Caregivers worry: Will rise in adults with autism swamp system?
June 29th, 2009From the Sacramento Bee:
Parents and disability advocates say they’re worried about the tidal wave of young people with autism who are moving toward adulthood in a society unprepared to meet their needs.
Nationally, it is estimated that some 380,000 people will need extensive adult autism services by 2023, and the pricetag for their care will be in the billions of dollars.
“The financial impact will be huge,” said Dr. Robert Hendren, director of the UC Davis M.I.N.D. Institute. “Many, many people will be living impaired lives, and where are they going to go? Who will take care of them? The challenge will fall largely to family members. As those parents age, they are asking, ‘Who is going to take care of my autistic child after I am gone?’”
See also: Book review of ‘Boy Alone’, by Karl Taro Greenfeld — Paul Collins in the [Portland] Oregonian. An excerpt:
Society makes some strange demands upon autism. We expect a cure: something you rarely hear mentioned next to conditions like Down syndrome or retardation. For them, a sensible emphasis has been placed upon prevention in the future, and respite and amelioration in the present. But with its wide spectrum of abilities and its murky genetic origins, we demand breakthroughs from autism. There are Hollywood galas to cure autism in kids, but try hosting one for more adult residential beds and better toilet training and watch those red carpets get rolled right up…
… “Boy Alone” reminds us that not all stories can have happy endings. Sometimes we must leave aside childish demands for quick fixes and swelling music, and recognize that we cannot turn away from providing for the unpleasant and thankless demands that even families and charity cannot handle. There’s no glory or gratitude in funding long-term studies of severely autistic adults, or in better regulating their daily conditions in institutions. That’s all the more reason a book like Greenfeld’s — a harsh rebuke to our worst tendencies in sentimentalizing disability — remains so important.
“We don’t have the programs. We don’t have the research,” said Dr. Robert Hendren, director of the UC Davis M.I.N.D. Institute. “We have this very large adult population of autistics coming along, and we don’t know how to deal with them. We just haven’t come to terms with it.”
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June 30th, 2009 at 9:48 pm
“For them, a sensible emphasis has been placed upon prevention in the future, and respite and amelioration in the present.”
What a truly chilling statement. Not even sure I can wrap my brain around a reply to that. Let me say this, at least: my life contains a hell of a lot more than “respite and amelioration”. My daughter just turned three. We felt “sensible” when we opted not to do any prenatal screening or testing, figuring life has no guarantees, and there are a lot of other things that can happen that we can’t test for (yet??).
We live a good life, and my daughter’s Down syndrome has opened us up to a whole universe of people and thoughts we might never have had the opportunity to experience. Yes, there are challenges, of course, but there is also a lot of life that is just the way I would wish for it to be.
June 30th, 2009 at 1:33 pm
Pretty scary stuff. Hopefully we’ll be able to do more than just throw galas for the many children with autism who are now becoming adults.