What About My Disease? (ABC News)

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What About My Disease?
While Autism Attracts Research Money, Other Diseases Struggle for Funding

By SUSAN DONALDSON JAMES
Nov. 1, 2007

Some are calling autism the "disease du jour," and its fundraising coffers have the dollars to prove it.

The Autism Society of America has seen its budget grow to $20 million, and a new advocacy group -- Autism Speaks -- raised more than $33 million in its first year of operation in 2006. It expects to raise that to $50 million this year.

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I knew I should have bought Autism stock before it ballooned! I feel so trendy now with my fashionable autie kids as my accessories.

That cure money messes with parents' heads. They go to conferences and seem to put all their eggs into the cure basket and don't imagine anything in their future but a cured kid. It's big money for the drug companies and researchers and a distraction from real life problems of people on the autism spectrum.

There was a bill billboard on our freeway that said "Autism steals a child every 20 minutes." My kids are safely at home, still there, not stolen.

I don't think I've been stolen. I'll double check.

EDIT: Nope, I'm right where I left me.

I too am right where I left me. I don't feel stolen at all. My son was stolen....but by his dad and an as*hole judge....so I'm not sure he counts. Besides, if you listen to my ex, he's cured my son of autism.

I was once told that I couldn't understand the anguish and true tragedy of autism because my son was too high functioning. As if I didn't go through all the same steps to get the dx. I mean, how anguishing is it to go through life for almost 40 years thinking that there might be something so truly deviant about you that you should hide behind anti depressants and group therapy just to know you're alive. How anguishing to watch your child struggle through 15 years of trying to gain just a little ground like the other kids. How anguishing is it for me to go through court hearings listening to my ex husband and the judge berate me because I had my son labeled on the spectrum, supposedly to fit my own sick Munchausen by Proxy standards. As if with my incredible IQ I couldn't think of something better to get attention than autism. Boy, it's really getting me a lot of attention because my kid's autistic. I truly feel special now. (For those of you who missed the subtlety...that was SARCASM.)

Sorry....went off on a tangent there, didn't I. I should learn to use my inside voice more often.

I'm right where I left me also, unfortunately. 8(

The autism speaks people, and their ilk, are the EPITOME of all I hate!

1. IDIOTS!
2. They learn only enough to pass themselves off as experts to ones that really know very little.
3. They make money claiming they help, when they really hurt.
4. They strive to promote ignorance and rumor, rather than knowledge.
5. They readily take praise even for other peoples accomplishments.
6. They may even get awards even at the expense of just recipients!

In other words, they are WORSE than snake oil salesmen:

http://www.abc.net.au/health/consumergu ... 837021.htm

disease?

I'm not even gonna get started on my rant about Autism Speaks, because I'll never stop. It's my mission in life to make people aware of autism in a different way. I have ordered one of those "gettingthetruthout.org" bumper stickers so that possibly the public can see a different view of autism then what autism speaks, CAN, and sometimes ASA puts out there.
One other thing, who proofread that article? It has huge errors in the first few sentences.

OKAY, WHO STOLE ME?!

My local AS group is doing a walk with Autism Speaks over here soon.

Can we all put together an article for Oprah's magazine clearly explaining the harm that these cure people do? Maybe collect anadotes about ruined lives.

One example I have is a mother who called me and said that she is trapped in a lonely life with her grown autie son. She doesn't know what to do now. She can't take him anywhere. She has little money to pay for someone to help her. She said when her son was a little kid, she had lots of other parents as friends. They all boneded at cure lectures and conferences and faith ih the future that they would have normal kids.

No real vision or guidence for the real future heading for her and her son like a speeding train. Now she doesn't know what to do. And it's her son who is the real victim of those cure freaks.