I got diagnosed...and I have a question

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First of all, I'm relieved to have gotten an Aspergers diagnosis last night. I naturally have a few mixed feelings about this, but I was so certain that I had it that I've already mostly accepted it.

Anyway, I've been wondering about "Autism Speaks" lately. I understand that they're somewhat controversial within the autism community, but I honestly don't know anything about them, and I'm wondering why. If anyone could give me a relatively brief explanation for that, I'd appreciate it!

Well, for one, Autism Speaks doesn't actually let autistic people speak. If they have a meeting of some sort, they will not allow autistic people to speak. Second, they have no autistic people on their board. So, it's just a bunch of people who have no first hand experience with autism thinking they can speak for us. It also advocates pre-natal testing, so that autistic babies can be murdered before they are even born. They also spend all of their resources on trying to cure it (either medically or through eugenics) and devote no resources to helping adults on the spectrum. It's mostly an organization for NT parents who want to whine about the horror of having an autistic child rather than one that wants to help people who have to live with the condition. They have also sued autistic people who have dared to use their name by stating things to the effect of "Autism Speaks doesn't speak for me. I have autism and I can speak for myself." on a tee shirt, bumper sticker, etc.

I'm curious. The American Diabetic Association pretty much speaks for diabetics everywhere. The American Heart Association represents those with heart disease and strokes. Who speaks us spectrumites? Autism Speaks. Judging from outofplace's description, I'd think not since they don't give a toss about adults. I did write to them months ago about adult issues but haven't heard back yet. I wonder why.

They get enormous funding
pay their CEO's and staff top$$
Madison ave address I think

Employ nor represent autistics in any way
Rude and discriminatory media aimed toward autistics

There are two kinds of organisations - those formed by people with a condition ("insiders"), and those formed by parents or professionals about a condition ("outsiders"). WrongPlanet and various other organisations (ASAN, GRASP) are "insider" organisations - they were set up by and for people on the spectrum. Of course, WP also has forums for parents, etc, but the core of WP is an online community of people on the spectrum.

Autism Speaks is definitely an "outsiders" organisation. It was founded by the wealthy grandparents of someone on the spectrum. A problem with "outsider" groups is that they can easily mirror and even amplify the general society's discriminatory and alarmist ideas and attitudes about the condition - a form of discrimination known as "ableism". For example, "outsider" organisations can easily play up how "terrible" the condition is, in order (among other things) to attract funding and because autism is something foreign to them (they don't understand how one can like being on the spectrum, for example). Outsider organisations can spread the idea that having the condition is a terrible burden on society, it is a fate worse than death, it leaves children with a soul, etc, etc. They tend to fund research into the causes, detection, and eradication of autism, rather than research into programs that would help younger and older people on the spectrum meets their goals in life (e.g. finding employment, relationships, education).

"Outsider" organisations may especially reflect the experiences of parents and families, intermixed with ableism, where the person on the spectrum has comorbid issues (like intellectual disability, mutism, gastro-intestinal problems, sensory sensitivity, etc). So the parents will complain that so-called "higher functioning" people on the spectrum don't really understand how difficult the families can find having someone with "low functioning" autism. "Outsider" and "insider" groups can easily end up in a war of "my suffering is worse than yours". After all, many people on the spectrum see their condition as a mixture of positives and negatives, and are no more desperate for the complete elimination of their condition ("cure") than (say) someone who has been blind all their life. Just because you are blind or on the spectrum, does not mean you live an unhappy or worthless life. To keep hearing autism and Asperger's described by "outsider" organisations as this terrible fate, with terrible consequences for the family, is very denigrating to someone on the spectrum who is proud of their autie or aspie strengths, and their unique perspective on life.

So it is a difficult question. Insider and outsider organisations represent different groups of people with different experiences and (often) different ideologies about the nature and value of neurological disabilities, disorders, and differences. Of course, some parents and families of people on the spectrum are also on the spectrum themselves. And many neurotypical parents can see their child as unique and worthwhile, rather than as "defective" - even if they have to work at understanding the world and experience of someone on the spectrum. It may be possible for insider and outsider groups to work together, although that isn't easy, and quite a few people on both sides will see it as a waste of time.