Adult decisions
It’s hard to overstate how little we know about adults with autism. Their typical profile of symptoms, brain connectivity, response to drug and behavioral treatments, and even life expectancy are all unknown. Just two things are certain: Many adults with autism exist, and few are able to live independently.
With so many gaps in our knowledge of adults with autism, where should research begin?
A list of top priorities appears in the November issue of the Journal of the American Geriatrics Society. The report summarizes a meeting of the Autism-in-Older-Adults Working Group, which met in Chapel Hill, North Carolina, in March 2010.
There have been a few rigorous studies on adults with autism in the past year. For example, in May, researchers in England published the first study of adult prevalence, finding a rate of about one percent, the same as that of children with the disorder. Up to three-quarters of these adults don’t have jobs and, according to a June study, even those with normal intelligence and language skills are not likely to marry or find work.
This is a major economic and public health issue, as an editorial published 9 December in Autism Research points out. Lifetime direct and indirect costs of a person with autism come to $3.16 million — and that doesn’t include costs accrued after age 60. If the life expectancy of these adults is the same as that of healthy people, then some 700,000 individuals with autism aged 65 or older will need care over the next 20 years.
In the new report, the working group recommends six areas where study is most needed. First, researchers must design diagnostic tests tailored for adults, because most existing options rely on information — such as the age at which they spoke their first word — that makes sense only for children.
Once appropriate tests exist, the report suggests, researchers should study the common symptoms, co-occurring medical conditions and living situations, and conduct longitudinal studies of how each of these changes over time.
They should also conduct brain imaging and genetic studies of adults with autism and compare them to those of children with the disorder to see whether, and how, the brain compensates over time. They could also explore this in various rodent models of autism by allowing the animals to age a few years.
The final two recommendations are likely to have the most immediate impact on adults with autism.
One is to study whether treatments that have some effect on children — such as prescription drugs or behavioral interventions — have similar benefits for adults.
On the other hand, certain drugs found to be ineffective in children with autism may benefit adults with the disorder. A study published 2 December, for example, found that the antidepressant Prozac improves symptoms in adults with autism, even though the drug has no effect on children with the disorder.
Finally, the report points out that researchers must speak out about the need for studies of adults with autism in order to inspire young scientists. It seems like a fantastic area for someone just launching a career: a field with many open questions, scant competition and clinical relevance that is only likely to expand with time.
Comments
Thanks for the reporting on adults with autism. SFARI posts THE best articles on autism! I look forward to the day where there will be a spectrum of opportunities for young adults transitioning out of formal schooling-be it high school or university. We also need applied research on the best vocational and housing practices and what will give the best ROI on this nation's limited resources. At Aspiritech, we are creating a vocational model that we believe could be replicated to provide higher functioning adults with training and employment in software testing and related IT work. This is work that harnesses their strengths. Unforseen value added consequences have included building a "community" as well as seeing increased teamwork and lowered incidences of anxiety and depression. But it is tough in this economy to foresee expansion without stronger governmental/philanthropic support.
While I usually admire your writing, Ms. Hughes, this article had two features that annoyed me.
One: "Lifetime direct and indirect costs of a person with autism come to $3.16 million" -- you quoted that estimate from Ganz as it it were fact.
You might be interested in two discussions problems with Ganz's estimates, both by autistic adults:
Michelle Dawson,"Revisiting the Costs of Autism" http://autismcrisis.blogspot.com/2009/02/revisiting-costs-of-autism.html
and
Joseph "Debunking the Costs of Autism" http://autismnaturalvariation.blogspot.com/2006/11/debunking-costs-of-autism.html
Two: "If the life expectancy of these adults is the same as that of healthy people," I object to the phrasing. Autism isn't a state of ill health or sickness, it's a neurological variation.
If you had phrased it as "If the life expectancy of autistic adults is the same as that of non-autistic people," your piece would be more accurate, as well as non-disparaging.
Hi Liz,
I used that cost figure because that's what they quoted in the article. I wasn't aware of the controversy behind the numbers, so thanks for pointing me to these posts!
