Surprise— It’s Autism! A Journey to Reclaiming My Life

Written By Melissa St. Clair

I am autistic. That’s the first time I’ve typed those words. I’ve told several people in my life and somehow nobodies been surprised. While it’s ncredibly validating, it also makes me so sad — like there was an inside joke that I wasn’t a part of.

Now that you have the ending, let’s rewind a little bit.

Last October, after a life of constant questioning, I discovered I’m autistic. Something I never really considered suddenly was the answer to everything. All the other diagnoses I had been given in the past, severe anxiety, CPTSD, situational depression, etc. Referrals to behavioral therapy for things that appeared like OCD. I worked in a doctors office as a medical assistant and my behaviors never went unnoticed but due to the lack of actual research there has been on female autism and the way it presents, it was never even discussed.

I’m 43 years old now and have spent my whole life trying to heal from something that’s not to be healed. My whole life everyone telling me I need to relax, calm down, worry less, put less on my plate, feel less, be less extra.

I have journals from elementary school documenting the everyday struggles I was having. But I was also a “gifted” student. My reading and writing skills were way above grade level so it somehow balanced how much I struggled with literally everything else. I was a picky eater and a kid who was always sick. But the kind of sickness that made grown ups think I was putting on a show. I was constantly told I was being dramatic and that I need to just pull it together. The nurse and the school counselors were some of my best friends as a kid. I could go sit somewhere alone and quiet and that always made it better. I found so much comfort making my bed in the closet. Any small space I could squeeze into and make my own little world. A lot of the “funny” stories from my childhood that my family would repeat are perfect examples of the meltdowns I would have. My dad poured syrup on my pancakes and I lost it. Sobbing hysterically. But it was always framed as me being “extra” and “dramatic” when I knew I was absolutely not ok.

There’s too many examples. This article would be a million pages long if I listed out all the ways I knew I was different.

I also have time synesthesia and excellent pattern recognition so I can remember literally everything, which becomes very overwhelming. I learned a long time ago to try and mask a lot of these behaviors. Sometimes it’s a cool party trick to be able to recall certain events, or dates with crazy detail, but most of the time people think it’s annoying. It’s annoying because I don’t forget. So it sounds like I care too much. It comes off and me dwelling on things in relationships because I can see that it was Wednesday in 2009 and I was wearing a purple sweatshirt and we definitely talked about this already. It comes off with me correcting people at unnecessary moments because I remember it very specifically.

My hobbies were always very intense. I collected penguins for several years as a child. It was all I could focus on. I learned everything about penguins. Every gift I wanted had to do with penguins. I drew penguins and had school folders and socks with penguins on them. I arranged and rearranged my collection. I could never imaginative play with any of my toys but would organize them. I couldn’t watch cartoons but could get lost forever in books.

There has been a lifetime of trauma trying figure all this out. Now I know. Now I’m in support groups and have close friends who are autistic. I know that when I can’t eat for several days or weeks it’s ok to stay alive with applesauce. The complicated relationship I’ve had with not being able to eat lead to anorexia and binging off and on for most of my life starting as a teenager now makes sense. It doesn’t make it all go away but it makes it easier to manage and not end up in really bad places. I know that just pushing through life when I’m exhausted only leads to much worse burn out scenarios. That’s were I’ve been since October. Constant meltdowns, the inability to figure out what to eat, so I don’t. Being so tired and not sleeping. I am constantly overwhelmed.

Once I discovered this I had to spend all my days researching. Reading the DSM-5 criteria. (The Diagnostic and Statistical Manual of Mental Disorders, often known as the “DSM,” is a reference book on mental health and brain-related conditions and disorders. The American Psychiatric Association (APA) is responsible for the writing, editing, reviewing and publishing of this book.) Self assessments. Support groups.

In all my research I knew my dad was also autistic. It wasn’t something I was ready to talk to him about yet. My dad was the most regulated person I’ve ever know. The most routine and consistent person I’ve ever known. I felt like telling him even about myself, let alone him, that the information would be invalidated in his attempt to make sure I’m ok. So for now, I’d keep it to myself. Except just 8 weeks later my dad got sick and passed away just before the new year.

In the hospital it was obvious where I got the time synesthesia from as my dad can perfectly recount every last detail of the day surrounding any photo you show him. How did I never know how alike we were? I can see clearly now that some of our inability to understand each other in certain moments is because we were struggling with the same things. I’ve struggled so much with the idea that my perception of life has been off. That I don’t accurately perceive things as well as I thought I did. So on my dads death bed when I told him that it always felt like my emotions were a little too much for him and his response was “maybe your perception is off,” it blew my mind. He told me he learned a long time ago it was just easier to stay in the middle. To not have the big ups and bigger downs.

I asked him if he knew that we had the same brain. That ours work in a way that others don’t and he nodded along. I knew he knew, but now it’s too late to talk about. The conversations I was nervous to have would now never take place. So I take two things away. My dad stayed even by routine and spending most of his days outside. That little bit of help from my dad has already saved me more times then I can count.

