I had had my suspicions ever since I went through the diagnosis process with my son that maybe I was on the spectrum. While we were going through the questionnaire, it became a game with my now ex about which qualities were my sons and which were mine. It was spooky to see a lot of me in my son and seeing some differences between us that were still on the spectrum.
Over the years I have taken several tests to determine if I was Autistic. Some ad hoc and hokey, some legitimate pretests. All of them said I was on the spectrum, none said I was more than Asperger’s, but none said I was on the cusp, either. I would meet people and those with experience in special education or working with Autism would say to me “You know you’re Autistic, right?”
No, Mildred, I did not.
I finally decided to put the question to bed and sought out someone that I felt comfortable would give it to me straight. Autism, I believe, is the new “mental defect du jour,” like ADHD was in the 90s and PTSD in the Aughts. Now it seems everyone with a mild sense of anxiety or a social awkwardness is declaring themselves “on the Spectrum.” After a lot of research, I found a specialist who would say definitively yes or no, not just give me a positive to justify the expense of what I was paying (yes, doctors do this).
It was a very difficult thing to determine, though. There are a lot of ways that I didn’t “seem” to present Autism. I could engage in social activities, I could monitor myself, I could understand what people are expressing, but on a deeper dive, I had miraculously – and out of sheer necessity – developed management and coping skills. I wasn’t doing any of these things as a neurotypical would, for me they were all a process, math, detail observation and analyzation, and developing cognitive associations to mitigate myself, not be myself.
One key to the puzzle was with my son. He grew up in a home with a lot of love and affection. He grew up knowing for sure he was safe, loved, and appreciated. His home was warm and kind, with very little anger or confrontation. Because of this upbringing, he struggles to identify if people are angry with him, frustrated, or sarcastic, but he can tell if people like him and are genuine.
I grew up in violence, rage, and at a minimum, apathy. I had the exact opposite experience of my son, and because of that I can tell within milliseconds if I am in danger, if there is a threat, or if someone is being dishonest, deceitful, or sarcastic. I don’t trust directness but I also long for it, and I cannot tell if people like me. I really didn’t like people touching me. Made me a very safe cop; made me lousy in relationships.
I had all of this data, had a plausible possibility I am on the spectrum, but no idea what it would mean. Almost every story of childhood hardship with Autism applied to me, but I also succeeded where many failed.
In 2018, the diagnosis came down – I am officially on the Autism Spectrum. Instantly, I was relieved that all of the weirdness, hardship, difficulty understanding others and engaging in good relationships, and all of the hypersensitivity-to-so-many-things-that-I-felt-crazy made sense. It isn’t me just being a difficult person, I am built this way. I am successful at not ending myself despite all of it. But, I was also crushed – where did my Autism end and I begin?
It led to other existential questions. First, for all the neurotypicals out there – yes, we are excruciatingly aware of our oddness and our “not-belongingness.” We see ourselves heading off the tracks as we are speeding over them, seeing the impending train wreck of conversation/relationship/social interaction/work experience, but we can’t stop it. Think about every time you were in a car accident, fell off of something, or injured yourself – that sensation of “oh crap” and being powerless to do anything, that weird mental gyroscope of doom where you feel a bit off center and 3.5 feet to the left and back as it happens, that is our daily experience in EVERYTHING. Unless we are alone, then the feeling is just less.
These existential questions become:
– Am I Autistic, like I am an instructional designer, an artist, an entrepreneur, a former cop?
– Or do I have Autism, like I have a missing limb, a cold, a really bad blemish on the left side of my face?
– Was this last experience me or my Autism?
– If it is Autism, how do I mitigate it?
– If not, what’s wrong with me?
And they go on. If I have Autism, that implies I have no control, but I have exercised control before. Not perfectly, and I do mitigate as much as I can, but I can’t just miraculously be socially aware if my programming has a literal blind spot. You can’t expect someone with a missing limb to just up and do the thing the missing limb requires.
If I am Autistic, it implies I have choice, at best, or it is something I can control, at worst. But yet, I have no choice in how the Autism manifests itself: all I get to choose are the management techniques. To develop those requires a lot of failure. A lot of failure leads to a lot of job loss, relationship loss, and loneliness. Then, if I am tired, stressed, or distracted, those little behavior and perception managers just happen to be out to lunch. It isn’t something I can control; it is something I mitigate, and it is exhausting.
Ultimately, I am still sorting it out, but now that I have settled that one question of “Autism – yes or no,” I struggle with the thousand questions that come after. I make jokes that “I do not have Autism Spectrum Disorder, I am Autism Spectrum Empowered,” but it still hurts, is confusing, and makes me question everything I experience. Fortunately, I have an amazing advocate – my Aspie Whisperer – who helps me navigate and understand what I am seeing and can immediately recognize when I have had too much. Not everyone has that.
However, while writing this, I have made a decision: I won’t define myself as “I am Autistic” or “I have Autism,” instead, I will define myself as “I am Rick Jacobs and I have amazing abilities.” I hope others in this weird vortex of “What/who/where am I?” can find their solution. I hope if you are neurotypical, that you can become an advocate for them as they figure it out.