I agree with your second point as well. I certainly did not intend to be disparaging, and using the word 'healthy' was an oversight on my part.
Thanks for reading SFARI.
Both autists mentioned by Liz Ditz have agendas that make them less than objective when discussing costs of autism, and Joseph's blog has absolutely no facts to back it up. It's a 5 year old opinion blog by an autist who objects to people even discussing the "costs of autism" that consists of him crunching whatever numbers he can come up with off the top of his head, and doubting the numbers done by actual researchers because "He really doubts people really spend that kind of money on average." I'm really disappointed that the people from Thinking Persons Guide to Autism insist on bringing it up so often lately.
I misremembered the following as being from Joseph (in the comments at the Dawson piece). It's not, it was written by Mike Stanton:
"It is well worth revisiting the costs of autism. I have yet to see a satisfactory explanation of the disparity between Ganz's $3.2 million lifetime costs for autism and the much lower figures from the CDC for mental retardation ($1,014,000), cerebral palsy ($921,000), hearing loss ($383,000)and visual impairment ($601,000)"
Source: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5532a5.htm
Sorry -- the previous comment was from me.
Thank you for shining some light on the dearth of research on autistic adults!
We are currently conducting research and developing programs regarding adults with autism. Find out about Towson University's Center for Adults with Autism here:
http://www.towson.edu/chp/caasd
<One is to study whether treatments that have some effect on children — such as prescription drugs or behavioral interventions — have similar benefits for adults.>
My son was diagnosed with High Functioning Autism (still don't care for that particular "label") and has had success with ongoing treatment involving prescription drugs AND behavioral intervention since he was 4 1/2.
What anyone diagnosed on the spectrum would need is a good team of support that includes a psychiatrist (meds), psychologist (emotional) and behaviorist (social) working together. I've found, as my son has matured, that we could slowly drop the Speech and OT, but continue to need the support structure enabling him to cope with day-to-day living and the challenges that arise with finding his way in the world as an adult (he's in his second year of community college).
While Behavior support is provided through a state Regional Center here in California, they operate on a 3-month contract renewal cycle. I try to explain to them (and the Regional Center) that this type of service is ongoing, fluid and needs change as he progresses. Things come up that require step-by-step planning for him that a typical person would figure out innately.
It’s interesting to watch this journey, too. He has his own way of “understanding” that we need to “rewire” sometimes before even starting a behavior plan. Unless he sees a “rational (in his mind) reason” for doing something – he just won’t do it. It has to be explained and justified as a benefit to his well-being before he “buys in” to the therapy.
Another thing I’ve realized with the behavior intervention is that I’ve had to change MY behavior as well in regards to how I interact with him. We all have “scripts” we use and some need to be tossed out because they don’t work. Society needs to change how people with autism are viewed. We all need to be more understanding and accepting. Why do they have to do all the heavy lifting? It is stressful enough for them to “cope” in our world. Why aren’t we doing more to help them live with us in it?
People’s definitions of “moderate to severe” get a wake-up call when viewing the YouTube video made by Amanda Baggs. Link here: http://www.youtube.com/watch?v=JnylM1hI2jc
No one really KNOWS what’s going on in the mind of a person with moderate to severe autism. Amanda would’ve been diagnosed as severely retarded in the past. This video shows that she is articulate and aware. We, as a society, must be more flexible as well – we demand it of these people so it’s only reasonable we try to meet them half way instead of labeling them and discounting their potential contributions to society.
There is a lot of speculation and even hard evidence to support Amanda Baggs is not autistic, but rather has a mental illness. THere are videos of her perfectly fine in her teens. There is evidence posted about her real background where she is found to have done a lot of drugs. Some people acquire brain damage when doing drugs. There are studies supporting this. Her brain damage may be acquired from drug use and thus, she now exhibits autistic like behaviors, but is certainly not autistic. There is a great deal of misinformation about what real autism is. Amanda Baggs is not autistic. Nor is Donna Williams, who has admitted to being diagnosed with multiple personality disorder, one in which apparently believes she's autistic. Very interesting.