And now for something completely different.And not Monty Python related, either. Recently, I became aware that there are many autistics who vehemently oppose the intent and efforts of Autism Speaks. This surpises me in two ways:
1) that an advocacy organization could be hated by the population is supposedly serves, and
2) I hear pain and anger. I don't know why, but I was surprised to hear phrases like "leading advocacy organization that does not support the needs of the people it claims to represent," "sensationalistic descriptions of autism that frighten and misinform the general public," "they spend much of their funds to research prenatal testing that would prevent more autistic people like me from being born." The pain and anger is not directed towards being autistic, but towards others' reactions to autism.
The vibe I got from the posts I read was similar to the deaf community that resents the perception that deafness needs to be fixed.
Certainly there are many functioning autistic people who contribute to society in unique and wonderful ways. But do we *not* try to prevent autism, which can also be terribly debilitating, not only for the person who has it, but for their entire family?
Absolutely, services could be better. That's the understatement of the century. Services, funding and public understanding for autism are the pits.
I'll have to ask my brother if he would rather be autistic, nor not autistic. Never thought to wonder that before....
1) that an advocacy organization could be hated by the population is supposedly serves, and
2) I hear pain and anger. I don't know why, but I was surprised to hear phrases like "leading advocacy organization that does not support the needs of the people it claims to represent," "sensationalistic descriptions of autism that frighten and misinform the general public," "they spend much of their funds to research prenatal testing that would prevent more autistic people like me from being born." The pain and anger is not directed towards being autistic, but towards others' reactions to autism.
The vibe I got from the posts I read was similar to the deaf community that resents the perception that deafness needs to be fixed.
Certainly there are many functioning autistic people who contribute to society in unique and wonderful ways. But do we *not* try to prevent autism, which can also be terribly debilitating, not only for the person who has it, but for their entire family?
Absolutely, services could be better. That's the understatement of the century. Services, funding and public understanding for autism are the pits.
I'll have to ask my brother if he would rather be autistic, nor not autistic. Never thought to wonder that before....
1 comment:
Sally-I am so far out of the loop of autism, I was not even aware of the fact that there are people with autism who are now in opposition to Autism Speaks, and the other points you made in your blog. Guess I need to do some research. May call you sometime soon. I feel anxiety runs in this family, whether through the genes or by modeling/example (I'm not sure, maybe through both paths), but I am still in favor of not-Big Pharma solutions to it (although your brother with autism takes his daily dose of pharmaceuticals for his anxiety (his biggest crippler, I feel, a component of his OCD. I completely agree with you about the Chicken Little fable. It's interesting to come across the version of the story that allows Chicken Little to survive a while longer (never had heard that one before). I am hugely heartened by EFT in its ability to clear stress out of one's body. We'll have to talk.
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