Officially Autistic: Awareness vs Acceptance

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.

Undiagnosis

If you look up the typical signs of autism in a toddler, my son doesn’t really fit the bill. He’s has had no language delays. No intellectual dysfunction. He makes eye contact with no problem, uses his imagination to tell me creative stories and is at least somewhat social. He’s always responded to his name, smiled when you smile at him… Fuck, he doesn’t even toe walk…

What he does do is line up his toys, stack them up, organize, reorganize..He is sensory seeking, rolling and bouncing and rocking and hitting himself into and onto my body, the couch, the walls. He’s eaten the same thing for dinner for the past year and half or so. He went though a period where we had to be very careful in what textures he ate, how fast he ate, if he chewed well enough… Or he would gag and vomit. He runs and hand flaps whilst pooping. He hand flaps and makes other happy gestures when he’s excited. He “puts water in nose, eyes, ears”… Finger to mouth, finger to nose. Finger to mouth, finger to eye. Finger to mouth, finger to ear. Over and over.

The most telling sign of all, I’m my opinion, is his extreme demand avoidance. His equalizing behavior when stressed out. How contrary he can be…

Despite all of these things, most people (even autism “experts”) see him as neurotypical…. Listen to how well he speaks, oh and he’s so sweet and creative and social and and and…

I am fairly certain that I am undiagnosed autistic. I went under the radar my whole life and the consequences have been dire. I’m not willing to let that happen to me child.

Finding appropriate and affordable help should not be so damn difficult.