Currently I do not have a formal diagnoses. I have gone back and forth with the pros and cons. One of the first big cons is that a majority of professionals do not yet have the knowledge needed to accurately assess autism in women or adults. Research was based on a very narrow cis white male population and is only just now catching up. Terms like Asperger’s are still being used based on outdated ideas and notions of what autism is and what a spectrum even looks like.

The fact that I had to mask (hide autistic traits) who I am since childhood confuses people who think to be autistic you must not be good with people or conversation. For starters I do go non verbal all the time. If you are close to me you already know this. I do rock back and forth all the time to regulate and in the past couple years had stopped hiding it.

Even though it wasn’t until last October that I really knew what I was dealing with, I had been putting in accommodations to help make my days better. By working for myself in environments I feel safe and in control of. By only wearing soft clothing. One of my major memories was going into middle school thinking I needed to wear jeans and how uncomfortable they made me. I would sweat and overheat from my sensory issues. Three years ago I donated any remaining pairs of jeans I owned knowing I would never do that to myself again. I’ve always had short hair because of sensory issues. I have noise canceling headphones now to help keep me from being over stimulated. I stopped worrying about missing out on things because I just couldn’t go. There doesn’t have to be a good and tangible reason other then I just don’t feel like it. I spent my whole life trying to pep myself up and go make friends. Fearing that I’m antisocial and just need to work on that. Not being able to explain the actual feelings that arise in my body when it comes to interacting no matter how good I might appear to be at it. Taking all the social pressures off.

I honestly don’t know how I’ve made it this far. That may sound dramatic but I assure you it’s not. The absolute struggle I’ve had every single day of my entire life to just feed myself and get appropriate sleep is insane. It makes me incredibly sad. The episodes of “depression” that never felt like depression were actually burnout. I pushed myself so hard in my twenties and early thirties that I was unable to get off the couch for nearly a year. Lost my job. Couldn’t walk my dogs. I’m kinda back in that same space again now. Having to reframe my entire existence is exhausting. The grief of losing my dad has added even more big feelings to my plate and I’m just so tired. Having people bring me home cooked food after he passed is actually something I’ve always needed when I have a hard time eating. I can’t make decisions when I’m in these states so I get stuck, starving and weak. Knowing I will continue to have great days and then absolutely crash makes me so sad. The hope I feel, followed by the absolute hopelessness sucks every time.

I used to just think I would heal my trauma and then have the best life. That everything would make sense and become easier. I pursued it relentlessly. So while I am happy to have the answers, I’m also so overwhelmed knowing this is my reality and it will continue. I know it’s hard for some of the people closest to me to hear. It sounds like I’m giving up or content with being sad but it’s not. I am disabled. I know I have accomplished great things and I will continue to accomplish great things but I’m also not ok. I’m not ok and I finally have the vocabulary and the answers to express what it is. I’m not dramatic. I’m not antisocial. I’m not faking illness. I’m not extra. I am autistic. I need to continue to make accommodations for myself and understand how I best stay regulated.

As I said above I’ve gone back and forth on a formal diagnoses and if it’s necessary. I mean I’m not in school anymore where accommodations would have been helpful. I work for myself so I can accommodate myself as needed. So why? I don’t even go to the doctor. But one day it’ll matter and I want to help out myself in the best postion I can.

My dad was eligible for social security and Medicare but wasn’t enrolled in either when he entered the hospital. People couldn’t understand why he wouldn’t have signed up for free money and health care but I knew. It’s the paperwork. He needed help getting the paper work done. I have the same struggle. And again I know everyone tries to, even when they mean well, minimize it. Everyone has trouble trying in paperwork or everyone has a hard time doing xyz. One that’s not helpful. Actually it makes me feel much worse that I’m not being seen. And two no, everybody doesn’t struggle. I hadn’t filed taxes for 5 years because I just couldn’t. It doesn’t matter what you think I’m capable of. It’s ableist behaviors that have kept me from getting the help I needed because I always presented so smart or so capable. Being afraid to appear that I’m attention seeking gives me the same yucky feelings from when I was a kid trying to explain to everyone that I wasn’t ok. This is the scariest most vulnerable thing I’ve ever written about. I’m sure it’s due to internalized ableist rhetoric. Saying I’m disabled to the world is uncomfortable and freeing.

So what’s next? Coping through each day. Finding a new normal. Im learning to treat myself with kindness and grace like I’ve never known but it’s tough. Society has taught us to just pull ourselves together and for the years I did just that my body is physically failing. I did great harm to myself going undiagnosed and untreated my whole life. There is a great level of trauma associated with feeling so misunderstood. I will search for a doctor and evaluation. I’m not even the tiniest bit questioning if autism is accurate. Self diagnoses is valid with the autism community as who knows us better than us? Who has spent more time then me trying to sort this all out for the last 40 years?

“Refusing to preform neurotypicality is a revolutionary act of disability justice. It’s also a radical act of self love.” -Unmasking Autism by Devon Price