I wish I had something clever or witty to start off with, but I don’t. I have been struggling with my mental health recently – we are a month into this quarantine, which means a month of everybody always home, not being able to get the solitude that I so desperately need for my mental health. I’ve also been dealing with a lot of my childhood trauma lately, and seeing the true extent to which I have learned to mask. So I took a few days off to re-center myself, do some self-care, and try to come up with a plan going forward for handling this current situation.
In the midst of all of that, I almost forgot that this month is Autism Acceptance Month. (I put “awareness” month in the title because I am hoping to get views here, so I tried to play into algorithms.) Disclaimer: This piece is about how I, personally, experience life as an autistic person. I am not trying to speak to anyone else’s experience, as all autistic folx are not the same, it is a vast spectrum and my experiences are not the same as everyone else’s. This piece SHOULD NOT be used to invalidate any other autistic person’s lived experiences!!
I was diagnosed as autistic when I started kindergarten. Due to PTSD, I do not have many memories from that time, but I remember taking a bunch of evaluations, and being transferred from one kindergarten class to another. I only learned about the diagnosis a few years ago (I was diagnosed in 1991), because my parents went to great lengths to hide it from me. If I asked why I was tested, I was told that my parents had insisted the school give me an IQ test. The switch in classes was brushed aside as “a more convenient time,” for my mother to drop me off/pick me up. I don’t remember ever asking, or even wondering, why I was getting physical, occupational, and speech therapy at school. I accepted their reasoning, never thought to question whether they were telling the truth.
As I grew up, I slowly came to realize that my family was incredibly mentally and emotionally abusive to me. Eventually, I was able to cut all ties with them, I now have a wonderful adopted family, and began down the path that would lead to me finally learning about my diagnosis. I became a teacher’s aide in a self-contained, autism-specific, special education class. Working with these students brought back memories that I had repressed for years, and I grew so curious that I ended up contacting my former elementary school. I was able to explain my situation, prove that I was requesting personal information only about myself, and finally got to see first-hand my official diagnosis – autism, with significant language delays, significant gross motor skill impairment, significant fine motor skill impairment. Suddenly, my life seemed to click into focus for the first time ever.
For as long as I can recall, I have wondered why I seem to not be able to function the way everyone around me is able to. Why do I get so distressed when I’m thrown off of my routine? Why do my hands flap so much when I’m excited? Why can’t I look people in the eye for more than a fraction of a second? Why do I sometimes throw “tantrums” that I cannot control? Why can’t I control them? All these questions and more would play on an almost constant loop in my head. There were times when I felt jealous of autistic people, because they could do these things that I needed to do. It never occurred to me that I had these needs because I, too, am autistic. I thought I was (for lack of a better term) trying to appropriate autistic culture. So when I learned about my diagnosis, I had to learn as much as I could about other autistic folx, and immerse myself in this culture I had spent so long not knowing I belonged to.
While I’m still trying to figure out how to handle certain aspects of my sensory processing issues, I have found out quite a bit about just how deeply autism makes up who I am. Written languages come fairly easily to me, but speaking and understanding people who are speaking to me is far less so. There was a period in time where I communicated solely through American Sign Language – other people could speak verbally to me and I would (more or less) understand, but verbalizing has never come naturally to me. I am able to verbalize quite a bit now, but it still is difficult unless I am truly comfortable with the people around me. I prefer to communicate through non-verbal means, and I am eternally grateful for instant messaging and texting technologies. I also enjoy communicating through music – I primarily sing, but I love watching dance. I am finally comfortable with allowing myself certain sensory stims which give me great joy – primarily a blanket with a lovely satiny border, and a good pair of noise-blocking earbuds for when the noise around me is too much to bear. I have a hammock in my yard for when I feel the need to swing. And, I have a family who allow me to take the time I need to myself to keep my mental health in balance. I consider myself lucky to be autistic, I see it as my super power.
In becoming more open about my diagnosis, I have become somewhat of a role model to my neurodiverse nieces and nephew, as well as some of their ND friends. Since our society typically sees autism as something which only affects children, many autistic and otherwise ND children grow up to think there must be something wrong with them. The image portrayed is that people either grow out of their neurology, or they are too incapacitated to live independently. Rarely has there been any in-between shown, until extremely recently. Since I tend to be very honest in answering questions, even personal ones, they have gotten to see that there are adults who understand what they are going through. They get to see me struggle, because I don’t try to hide it. They know that I have meltdowns in private, because I explain to them afterwards why I had to excuse myself from a situation. They watch me find accommodations for my difficulties, they see me ask for help when I need it, and they see me advocate for their needs. (Heck, the inspiration for my pen name was these kids – half the neighborhood calls me Auntie, and we are in the process of turning our large attic into a small apartment for myself and my son.) I love that I get to be the role model for these amazing kids. They need to see more representation, not just in Hollywood and our media, but in reality. Our kids need to see more folx like Greta Thunberg, Carly Fleischmann, Sir Anthony Hopkins, Dan Aykroyd, etc. We need to see people who are adults, #actuallyautistic, and thriving!