This is a copy of what I’ve already sent to them via this link. By the way, huge thanks to K @ Radical Neurodivergence Speaking for the kick to the rear as a reminder to do this.
Note: This is one time where any readers do not get to agree or disagree. These are my experiences and my experiences alone. You write your story in the comments? That’s fine. Just don’t dismiss mine.
To whom it may concern,
When I discovered late last week that the upcoming autism hearing would include actual autistic people and that advocates from ASAN had been invited, I was thrilled. I was so happy that for once, people like me were being LISTENED to. It actually moved me to tears, which isn’t something that often happens for me. I was so ecstatic to be included in decisions made about people like me that I cried. I thought later that of course there must be something truly *off* about that, because why shouldn’t I be included?
Most of the aforementioned hearing was focused on children, as it most often is. That would have been fine if the focus had been on education, resources for parents that don’t scream “make this child less autistic” but instead provided real tools for said child to interact with a neurotypical world when they are not. However, the focus was on vaccines, and I was appalled at the unscientific drivel that came from several people’s mouths. I was thankful that, for the most part, the representatives from the CDC combated the lies and fabrications being offered by others. But that is not enough.
Finally, Eleanor Holmes Norton spoke up and asked about autistic adults. I audibly cheered at that, that a question was being asked about us — finally!
She asked about people like me. People who weren’t in the system, maybe who were late diagnosed. She asked about people like me. I was diagnosed at age 30 with autism. I was functionally nonverbal until I was 8 years old, and I still do not have the same amount of functional language that most people my age have.
When I was a child, I was evaluated for everything under the sun. But no one thought of autism, because I was female, and oh, yes, there are still doctors to this day who don’t believe girls have autism (seen by the fact that the ratio of diagnosed boys is four times the amount of diagnosed girls). Also, most people just thought of me as shy, but no one ever really looked into why that is. Why was I shy? It’s because I couldn’t process all the information being thrown at me. The sensory issues, coupled with not understanding social rules and even processing language at the appropriate rate contributed to my overall quietness.
That’s beside the point, however, because back when I was evaluated for all these things, starting at age 7 or 8 (1988/89) and ending at age 12 with a “final” diagnosis of ADHD (1993), I was still at least one year too early to have been considered for a possible diagnosis of Asperger’s. People still had very wrong ideas about autism back then, and those attitudes aren’t gone today, not by any means.
Sadly, back then, ADHD was no more understood than autism, and many well meaning people tried to “fix” me, in similar ways to the “curebie” camp tries to “fix” autistic people. I was not, thankfully, submitted to bleach enemas or HBOT, but I certainly did have to do bizarre patterns on the floor, and take vitamin supplements and perform weird exercises in order to improve my visual processing. None of it worked, and I ended up feeling more broken than anything else.
What happened to me? Gratefully, I spent most of my time in good schools with small classes — all private Christian schools. Two of those schools had disability programs, which were mostly centered on the intellectually disabled (which I am not, by definition). The three years I attended one specific school, however, every single one of my deficits was amplified. I ended up leaving that particular school because I could not get through a single academic class without completely shutting down, because of sensory issues, bullying, threats, executive dysfunction. All of these things contributed to my issues, and thankfully, my parents had the wisdom to enroll me in a different school, with financial help from my maternal grandparents, who were able to make up the difference between the two schools. That school had a fabulous disability program and the coordinator understood my issues, despite the fact that I had never been formally diagnosed with autism. She pegged me for “other learning disorders” besides ADHD, but by that time, my parents saw no need for further evaluation.
I am a college graduate. I somehow managed to do that all on my own, without much help from the disabilities services, but that isn’t because I wanted to. It’s because thanks to the technological age, all of my professors had email addresses and they listened to me when I typed out an email expressing my issues with succeeding in their classes unless I was able to take my tests in the testing center, or being able to type everything I turned in vs. required to handwriting it.
Today, I am an adult with two children also on the spectrum. I am married to a person in the US Navy. This seems like I must be completely successful, because of course, I’m a college graduate and I have a successful relationship and children, so this must be the case? Actually, no. I still need help with some tasks that seem very basic — communicating outside of text and/or email is nearly impossible for me. I still need help managing my money. I hold down a part-time job, but find I am overstimulated if I work more than 15 hours in a week.
This is what an autistic adult looks like. Yes, there are those who are more successful than I, and some who have far more needs than I do. But this is my story and I felt the need to share it, because it seemed like there were very few people sharing what it was actually like to be autistic.