Trigger Warning: Discussion of potential genocide of Autistic people, slight mentions of bullying
Although I just posted that I find typing tedious, in light of the recent events that Autism $peaks put two token Autistics on their board (it sure seems like that to me, only time will tell what their true intentions are), and what I have read in this article on The Art of Autism (http://the-art-of-autism.com/stephen-shore-talks-about-his-appointment-to-the-autism-speaks-board-of-directors/), I thought I would give my two cents on my initial reactions to stuff like this. I just felt COMPELLED to type.
I cringe when I hear or read the words “autism research.” To me, I associate these words with “studying Autistic genetics with the intent of eliminating Autistic people from the face of the Earth” and “making Autistic behaviors indistinguishable from NT behavior.” Enough of these unethical tracks of research. The other day I stimmed in public for the first time without giving a damn and it felt good. I was with my parents, so I wasn’t overly anxious. Although it wasn’t highly visible (I rubbed my thumbs together in a twiddling fashion), I felt like I stood in defiance of everyone around me. That’s a start. If I were more anxious, I would have probably stimmed more overtly, such as flapping my hands. I wouldn’t have cared. I’m tired of hiding who I am.
I know there are things that autism research does that don’t have the goals or curing/eradicating us or normalizing us in mind, such as mitigation of debilitating comorbid conditions, like certain sensory issues (fluorescent lights are my number one bane, which will be mitigated with tinted lenses very soon). After enduring years of bullying, abuse, etc. I have had enough of people telling me that there’s something wrong with me. I’m a human being and I deserve to exist. So do the Autistic people I have met and communicated with over the course of time I’ve been on social media.
Thus, the words “I shouldn’t cringe, but I do.”
It’s much more cost effective to give nonverbal Autistic people a way to communicate and mitigate debilitating comorbid conditions than waste all that money studying our genetics and looking for a cause.
Oh, and to any frustrated parent of an Autistic child who happens to read this: I acknowledge your feelings of frustration. I have no idea what it’s like to be anxious in the face of self-destructive behaviors. I will make a deal with you. I won’t call any of you insulting names like Curebie if you don’t lash out at me or other self-advocating Autistic adults with phrases such as “You’re not like my child!” or “You have no idea!” Finding a way to communicate with your child and mitigate anything like sensory issues, self-destructive behavior, etc. is very important. Read the sources below if you already haven’t, as I am new to self-advocating. I plan to learn much more about nonverbal Autistics in the future.
http://juststimming.wordpress.com/2011/08/23/dear-autism-parents/ – Dear “Autism Parents”, by Julia Bascom
http://www.autistichoya.com/2012/03/letter-to-parents-of-autistic-children.html – Letter to the parents of Autistic children, by Lydia Brown
EDIT TO ADD: The Autism Wars by Kerima Çevik
Many thanks to Lydia Brown for links on her Primer Page: http://www.autistichoya.com/p/resources.html
That’s all for now.