There is so much going on in the political landscape autism wise right now. I feel like I should be writing about it but the words aren’t coming. I think this is for two reasons.
1. The energy just isn’t there.
2. I don’t think I have anything unique to add to the conversation.
The message I’m seeing from all of the autistic content creators that I follow (Instagram, Facebook and YouTube) is the same and I am in agreeance.
In the name of awareness, and in case you somehow may have missed any of this… Here are some topics to Google…
A few days ago, on autism acceptance day (though I did not realize this until after the fact), I became officially autistic. Of course that’s not true, I was already autistic. I have always been autistic but that is how it felt. I feel like I no longer have the need to qualify the fact that I am autistic with “self diagnosed at this point…”, as if self diagnosis isn’t valid. Unfortunately though, to many it isn’t valid and even though I’ve known… I have known that I am autistic for quite some time now, claiming it felt disingenuous. Imposter syndrome is real y’all.
So…on autism acceptance day, I had my formal autism assessment and became formally autistic and now no one will ever have cause to doubt my autisticness, right? If only that were truly the case.
I will not receive my actual report for another week or so but the psychologist did tell me her thoughts on my diagnosis… C-PTSD, Autism, and ADHD. She also mentioned dissociation, alexithymia and giftedness. When my mom asked what the psychologist had said, that is what I told her… C-PTSD, autism, ADHD… And my mom said ” you don’t have any of those”. The following day when I asked my dad if Mom had told him that both my son and I had received an autism diagnosis, he replied “yeah, she said you said that” and walked out of the room. So, yeah, there’s that.
Being that April is autism month, I’ve seen so much debate over whether that should be qualified with awareness or acceptance, i.e. autism acceptance month or autism awareness month. I agree that acceptance is important. Awareness speaks of just that, an awareness that we exist, while acceptance speaks to accomodation, it speaks to change, it speaks to the possibility of inclusion, the possibility of healing but…. As much as acceptance is needed, we, as a society aren’t ready to drop the need for awareness just yet.
It isn’t that my parents (and most people including countless doctors and even professionals supposedly qualified to diagnose autism) think that I’m (and so many others are) not autistic because they’re just being assholes (although, I am aware that that can be a problem with some people too). They aren’t able to believe me because of a fundamental societal misunderstanding about what autism is and the myriad ways that it can present. This is a problem of lack of accurate information and education.
I want to say that it’s amazing that it took 44 years for me to receive an accurate diagnosis. I want to say that my differences have been apparent my entire life and it’s amazing that I went under the radar for so long. The truth is though, it isn’t amazing and I didn’t go under the radar. Instead, I collected mental health diagnoses like clothing that didn’t quite fit, that sat as clutter in the closet of my mind.
I’ve been viewed as sick and broken my entire life, so… I lived as if I were sick and broken and in need of fixing. Try to fix myself, I did. I dedicated my life to fixing myself. I suppressed all of the parts of myself that were natural and easy and authentic. All of the parts that I like about myself. The parts that make me me. All in the name of fixing myself. I fixed myself until my self was completely gone and all that was left was actual sickness, brokenness. This is why I’ll argue that both awareness and acceptance are equally important. Without awareness, there can be no acceptance. Unfortunately, as a society we are woefully unaware.
Man, reading this book was like reading about my life. Like, hey Steph, are you sure you weren’t a fly on the wall in like all of my therapy sessions, with all of my previous therapists? Memory after memory kept coming back. I wish that I could say that they were good ones, but….
Unfortunately, they were more along the lines of that time my well meaning therapist would stop interacting with me in conversation until I made eye contact. Her assumption being that my lack of eye contact was shame based. Nope, I cannot find words, verbalize language, when I’m doing something other than speaking. That definitely includes trying to make eye contact. Or how two separate therapists restricted my use of the phrase “I don’t know”. Again, this was assumed to be shame based or a form of avoidance. Nope, I literally did not know… Their questions too vague and open ended. I need specificity. Come on now, I’m autistic, yo!
It brought back all of the ways that therapy had failed me. All of the ways that I thought that I had failed at therapy. After more than a decade of failed attempts, with at least 6 separate therapists, I assumed that I was not meant for therapy. That there was something so wrong with me that no matter how hard I tried, I was destined to fail.
Recently, I did decide to try again. I’ve been back in therapy for probably getting close to a year. The reason being that my naturopath recommended EMDR. If I was going to go all in on this healing physically thing, I needed to give it a shot. That along with this fear that I had. As much as I wanted to heal, who would I be on the other side? So much of my identity is tied up in being sick. Who am I? Did I ever know?
Enter autism. My missing piece. I don’t think I want to get into how I discovered that I am autistic in this post, it’s going to be long enough already. I’ll save that story for another day, but here’s what’s important to know right now. Even though I’ve known for almost a year that I am autistic, it’s been a struggle to accept that (again, reasons for that, another day, another post).
I’ve spent more time then I care to recount going back and forth in my head over the validity of the idea of my son and I being autistic. At this point, I no longer question it. I am autistic. So is my son.
While I am on a waiting list for a professional assessment right now, in the mean time, I am seeing a therapist who is also autistic. They have confirmed their belief that I am autistic. This along with all of the research I’ve been doing has been extremely validating. Honestly though, I didn’t get to full acceptance until reading this book. That is how spot on it was regarding my experiences with therapy. It highlighted so much of my life that I was finally able to say, yes, without a doubt, I am autistic.
Here’s the thing though… I already knew… I always knew. I just didn’t know what it was that I knew. I can’t count the times that I’ve tried to explain it to someone… “Yes, I struggle with anxiety/social phobia/depression… But… There is something else”. I’ve said that so many times it makes my head spin thinking about it. I didn’t know what that something else was but I assumed it was the thing that was broken in me. That if I could figure that out and fix it, then I would be able to function like everyone else. Then I would be healed.
Had I understood that it wasn’t something that needed to be fixed. In fact, it’s not something that can be fixed, but instead my neurology and there’s nothing wrong with that. There is nothing wrong with me. I may have been able to save a lot of pain. For myself and those around me.
If I had gotten a diagnosis as a child maybe I wouldn’t have used an eating disorder to feel some kind of control over my life. Maybe I wouldn’t have turned to drugs and alcohol to as a cover for my extreme social anxiety. Maybe the social anxiety would never have gotten so bad, had I known there was nothing wrong with my way communicating and that I didn’t need to change it in order to be enough. Maybe I wouldn’t have pushed myself to the point of burnout and self harm and suicide attempt or multiple daily meltdowns, had I known.
Maybe, maybe not but… I whole heartedly believe that had I known that my way of being in the world was not wrong, only different, I could have found a way to accept myself. If I understood that I am not neurotypical and there was no amount of healing that would change that, I could have found a way to live a life that took my limitations into account and focused on my strengths. Perhaps I could have thrived instead of fallen so ill.
Education about autism and it’s myriad presentations is important. Diagnosis is important. Listening to autistic people and their experiences is so important. As a society, we are failing so many people like myself, people who fall though the cracks. Keeping this conversation going and sharing our stories is important. I invite you to share yours, as well.
