A year ago, I received a document from the neurocognitive psychologist that assessed my brain. Am I autistic? Or is it all in my head? I don’t know if the format of the results was atypical or if I’m just too autistic to understand it the way it was written, but I created a spreadsheet to quantify the qualitative data in the report.
Because of course I did.
I also had a follow-up with my counselor where the results were explained to me and my partner instead of leaving it up to my interpretation. That was the better method.
At any rate, I was given the language to describe certain aspects of my neurocognitive functionality. Discovering that I have a weaker auditory working memory compared to the average person allowed me to identify why I was struggling with processing auditory information. Instead of being the child that just wasn’t listening, I was actually the child that wasn’t properly processing spoken information. I was often disciplined for something that wasn’t even my fault—a congenital condition that was disabling. The adults around me during my childhood didn’t know and obviously, neither did I because I was a child.
My Experience Isn’t The Only One
My perception of reality was the only one I knew and I assumed everyone experienced the world the way I did because nobody told me we didn’t. Being autistic, I also think literally. Even when people would say, “everyone is different,” I rolled my eyes because obviously, I could see that we were different. I never understood that we were all also different on the inside, that we all processed things differently, that we all sensed things differently, that we all thought about things differently, that we all experience things differently. Nobody specified that piece of information because I guess most of the people around me were not autistic and honestly had no idea how much I needed things explained to me. People often thought I was being difficult on purpose when I asked for clarifying information that seemed obvious to them. Some people still do.
For most of my childhood and young adult life, I was under the false pretense that when we all witnessed something, we all had the same information. When I would get confused while watching a movie and someone would tell me to just stop asking questions and watch because “we’re all watching the same movie,” that told me we were all receiving the same data, processing this data in the same way, and therefore ought to be coming to the same conclusions about this data. Naturally, I believed everyone was just as confused as I was.
So either they too were faking confidence by pretending not to be confused, or they actually understood what was going on when I didn’t pick up on or was confused by unspoken or subtle social cues. It didn’t matter because the same message was conveyed: nobody wanted to see me struggle, so I needed to hide my problems.
It turns out that it took me nearly 30 years to learn that my experience isn’t the only one. Something everyone apparently learned just from the phrase, “we’re all different.”
Labels Matter
I’m an adult with a full-time job, married, and a child of my own. I am not lazy, unreliable, or not paying attention; my neurocognitive evaluation’s results revealed that I have deficits with processing speed, cognitive flexibility, and working memory (among other things, but these were the most notable and relevant to my point).
If knowledge is power, then ignorance is powerless. Only a hegemonic person would believe that ignorance is bliss because they’ve never truly experienced being powerless.
Now that I’ve identified my specific strengths and weaknesses, I can explore creative solutions and ask for accommodations. I feel empowered to advocate for myself because I finally know more about myself and what my needs are and how I can take steps so that I don’t have to struggle unnecessarily.
As they say, “you don’t know what you don’t know” and I didn’t know who I was or why I was suffering. Now I do and I can change it so I don’t have to suffer anymore. I don’t have to continue believing that I’m broken, subhuman, or unworthy of love. I learned that I’m still a full human worthy of life, just also disabled.
Autism is a Neurocognitive Disability
My deficits are measurable, as evidence by the neurocognitive evaluation, and I can tell you from experience that they are disabling and can be made worse with stress. However, they are not listed as criteria for Autism Spectrum Disorder (ASD) in the DSM-5, but I assure you that it’s not a coincidence.
You see, the criteria for ASD is only what an outsider can observe of an autistic person. This makes sense when you’re diagnosing a toddler that cannot tell you why they’re spinning in circles. But I am an adult, an autistic adult capable of communicating with you, and I can tell you why I spin in circles seemingly at random, why you had to tell me the same thing multiple times, why I can’t just drop what I’m doing to respond to you.
So believe me when I do because I’m able to draw the connections between my neurocognitive weaknesses with some of my own characteristics, some of which are autistic traits. This means that the information I uncover may be relevant to your autistic child.
The Identification Continues
Since I received my diagnosis, I’ve been constantly analyzing my own behaviors, responses, and really trying to dig deep into why I do things this way or how I arrived at a conclusion in this manner.
I find patterns. It’s one of the things I do. It’s one of the things that makes me really good at my job. I’ve been drawing links between a behavior and associating it with something on my evaluation results.
For example, I am aggressive when my hyperfocus is interrupted, I am short and snappy when my partner talks to me while I’m working from home even if it’s just to tell me that lunch is ready. I believe the pain I experience from task interruption is related to my weaker cognitive flexibility.
The average person is able to keep 5-9 items in their mind at once. I have a feeling that I’m closer to 3-5 items. So when I’m exceeding my limit, it stresses me out, I become anxious, and that results in irritability.
But instead, a Behavior Analyst would observe this and simply say that I am inflexible to changes in routine and have difficulties with transitions. They aren’t wrong, but they don’t know the full picture and often don’t care why.
A BCBA’s approach to an autistic child with these issues would be to teach the child to pretend that they aren’t angry at the transition and to charge through it. The ABC’s of Applied Behavior Analysis (antecedent, behavior, consequence) means that the transition/interruption is the antecedent, the outburst of anger is the behavior, and whatever punishment they use becomes the consequence, and the intent is to eliminate the outburst of anger.
This is unhelpful because pretending that I’m not angry doesn’t make the feeling go away. It’s just another way of teaching me to bottle up my feelings and can cause long-term damage to my mental health (oh wait, it did!). ABA does not consider accommodating the autistic child’s needs and only focuses on their behavior matching the neurotypical expectations.
Instead, find ways to interrupt without disrupting. But that, my friend, is a whole other article worth writing and this one is long enough.
Self-awareness comes from education and knowledge about yourself. Knowledge is inherently neutral. The facts that I learned about myself, that I’m still learning, are not good or bad by themselves, but society has a predisposition that equates disability with bad and is therefore built for neurotypical brains.
The opposite of disabled is not abled; the opposite of disabled is enabled.
Lived Experience is Expertise
One of my clients recently started introducing me as an expert front-end web developer and of course, I immediately begin to minimize myself because imposter syndrome starts settling in. I’ve been working for my current employer for over 5 years now and in this industry for nearly a decade. Let’s not forget that programming is my special interest so you know damn well that I’m going to put more effort into it than your neurotypical programmers who’s been working in this field for as long as I have.
But one thing I absolutely, without a doubt, 100% know about is me. I know what I went through and the challenges I’ve endured. While I’m still learning how to put them into perspective, I know my truth.
I am not an expert on autism but I am an expert on me and I am autistic. My 30 years of lived experience is worth something when it comes to autistic advocacy. I don’t speak for the autistic community. I am just one voice in it.
“Want to learn how to climb a mountain? Ask someone who’s climbed a mountain. Want to learn how to build a house? Ask someone who’s built a house. Want to learn how to help autistic children? Ask an autistic adult.”—Autistic Not Weird
How Do I Achieve Self-Awareness?
This is easier said than done. You must find your people. Join autistic-led groups on Facebook or follow the #ActuallyAutistic hashtag on Facebook, Twitter, or TikTok. Speaking of TikTok, consider following the #AutisticTikTok and #AutisTikTok tags too.
Once you find your people and surround yourself with others who think and act and behave like you, the people who will nod their heads in understanding and offer up their own stories in solidarity, the people who you feel like you can be yourself around, you’ll start to feel more comfortable in who you are.
Good luck.
Editor's Note: This article was originally published on , and was last reviewed on .
