Reclaiming Autistic Identity

To give a little more background about my experience growing up autistic- I had been mainstreamed all throughout my schooling- with an aide from 4th grade thru junior high. The aide was mostly there to help me keep calm, or whisk me out of the classroom if I had a meltdown. (Before then, my mother was sometimes called in!) In Northeast Iowa there is a separate agency- the Keystone Area Education Agency. My parents said this had worked really well for them and other parents and their kids for advocacy purposes because it was independent from any one school district. As my dad putting “Having the school district in charge of allocating special education resources is like putting the fox in charge of the henhouse!” When we moved to Minnesota, my brother and I both had personal aides as required parts of our IEPs (though neither of us had them in high school) whereas we knew students with similar labels who were denied that option because the label of Asperger’s in particular was deemed “too mild” to need an aide. (This is one of the reasons the Asperger’s Syndrome label was removed from the new DSM)

My parents explained the labels to us, but we rather rejected them as they mostly sounded so negative, it just seemed like an insult from doctors who thought they knew everything. My parents even held a school assembly to announce our status without our frickin’ permission! (They claimed that students and staff were more accepting as a result, but I still think that was a horrible choice. I’ve forgiven them since then!)

When I had the opportunity to go to Camp Discovery, a summer camp run by the Autism Society of Minnesota for ASD kids ages 10-21, this changed as I got the chance to be around others like myself. One of the biggest things for me was that each cabin had a Mentor, an adult with ASD who working there. Ruth-Elaine was the one in my cabin. This was incredible! I had grown up with an autism community that only acknowledged as us non-verbal 5 year olds that were seen as a “terrible burden” and “tragedy” (with of course parents rushing to reassure listeners that of course they still loved their child) The only person with autism that had, apparently managed to reach adulthood was Temple Grandin. These are still obnoxious tendencies that I encounter, but things have changed a lot!

Anyhow, after attending camp my view of autism changed. I no longer saw it as a disability, but as a difference, though one with some aspects that were easier for me (and others!) to deal with than others. I reclaimed it as an identity from the know-it-all doctors and scientists and parents, and made it my own. At some point I discovered other autistic adults with similar views online, on the Autistics.org website, writings by Amanda Baggs (now Mel) Laura Tisconik, Jim Sinclair and many others. What was also cool is that many of these writers/activists are also queer-identified! I became a participant in what later became known as the Neurodiversity movement, advocating for a view that there are as many types of minds as there are people, and that we should be included and understood on our own terms, rather than expected to conform to a narrow concept of “normality” (or neurotypicality).

I attended Camp Discovery a couple of times as a camper, as did Dylan, my brother, and I also became a Mentor myself for 7 years! I decided to step away from that position to allow others to take it, as for many of us it is the first job we manage to get, or the first one in which we can really be ourselves. I was also asked to speak many times by Kari Dunn-Buron, the director of the camp and a professor at Hamline University’s autism education program. I spoke on (paid) panels about my experience on the spectrum at autism conferences and classes at Hamline. When Kari retired a few years ago, I lost that key connection, and I’ve been meaning to re-connect. However, I am really interested in doing speeches rather than just panels where I answer certain questions, as there are many issues which are not addressed. I want to focus more on discussing transition and employment issues, and dating, sexuality and relationships. I also would like to tailor speeches for different audiences- parents, education professionals, social work & healthcare workers, and so forth. And yes, I’d like to get paid, though I do not expect to make my entire living doing this! (Getting my driver’s license will make this work a lot easier!)

See also: Against Parent-Led Autism/Disability Organizations