Wednesday, August 26, 2009

What an Autism Organization Should Be?

Sullivan, over on LBRB, recently blogged about a new program targeting autistic adults at Boston's MGH hospital. This program has been made possible by a generous endowment from the Nancy Lurie Marks Family Foundation. According to the article,

Her (Nancy Lurie Marks) gift to Mass. General will pay for a range of new specialists and programs, including an electronic patient data repository for research, adult neurologists, social workers to help adults find work and housing, and a communication program to evaluate children and adults for devices such as computers that produce speech when a patient types on a keyboard. Bauman, who founded the hospital’s multidisciplinary LADDERS program for children with autism, will become the MGH Distinguished Scholar in Autism, an endowed position, as part of the gift.

I had never heard of this foundation before, so I went to their website. There I found that the organization had been around since 1977, and according to the "About NLMF" section,

The primary mission of the Nancy Lurie Marks (NLM) Family Foundation is to help people with autism lead fulfilling and rewarding lives. The Foundation is committed to understanding autism from a scientific perspective, increasing opportunities and services available to the autism community and educating the public about autism.

When they're not supporting research and services to autistic individuals, the foundation has also sponsored documentaries such as "Autism is a World" and "Voices of Vision: Quality of Life for People with Disabilities: Equity, Opportunity and Inclusion".

Now, this organization probably isn't perfect. Not everyone would be in favor of everything they do. Some of their research money supports genetic investigations, and some of their money has gone to support investigations using ABA type therapy. But in going through their website, what is notable is what is NOT there. No movies moaning how horrible living with someone with autism is. And no hedging regarding vaccines, mercury, or whatever other voodoo people want to ascribe autism to.

In fact, the overall impression I get from reading through the Nancy Lurie Marks Family Foundation website is that we've regressed as a society since 1977. Because evidently back then people set up foundations that respected individuals and wanted to work to help them succeed, as opposed to more recent times when people set up organizations to create "awareness" of how miserable autistics' lives are, and to support all of the non-scientific voodoo out there to "cure" autism.


kathleen said...

I so agree with you on the regression of things..I feel very badly for parents of newly diagnosed children these days. It doesn't seem as if popular media, in discussing autism ever talks about hope, or joy, or love...just tragedy. I often wonder about that-what purpose this serves..if any

Sullivan said...

I feel the same way. I too didn't know about them. I too think they are showing a great example.

I wonder why we don't hear from them more?

From the little I know of them, if they make any more "seats at the table" on the IACC, this group should get it.

Club 166 said...

For all their largesse, it does appear that, by design, they are a group focused on making change in the North East portion of the US (Boston, Connecticutt).

I sure would rather have them as a national group than many others, though.


Autism symptoms said...

Autism is a serious one. It is a neurological development disorder for which there is no cure. Children with autism may have discrepancy in behavioural, communication and social interaction skills. Anxiety and depression also set in with these sufferers. The solution is early diagnosis which is difficult. Training for teachers and parents, autism specific child care centres and playgroups is the key step towards tackling this problem.

laurentius rex said...

That being so, maybe, but they still have not got it.

They are patronizing, they are pathologising they still miss the core message, that autism is a created disability, that it's conception and progress has been in the hands of people who have been at best misguided and at worst malicious.

Autism belongs in the centre of society not in it's fringes.

We are not a seperate nation so much as an exiled minority from the mainland.

We don't belong in hospitals, to be anatomised by career researchers or any of this bull.

Club 166 said...

Thanks for the comments, Larry.

I resisted getting a diagnosis for my son for some months, simply because I thought it might result in more discrimination from the outside world, and might end up holding him back in the end. I changed my mind when it became apparent that having a diagnosis was the only way he was going to get any accommodations or assistance. In an ideal world a diagnosis wouldn't be necessary, but I don't live there.

As far as pathologizing by this group, from what I've seen they seem to have at least a LOT less than other prominent national US "autism" groups. Absent a teleporter to instantly transport us from point A to point B, journeys are usually made in steps. I see their model (and attitudes) as being a giant step towards where I would like to see autism groups go. I agree they're not perfect, but they're light years away from some other groups.

Finally, although the construct of the definition of autism is fairly artificial, I think that it is real, and does constitute a disability.

Thanks again for your thoughtful comments.