I wrote this in response to a statement another parent of an Autistic child made. She was just saying how unjust it was that the Asperger population as a whole was overlooked as needing treatment. She was wondering where the MLKs of the Asperger world were. How we could get a grass roots organization going, etc... I wrote this in response:
"My daughter will be turning 9 this month. And, yes, it's difficult for me to watch the social deficits and know I've not the training or experience to clinically help her. Right now my 4 yr old son can only say a few 3 word sentences, if that and all of my resources have gone to him in the form of private therapy. I tried to get my daughter on a 504b, but I guess that's for more physical supports in a classroom. This next year I'm thinking of volunteering at her school and possibly running some kind of social program. I'm thinking like, a social tea at lunch, or even science club.....SOMETHING where I can be over there and watch her interact with her peers. At this point, financially, it's my only option.
As far as Asperger MLKs, (from what I've read) the Asperger community is diverse. There are a lot of outspoken Asperger individuals but most seem to be centered on awareness and acceptance. Which I think is fine, and wonderful and I agree and all that, but I have a daughter who cannot read visual cues, intonations, inferences and other socially aware "norms" and I worry for her future just as a young woman. It's a scary world out there and you need to have street smarts as a woman. For me it's a safety and quality of life issue. All of this seems to get lost in debates. But that is why I think the Asperger community doesn't have one voice. Just because of the diverse opinions regarding "treatment" vs "acceptance' vs "diagnosed levels" and who is considered Asperger and who is not. Some days I find it amazing we can even paint the diagnosis of Autism with such a broad stroke. There are definite characteristics and traits, and yet, all are so very different. It's hard to unify all of that even in my own mind. lol"
Rumor has it that the F.E.A.T. of Oregon collapsed under such debates. I have no idea if this is true or not, but from the little experience I have as a parent of very different Autistic children, I can see how heated debates can easily spark. Parents are stressed out, frustrated, have very little support for themselves and feel very passionate about their children and about the decisions they've made regarding treatment. Also, heated reactions could be a matter of habit since so many of us have to continually argue for therapy with districts, family members or even a spouse or significant other.
So how do parents unify under such diverse circumstances? Many parent organizations have been successfully created and run under such conditions, why do they succeed where others fail? I'm guessing in "the people." Man, I hope I can make this Parent Teacher Organization work.
Two words for how I'm feeling right now as a pro-active parent of an Autistic child......
zoo train.
(Which is actually very nice. The Zoo's train in Portland.)
