Autism Awareness month is April, and I know we are saying “Autism Acceptance” instead of “Autism Awareness”. I’m writing this post though as “Awareness” because I know for myself, I accept Autism – it’s more than “accept” it; I prefer it. I prefer the Autistic world and I prefer being in the spectrum world. It’s also true at this point in my life (being middle aged and all) that I really don’t want to have much that is outside of the neurodiverse world.
It’s taken me a long time to realize that I have a sort of radar for picking up people on the spectrum, and that spectrum is very broad. It included Autistic folks, people with ADHD, hypersensitivities. It’s the easiest thing for me, and has always been the easiest thing for me, to just know who is and who isn’t. It’s like they sparkle for me; something in me perks up when I talk to them, there is a sense of just understanding them, of kinship.
I just thought it was a kinship thing, definitely very helpful. I could/can walk into a room and pick up on which kids sparkle, and nudge Micah over to those kids, because I knew he’d get along with them.
During my graduate studies though, it seemed to be progressively clear that this was more than some kind of kinship thing with me, Kinship doesn’t usually have radar for sparkle in it. “Kinship” does, however, explain how I scored as neurodivergent myself on Autism assessments. Suddenly, things shifted and clicked into place and world made a lot more sense.
Or did it?
You see, the thing that has been so confusing to me in life is how similar things can look or be, how expressions of symptoms might overlap, and then what does it all mean?
My growing up as a “third culture kid” (raised in cultures other than my parent’s own) + being deaf + having going through the windshield of a car when I was 4 + layers of trauma = a lot of the same manifestations of Autism. Or was the Autism there all along? What came first, you guys, the chicken or the egg?
I score as being on the spectrum in the assessments that I’ve taken.
Viewing my life now with that lens helps me understand some things better – hypercusis, for example. That’s always been really confusing for me. Like, how can a profoundly deaf person have hypercusis? I see that explained in my own cookie bite compressed hearing – there is such a narrow range in which I can hear (from where my hearing starts and when things become too loud), digital hearing aids are the only way I can go. They literally cut out the sounds that become too loud for me within the span of a few decibels.
The sound of plastic bags rustling has always made me writhe and it can put me in a mental frenzy. Everyone who knows me in real life knows this about me. With or without hearing aids, I can hear those plastic bags and they will make me DIEEEEEEEEEE. So, again, how does that fit with someone who is certified as profoundly deaf?!
A lot of my behaviors in life (including stimming – I rock back and forth to self soothe) and interactions with others and adults are easily explained and understood with and through a lens of Autism. Autistic special interests: I’ve always had that. That’s where all I do is read and think and want to talk about one subject only. I just thought that was being “intense,” as people have described me. And maybe it is. I don’t really know.
Divergent Mind is a book that I read earlier this year that flipped my lid. I felt like it was almost an account of chunks of my life, the struggles to fit in, understand things, say/do the “right” thing. The list goes on and on, and the point of this post isn’t so much to recount my journey in this, but to put it out there that we literally have so much more “awareness” to dive into.
We might think we understand Autism. We don’t.
We might think it’s time to ditch the awareness campaigns, but I’m not sure it is. If I can go through 40+ years with every expression of Autism and not know I’m Autistic… well, I know I can’t be alone. I’m never alone. I also know that the awareness of Autism needs to include an understanding of how expressions of different disabilities can look so much alike. How important it is to give space for the right answer to unfold.
Look Alike Disabilities: Bipolar, PTSD, ADHD and Autism
Symptoms of Bipolar Disorder, PTSD and ADHD and Autism can overlap. Anxiety (generalized or other) and depression can thread through it all. You can easily receive medication for the symptoms, but if you don’t understand where the root of it is, you never address the real problem.
Not that Autism is a problem. It’s not, not even a little bit.
It’s just that if you have Autism in your life, you need to figure out how to carve out your niche spaces in the world. You need to figure out how to avoid the sounds you hate, how to get hired doing something you love, how to figure out and follow unspoken social rules. How to connect with your people, and how to be in spaces that allow you to do deep dives in special interests. How to accommodate for concentration and all the other pieces that you might need accommodation for. Stuff like that. You need to figure it out because you will suffer in your life if you don’t.
If you are Autistic and you think you have Bipolar disorder and or PTSD, and you receive medication for the PTSD/Bipolar disorder, you are still left with your need to make sense of the world through your Autistic lens. The medication won’t help that. A deeper understanding of Autism will – it will give you all the tools you need; it gives you the reasons why. It gives you the wherewithal to connect with others like you, create the spaces you need to thrive.
We Don’t Understand Autism
We don’t understand Autism for so, so many reasons.
One, most of it’s still an us/them thing – with people outside of the community striving to shape the people in. Added to that, it’s seen as something separate, over there. Those kids, those people. Very cool and interesting people to be sure, but still, those people. That othering of autistics keeps us from examining assumptions and stereotypes, to see if they are really true or make sense.
9 times out of 10, I’m finding, those assumptions are waaaaaaay off track, but when we ‘other’ Autistics and make them into this weird species of human, rather than those who are near or dear to us (and even our own undiagnosed selves), I think we tend to swallow the message that the loudest people in the room have been saying. That is, “change them!”
We don’t understand Austim because the vast majority of the research and assessments have been done from a white straight male perspective. Autism presents very differently in females, and we are only beginning to scratch the surface of this.
There is so much more going on there.
Back to Autism Awareness and Autism Acceptance.
Like I said, I more than accept neurodiversity – I prefer it. In fact, it’s probably truer to say that I can’t function well without it. I am middle-aged now and my tolerance for “typical” thinking and expressions is pretty low.
But I have a lot to learn about it, that I’m still learning about it.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
Hi Meriah, thanks for this interesting article. I can totally relate to your aversion against plastic bag rustling. I was so relieved to see that I am not the only one who just hates this kind of noise. In my conversations with HCPs I used to call this aversion “hypercusis”, as you do in your article, and nobody ever contradicted. However, there is a medical condition called “misophonia”, which comes closer to your description. It is the hate for certain noises (https://www.webmd.com/mental-health/what-is-misophonia) not the volume that disturbs you but the noise as such. Although there is little research so far it seems that the origin of this condition is psychological, not physical. I hope more will be done in the future to help people like us cope with noise that others consider normal.
wow, that is so interesting!! thank you!