Help wanted: Asperger’s/Autism resources
I’ve been thinking for a while that I should address the issue of Asperger’s/Autism/etc in the geek community, and a recent linkfrom the Asperger community on LJ reminded me of it. Thing is, I don’t know much about the subject. Can anyone point me in the direction of some good resources, hook me up with someone knowledgeable, etc?
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My son is on the Autistic Spectrum and a great resource is http://www.autismspeaks.org. I believe http://www.autism-society.org is also a good resource.
There are many levels of autism and Aspergers is on the high functioning level of the spectrum. I know a lot about the disorder and its manifications but I would rather talk than write about it. Fortunately my son who is nine years old, is considered high functioning. He has difficulty with expressive language and with motor planning skills. If you would like to talk about it, please visit my website and call me.
I can’t speak on behalf of the LJ community - heck, I just joined it recently. That said, I think you should be asking in the LJ community for help on this. Some (many?) in the community speak ill of Autism Speaks and any organization that talks about “curing” Autism.
See here, for example:
http://community.livejournal.com/asperger/1568328.html
http://community.livejournal.com/asperger/1561533.html
http://community.livejournal.com/asperger/1545736.html
There have been “cures” of autism spurned behavior. My son has gone from mid spectrum - or otherwords more severe autistic behaviors to being a child you would never guess has the disorder. I applaud Autism Speaks for their ability and doggedness in getting recognition for a common disorder that the public hardly recognized. Any group which can get the word out in the national media has my support. The therapies are long, difficult and very expensive. We have spent over $65,000 per year on our son’s therapies since he was 18 months old. Insurance pays nothing!!! But he reads, does math,science and writes at grade level. He is polite, sweet, empathetic, hardworking and a pleasure to all who know him.
The best thing everybody can do is to learn about the disorder of autism and then lend their patience and support to the caregivers who fight for their children’s way to a life that is manageable and fulfilling.
The problem with talking about “curing” Autism is that it implies that Autism is all bad.
I mean, in my case: yes, I’ve been diagnosed (only recently) with Asperger’s Syndrome. Yes, I’ve had terrible difficulties with social interaction. And my weaknesses in mathematics are stuff of legend. But on the other hand, I’ve always been rather exceptional with reading, writing, and technology.
So I personally reject the idea of a “cure.” I embrace education. If I had received more appropriate education (and protection from my “neurotypical” peers) in my K-12 days, I might be better off than I am now. But I’m OK with having Asperger’s Syndrome. It’s part of who I am.
OK, everyone, can we please not argue over whether Autism is curable here? It’s off-topic for Geek Etiquette.
I’m still interested in resources on Autism/Aspergers and how people with those conditions interact with others, however.
I apologize if you feel like I/we hijacked your blog. I am simply advising that you select your resources carefully, and I again encourage you to ask in the LiveJournal community.
Thanks, Spekkio, I will do that.
“A survival guide for people with asperger syndrome” was written by a very smart aspie 10+ years ago. It’s meant to be a guide on how to fit into the non-autistic world.
Unfortunately he then committed suicide due to the stress of doing so rather than just being himself.
Be sure to have a look at the follow up wikibook which is linked to at the top and the bottom of the page.
http://www.autismandcomputing.org.uk/marc2.en.html
Creddy, that looks like a great resource… but the suicide thing is a bit offputting/disturbing :-/