So, it’s been less than two weeks that I’ve been peeking into this world, and already I’ve met some wonderful and fascinating people. Already, I’ve learned that a large contingency of higher-functioning autistics do not appreciate the way that Autism Speaks, the brand name charity for autism, delegates the funds it raises, how much it pays its executives and the advertising tactics it uses for fundraising. (From my brief study, the favored resource for autism advocacy among autistics and their families is ASAN.) Many autistic adults and teens as well as parents of autistic children are offended by advertising campaigns as well as general attitudes that autism is a disease or something that needs to be cured. Having grown up with or raised a child with autism, these people recognize that the different way an autistic person sees and experiences the world becomes an inextricable part of that person’s personality. To demonize autism itself feels like (and arguably is) an attack on the identities of autistic people themselves.
I have to agree after reading a number of accounts, that comparing autism to a fate worse than death or likening it to being stolen out of one’s own body is offensive. When I read articles like this one about research that could potentially lead to “therapies” that would change the structure or function of an autistic person’s brain, I can see how they would make an older autistic person nervous, not only for him or herself, but for future generations who won’t be old enough to speak for themselves when something like this might be applied.
All that said, I’m not trying to be sensational, and neither are the people whose accounts of this kind of marginalization I’ve read. They are the first to admit that there are autistics (children and adults) who need coping tools, who need therapy for their autism, who need to learn strategies for living in a world mostly filled with non-autistic (I refuse to say “regular,” because there’s really no such thing as a “regular person”) people. So, from what I’ve seen so far, it’s not the autistic community being unreasonable in their thinking. It’s the non-autistic community, and even some who claim to be advocating for autism, who are making questionable claims and inappropriate comparisons about autism.
I’m so glad that I’m starting to enter this world in the manner I’ve chosen, by reaching out to the community first. I would hate to get swept into the wrong approach by choosing to focus only on the academic side of things. That’s not to say that the academic world will necessarily favor the autism-as-a-disease outlook. I have no idea what perspective dominates the academic community focusing on autism, but I’m just happy to be receiving this different kind of education first, so that if and when I do become any type of therapist for children with autism, I’ll be approaching the whole process from the perspective of arming the child with the tools to cope, providing them with the strategies they need to live the best life they can in this world, without stripping them of their childhood or their identity. That’s the model I want to shoot for. May God help me in walking that path.