I am both encouraged and saddened by this recent paper. Encouraged that someone is taking up the topic of aging and autism. Saddened because there is very little work out there so far. The paper is from the MRC Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, King’s College London, London, UK.
This article addresses an important and barely researched topic: what happens to children with autism spectrum disorders when they grow old. We review the small published literature on aging in autism. We then consider the relevance of research on ‘neurotypical’ aging in core domains of autistic impairment: social cognition, executive function, cognitive style and memory. Research themes from the study of normal aging, including cognitive reserve, compensation, quality of life, loneliness and physical health are of relevance for future research on autism. Studies of aging in autism will be important not only to plan appropriate services, but also to shed light on the full developmental trajectory of this neurodevelopmental condition, and perhaps provide clues to neuropathology and etiology.
“barely researched topic”
I hope that (and lobby for) a change in this. I will not be here to support my child through old age. Even if I were, I could really use some help in understanding what is going on.
Left Brain Right Brain 
I read this with interest too. It gave me some reassurance for my sons future. Of course, like all of us with children on the spectrum my greatest fear is who will look out for him after my demise. Increasing focus on the requirements of older people with ASD is well over due.
Thanks for this. Currently, developing a local research proposal on just this topic.
[LBRB say] Saddened because there is very little work out there so far.
COMMENT
indeed orders of magnitude too little and for many too late…”barely researched”…is research or support the priority…
also;
very little work on quality programs/support for adults. very little work on autism intelligence…eg, the innate ability many/most/all on the spectrum have to learn without a formal education…
tho needed there’s a disproportionate use of time, energy, funding, on cause/cure debates and research…eg;
pro/cons VAX debates…some advocacy groups organized for this specific debate…or spend most of their efforts on this issue.
sad…
stanley seigler
I have worked with the same group of adults with (severe) autism for the past 30 years. What I have observed is that their special interests have remained about the same; their maladaptive behaviors have been successfully decreased or eliminated through ABA methods; and their quality of life is directly related to the quality of the people who support them and the presence or absence of people in their life who are NOT paid to be there. My advice for the future of younger folks with autism is to focus your energy on developing a circle of support for them and to help them acquire as many social skills as possible (smiling, occupying own time, etc.) so people will WANT to spend time with them. Hope this helps… Feel free to e-mail me if you want to talk more.
[Krysti DeZonia (KD) say] their maladaptive behaviors have been successfully decreased or eliminated through ABA methods…
my experience/observation (with my daughter and 20-30 some of her peers) as a parent for 46 years is similar to Krysti DeZonia’s…weel almost.
love, acceptance and maturity contribute more than ABA to decreased maladaptive behaviors…and quality of life…tho;
“miles to go…”
agree with ms dawson re autism-ABA promotional science claims. http://www.sentex.net/~nexus23/naa_aba.html
observational science (seeing is believing): daughter’s peers (who will always need 24/7, 1:1 support) who had gentle ABA (not 40 intense hrs/wk) seem more content than the ABAers…and are as functional.
hard to talk anecdotally, generally, when there are many autism subsets…ie, too much apple/orange discussions/disagreements…science makes the same mistakes when it generalizes a study conclusion.
[KD say] Hope this helps…
also KD’s blog might help: http://www.qandawithdrk.com/blog/2011/5/23/5-tips-for-a-happy-future-for-kids-with-special-needs.html
perhaps more help and a favorite program, microboards: http://www.iambc.org/
[CLIP]
An individual Microboard is an incorporated non-profit association designed to serve just one person. The person who is supported is a core member of the Board of Directors. Trusted friends and family members fill other positions on the Board of Directors and an extended circle of community members provides critical informal support.
History of Microboards
According to an Article by Jackie Holden on Self Directed Support Corporations (SDSC), the history of the Microboard started in the Mid 1980’s, with David and Faye Wetherow in Manitoba, Canada. David and Faye formed the first Microboard around a young man leaving an institutional setting (Microboard and Microboard Association Design, Development and Implementation by David and Faye Wetherow: http://www.communityworks.info). David and Faye were also instrumental in providing the format to maintaining the critical requirements of the Microboard concept. Those critical requirements are:
1. An unencumbered focus on the identity, needs and express wishes of the person who is supported;
2. Development and maintenance of an active, diverse and fully engaged citizen- based circle of support (Board of Directors);
3. Retaining all possible elements of control, especially including the role of employer-of-record
http://www.pamicroboardassociation.org/Home/History
ohand, who looks after my daughter when…
stanley seigler
ps. tho in many cases 24/7, 1:1, support (friends) needed…very few get it.
Krysti: on the money.
Microboards: interesting. An incorporated circle of support! Incorporation would undoubtedly contribute legitimacy to the group… helpful when interacting with “professionals” who ALWAYS know so much more than anyone else (not).
Finally: Eden at Princeton NJ has been working with geriatric populations for about two decades… they have published lit, suggest review to anyone interested.