthier than the other, but neither seemed rich or poor).  Both families consisted of a mother and father in their later years (retirement age) with an autistic son in his twenties.  Both young men were verbal and responsive, but both were significantly challenged with what appeared, at least on the surface, to be intellectual and cognitive challenges as well as an overwhelming need for sameness and routine.

In both cases, the end of school services had signaled the end of therapies, and the end of many subsidized opportunities.  One young man, however, spent the day in a sheltered workshop; the other worked in a grocery store with a full time job coach.   Each seemed very comfortable with his work setting.  In other words, both had significant, daylong, supported situations in which they were gainfully employed outside of the home.  And in both cases the supported situation appeared to be funded by some kind of federal or state program (they were not private settings).

The parents' worry, therefore, was not so much "how can we cope with this situation."  The worry was "what happens when we die?"

Should Siblings Become a "Support Network?"

In one household, grown siblings had already agreed to become caregivers for their brother.  In the other, without siblings, the parents were working with other families (who were not interviewed) to create a full time group living situation.  Even as they worked toward this solution, however, the parents seemed very dubious as to whether their son could handle a group home.  They hoped, through privately-funded training in their own home, to prepare him for a more independent life.

Of course, these families  represent a large group of people in (or soon to be in) similar situations.  Peter Gerhardt, one of the few people with serious experience in working with adults on the spectrum, described the expected flood of adults with autism as a "tsunami."  The reason is really quite simple: more children diagnosed with autism means, in the long run, more adults with autism.  School programs are comprehensive and available to all -- but adult programs are sketchier, and may involve long wait lists, particularly for families in which the adult with autism has no aggressive behaviors and is capable of handling daily care and job routines.

Helping Your Autistic Child to Join the Community

One thing that really struck both me and my husband as we watched the video was the incredible isolation portrayed.  The parents and son, in both cases, seemed to live in a vacuum.  There was no mention of family activities; no description of the son's outside activities; no mention of friends or family (outside of the siblings, both living far away).  In essence, these families were on their own - and so were their sons.  The families had dedicated themselves to their sons' desire for sameness and routine; one parent noted "we've each been able to live half an adult life."

Of course, the worry about "after we die" is a real one for parents of any adult with a disability.  But it seems clear that we cannot depend on a governmental safety net to provide the support, love, and community our adult children need.  Just as we expect to plan and engage with our young children's lives, we need to plan and engage with creative problem-solving and community-building for our adult children, so that our lives and our children's lives are not described in terms like "plight" and "dire."

One thing that our family has done - by intent - is to leave the anonymity of the suburbs for a smaller town.  This makes a difference.  A real difference.  Here, our son with autism is not a weird stranger: he's Tom.   That matters.

Volunteerism and Inclusion as a Cure for Anonymity

When we go to the library, the librarian knows him by name.  When we go to the bowling alley, the alley owners know his shoe size.  The staff at the YMCA know him well, and are willing to make small accommodations in programs that could otherwise be challenging for him.

Tom is a good clarinet player; every music educator in town knows his skill, and knows him.   He plays in the school band and is starting to play with the town band.  The summer camp run by the regional symphony has been a blessing, not only because it's a terrific camp but because the same people who run the camp also run the town band, the conservatory, and the symphony.  They like Tom, and respect his talent.   Small world.

As community members, we are also increasingly aware of where the opportunities are for volunteer work, internships, and, potentially, employment.  We know about jobs - not just at Walmart or the grocery store, but in business and non-profit settings - that could potentially provide opportunities for our son.  We know the individuals who run the businesses and non-profits.  And we are very clear that, while smaller businesses and non-profits don't typically employ "the disabled," they may well be willing to employ a particular individual whom they've known, and liked, for many years.

Having grown up in the suburbs and lived in the city, I know how easy it is to feel like a chip of bark floating on a huge ocean of people - alone in a crowd.  But I also know that it's possible to live differently.  I've seen extended families who care for their own.  I've watched communities support members who need a little extra help.  Here in our town, a low-cost community-based program supports seniors and disabled adults with home services and transportation - without the need for government red tape or funding.

Staying Local Can Mean Staying Connected

None of this means that we know that Tom will be "just fine" when we're gone.  There's a huge distance to travel between now and then, and our son is not yet 22.   We certainly don't expect our community to pick up the pieces if we fail our child.

What we do know, though, is that all of us - mom, dad, sister and brother - have a life here.  The bowling, the library, the music, the Y and more are all part of that.  We expect to grow old here, and we assume that Tom will live with or near us as we get older.  We expect that he will continue to grow as a local volunteer, employee, artist, and adult learner.  Just as we will.  We have plans and ideas for "when we're gone," though those plans are (like all of life) subject to change.

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