I’ve known for years that I’m probably Autistic, and I’ve been comfortable enough with it to share this with a few people over the last year or so. I’ve even just recently started telling doctors that I have undiagnosed Autism and that my Bipolar Disorder is an obvious misdiagnosis to anyone familiar with either the adrenaline issues connected to EDS or Autism. Only two doctors, very recently, and they paid zero attention to me, but they’re both orthopedic specialists so it means nada to them. I do not have the mood swings associated with BPD. It was diagnosed in 2003-2004 by a doctor I saw a grand total of twice when I was struggling with an abusive partner and still unable to share my trauma with others.
The woman blogging on Anonymously Autistic seems to perfectly illustrate my own thoughts on my Autism, and this post of hers below is no exception. It’s because of the validation I’ve gotten by reading her blog (and others’, both written and on video) that I’ve come into a new confidence about it and am finally able to share with others that I do have Autism. And guess what: those who know about ASD don’t disagree with me. I’d been scared about being dismissed since I’m not obviously Autistic – I’m weird and super smart, but my stims just look like fidgeting. I come across as just odd and awkward, not as having a sensory processing issue.
This strange feeling that I only get on my best, healthiest, clearest mind day – am I REALLY Autistic? Then a bad sensory day where I cannot leave the house or cry in public reminds me – still an Aspie!
I’ve considered seeking an official diagnosis, but since I have so much going on physically and am still able to communicate mostly without help, I’ve not seen it as something I need. People know about my neurological issues, and they’re able to accept my differences as based in brain damage. I’m okay with leaving it at that for now. Of course, each time I’m caught in a moment where I feel socially inept, I want the diagnosis flag to be able to waive around as a validative defense, but then I calm and recenter myself and realize that feeling is sourced in my internalized ableism. We’re not all socially identical, and there are literally thousands of reasons behind our differences. Why should I need to defend or even proclaim my reasons? Why should I desire acceptance and validation from people who want to look down on me for functioning differently?
I’m also scared I’ll be taken even less seriously by some because they assume Autism means I’m less able or less intelligent than I am, and assumptions like that drive me insane! Being talked down to or written off triggers a vengeful rage that I can’t stop myself from ruminating on for days, weeks, even months, depending. I already get dismissed a lot, and I worry the ignorance of most people might exacerbate that if I were open about it or officially diagnosed.
So, you might be asking how my Autism manifests…
As a toddler, my parents would hand me a french fry. I’d eat it, happily, but then I’d cry until someone wiped my hands clean. Then I’d want another one. Rinse and repeat. I’ve had sensory aversions from infancy. It’s gotten better as I’ve aged, but for the most part, I can’t stand having stuff on me. I don’t mind getting dirty, but I need to wash off immediately, or it eats at my brain ferociously until remedied.
I can’t stand foods that “pop” when chewed: shellfish, sausages, chewy meat; or gooey/slimy foods like pudding or oysters. Pasta has to be cooked just right, as do vegetables. If I don’t like the smell, even slightly, I can’t eat it – fruit that’s ripe enough to have a scent usually makes me gag (bananas, berries, stone fruits).
In kindergarten and early elementary school, my parents would hear from teachers that I had a habit of not turning in homework. It was because I didn’t turn in anything unfinished, and to me, if it didn’t have all the correct answers, it wasn’t finished. I eventually learned that it was okay to turn in incomplete work, but it rarely happened, and my perfectionism remains to this day.
I also didn’t talk to anyone almost at all until something like second grade (~9 years old). I did talk. There’s been no mention of language delay that I can remember, but I know I didn’t talk much outside of family gatherings, and even then I was “shy”. I remember as a kid just having no idea what to say. I know I understood what was said to me, but finding the right words to put together just didn’t happen. This lead to bullying and being somewhat ostracized. I’ve learned a lot about communication as I’ve gotten older, and when I was introduced to grammar rules, I started talking more because then it became a program to operate, like I’d finally downloaded the software I had been lacking. Learning French in high school catapulted my communicative knowledge and skills, but I still struggle with finding the right words or the right way to say those words. I have a B.A. in French with a teaching focus, and I did all of the coursework required for a M.A. in Linguistics with a specialization in socio-historical linguistics and the evolution of the modern French language. I’m phenomenal in writing, but socially, I just don’t process things fast enough to keep up in conversation so I tend to be more quiet than involved and a bit slow when I do engage.
My teachers in elementary wanted to advance me to a higher grade level because of my intelligence, but my parents, thankfully, decided it would be better for me socially to remain with kids my own age – I was already one of the youngest kids in my class.
In middle school, I often stayed inside for lunch recess to do homework because I didn’t like the commotion of the playground. Of course, the EDS I didn’t know I had made playing outside difficult for me in a way that I couldn’t explain. I have always loved being outside, but for me, it needs to be quiet – people quiet, so I can hear only nature sounds – and low-impact.
I’ve always been “fidgety”, picking at my fingernails, tapping, rocking up and back on my feet, biting my lip scar or wrinkling up my face in odd ways, dancing in place when forced to stand still, and even constantly scratching or rubbing some part of my body. I never stop moving. Ever. Unless I just physically cannot, and even then I switch positions often because it’s too painful for me to maintain body weight pressure on many parts of my body.
I’ve always been hypersensitive to sounds, physical sensations, emotional energy from others, light, odors, and even atmospheric pressure. I hit overload easily, even more so now after my neurological injuries, and I often need to decompress: alone time either in bed with the covers over my head and the lights off or doing something creative. I used to include long drives with loud music or walks in the woods, but those are both activities I need help with now.
There’s plenty more. That’s definitely not everything I can identify in myself as resulting from Autism, but I think you get the picture. I feel like I’ll eventually seek an official diagnosis, but for the time being, I’ve decided to focus on the EDS and Chiari/syringeomyelia stuff. I mean, what’s the point in having an Autism diagnosis if I my body is literally shutting down anyway?