05 February 2008

Autism and the transition to adulthood – Whose life is it, anyway?

Today is an election day here in the U.S. The ability to participate in our government is one of the key transition points from adolescence to adulthood, but just one of many transitions that teens – and their parents – must make. For autistic teens, and their parents, this transition brings with it some unique challenges and considerations.

Over the past several years, I've written several pieces on this subject. In keeping with the spirit of the day and what it represents, it seems appropriate to repost this one.

I originally posted Whose life is it anyway? Thoughts on guardianship, autism, and growing old on 03 March 2006:

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As part of planning for the future, parents of autistic kids must consider many things. Key among them is this question of guardianship.

When a child in the United States turns 18 they are considered an adult, their own person. They can vote, they can enter into legally binding contracts, they can join the military (and if they are male they must
register with selective service), etc. In order to rescind this legal right, parents must petition the courts and establish alternative guardianship. Obviously, not a decision to be made lightly.

On the other end of the age spectrum, adult children often must make care decisions for their aging parents. Many times this results in these elderly parents living out their final days in a nursing home, with every aspect of their lives controlled by the administrators of the home. Again, not a decision to be made lightly. (I think we've all heard the horror stories.)

The film Almost Home, recently aired on PBS, talks about a different kind of way to run a nursing home.

ALMOST HOME offers an inside look at the lives of these residents, their families and those who care for them as each adjusts to the challenges of growing older. ALMOST HOME filmmakers Brad Lichtenstein and Lisa Gildehaus introduce couples bonded and divided by disability, children torn between caring for their dependent parents and their own families, nursing assistants doing difficult work for near-poverty wages and visionary nursing home director John George, who is committed to transforming his century-old hospital-like institution into a true home.

Under George's leadership, Saint John's On The Lake is reinventing its 135-year-old medical model of care (think hospital) with a social one (think home). His goal is to transform the way people see nursing homes—not as institutions of boredom and despair but as vibrant communities where residents live rich and fulfilling lives. To succeed, he will have to win over skeptical managers, resistant nurses, overworked and underpaid nursing assistants, complacent residents and often-overwhelmed family members.

The key change in my mind is that the residents here retain as much control as possible of their own lives. They can wake up when they want to, instead of the usual scheduled wake-ups. Meals are tailored as much as possible to what the residents desire, not a typical bland hospital menu. (If someone has lived a good 90 years, and wants some bacon for breakfast, they should be able to get bacon for breakfast!) They have a cocktail hour every Monday where *gasp* they can drink cocktails.

Whose life is it to live? It is the individual's, of course. But, as the parent of an autistic teenager, that is somewhat easier to say than to act on. Any thoughts from autistic adults (several of whom I've recently gained as readers) or parents of autistic adults that have already gone through this are greatly appreciated.

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abfh said...

Brett, I am curious as to how your views on guardianship have changed since you originally posted this article. What effect has reading autistic adults' blogs over the past two years had on your perspective?

I wrote a post last year, The Freedom to Make Mistakes, on civil rights and the guardianship issue. Many autistic adults and others commented on it.

Brett said...


In principle, my views have not changed - guardianship should be a tool of last resort, not the default going in position.

In practice, my thoughts have evolved from that initial bit of concern and (yes, I'll say it) fear of what the future would hold. I remember your post from last year and couldn't agree more. In fact, I was thinking many of those same thoughts when I was reading John Robison's book "Look Me in the Eye" a couple of weeks ago.

I think part of the challenge for parents of autistic children today is that we do know more about it, that we do spend more time with our kids in general. Maybe this is good, maybe this is bad. But either way, it makes it that much harder to "let go" when the time comes. (The media messages along the lines of "your kid will need support forever" surely don't help.)

So to answer your question, reading the blogs (and books) of autistic adults has had a very positive effect on my perspective, and I have high hopes for my son when he ventures out into the world.

abfh said...

Thanks Brett. I agree that today's parents are more concerned because they spend so much time helping their kids to navigate a world that is much more complex than the one they grew up in; and I'd say that is true of parents in general, not just parents of autistic kids.