In late 2017, just before my 53rd birthday, I got tested and received my diagnosis of Level 1 Autism, formerly known as High-Functioning Autism, formerly known as Asperger’s Syndrome.
I can’t say why they got rid of the Asperger’s label. As for “High-Functioning,” that label is going away partially because it’s ableist. But it’s also inaccurate, for I am not always high-functioning.
At any rate, when I tried to find information online in an effort to get help, I was met with the hard fact that there is not much out there for Autistic adults. There is a TON of info about Autistic children, followed by info about Autistic women.
Because, in America, men are supposed to be manly and tough it out, I suppose. Along those lines, it would make no sense for an Autistic man to hide it, primarily because we can’t. Autistic men are WAY more open about their emotions. So I don’t know why this is the case.
Today, I’d like to touch upon the positives and negatives of getting a late-in-life diagnosis. I’d also like to go over a few ideas or misconceptions that I’ve learned about.
Of course, this is NOT a replacement for actual therapy, or a proper diagnosis.
These are just a few of the myths that I’ve personally heard about Autism, some of which came from people who were unwilling to accept my professional diagnosis.
We are not geniuses: Some might be. I do have some strong memory, spelling, and mathematical abilities. But, no, we are NOT all like Rain Man.
All Autistic people are the same: Nope! There may be some general things. But Autism lives on a spectrum. Given the fact that every person is different, it stands to reason that every Autistic person has a unique experience with their Autism.
Even the experts don’t know it all: I had a NeuroPsychiatrist in 2020 want to evaluate me to confirm my initial diagnosis in 2017. He said that it did match up. However, he had a problem with it when I told him that I’m a multi-instrumentalist musician.
Basically, he told me that was odd, because, “Autistic people are generally NOT creative.”
This sounded strange to me, so I had to reply, “Ah, you mean like Edward Van Halen, or Gary Numan, or Mozart? Are you suggesting that Autistic people might not enjoy the mind-numbing repetition that comes with learning a musical instrument?”
He decided to dismiss his previous comment, and we moved on.
Autism is not a synonym for retardation: I know, this is not a positive word to use. To be fair, I am not using the word as an attack on others, or as an insult or pejorative. But it’s what is implied online, when people use “Autistic” as a slur or personal attack.
In some cases, an Autistic person has a higher-than-average IQ. Having a decent IQ isn’t enough in our world, where you also have to have charisma, social strength, popularity, and other things that escape the Autistic mind.
It must be understood that Autism and mental retardation are two completely different things.
NEGATIVE ATTRIBUTES OF A LATE ADULT DIAGNOSIS
When I first got the diagnosis, and learned just a bit about what it meant to e Autistic, my life suddenly made sense. I understood every bad social situation. I got every bad thing that happened to me in school, but not to everyone else. I understood why I’d not make friends, or why some women would avoid me. I learned why I attract Narcissists and destructive people. I understood why I couldn’t ever keep a job for longer than 3-5 years.
Everything made sense.
I understood why it felt like things were physically boiling beneath my skin in certain situations. I knew why I had stress in situations that don’t bother other people. I figured out why I was so exhausted when at a party meeting people, and why I felt energized when I’d hide in the coat room for a half hour. I learned why I had to do things a certain way.
This personal enlightenment was followed by the hard reality of it all; that it felt like a life wasted. Would my life have been different? Probably. Would it have been better? It’s hard to say. More about that later.
But realizing that early detection is key, that early detection happens by age 3, and that I missed that boat by HALF A CENTURY can be frustrating, angering, and demoralizing.
And NOT ONE person ever said anything to me about it.
Since there is no cure, and I’ve wanted one, my Autism is something that I have to accept and live with. There isn’t much that I can do about any of it.
POSITIVE ATTRIBUTES OF LATE ADULT DIAGNOSIS
One of those is noted above, in that my entire life suddenly made sense. In my case, my Autism helped me find happiness with music. I would not have had the adventure in life that I’d had without it.
For me, there is also positivity to be found in the fact that an early diagnosis for me would not have turned out well at all.
I watch a guy on YouTube named Vaush. He’s around my son’s age, but he was diagnosed as Autistic when he was very young, after his parents took him to a professional for evaluation. This was in the late 90s, which is important.
His parents were told by the person evaluating [could be a Psychiatrist or NeuroPsychiatrist] that he DID NOT want to give this young man an official diagnosis, because he would be treated differently by the system, and might not get the education that he needs or deserves.
This got me thinking about where I went to school We had Kindergarten thru 12th grade in one building. But there was this trailer in the middle of the U-shaped structure.
This trailer was where they kept the “special needs” kids. There was mental retardation, Down’s Syndrome, and severe troublemakers. Their “education” involved lots of field trips and sitting around, burning time. It was like modified institutional babysitting.
They were the kids on which society had given up.
Had I gotten a proper diagnosis in the late 60s, it would have been worse than what could have been the case for Vaush in the late 90s. In the 60s, they did not know as much about Autism as they do now.
However, considering the “education” that I got growing up, I wonder if that would have made a difference. I have already been able to determine that I would have had a decent enough of a life had I left school at 15.
It was bad enough that in Kindergarten I was almost failed and deemed “retarded” because I wasn’t getting certain coloring projects colored properly. They figured that I was a rebel, or maybe I was stupid.
What they DID NOT consider was that the cruel kids in the class, lead by wealthy elitist Mike Bauner, ripped the labels off of my oversized crayons in Kindergarten. As a result, I struggled with certain colors. It would not be until 2nd grade that I was tested and diagnosed as being partially color-blind.
In regard to proper diagnosis as a child, based on what I know and can guess, it seems that I’ve dodged a bullet. Maybe. That’s the thing about evaluating the past with eyes of the present. One can never really know the outcome of anything like this.
Even though I cannot realistically predict any specific outcome based on the past and “what if,” I suspect that I will have no choice but to accept my late diagnosis. The alternative is to remain upset about the sensation that mine was a life wasted.
IN THE END: A GIFT?
I want to end this particular entry with a word about Autism being a “gift.” I must admit that I got VERY angry when the therapist who tested gave this word a mention.
It was right after I felt relieved about the diagnosis, telling him, “Good. Now that we know the problem, we can fix it.”
He laughed and replied to my statement with, “There is no cure for Autism. Besides, why would you want to cure it, when it’s a gift?”
My response to that didn’t even require thought. “Because it’s a shitty fucking gift that has gotten in the way of friendships, relationships, jobs, opportunities, and EVERY SINGLE THING that I have ever tried to do with my life.”
While it is negative in that regard, it has a positive in that it is probably what drives my brain, as well as my music and my writing. It puts a certain color on the good things.
The problem with all of this, of course, is that American society is HIGHLY judgmental of people who do not have great success in their jobs. I’ve never had a job for long. I never made huge money. I never owned a home or a new car. I have NOTHING in the way of retirement, at all, and have been unemployable for the past six years.
Those are just a few examples of how it gets in the way. But to the point, when a person looks at me, they typically see a loser and a failure because I didn’t achieve financially, and don’t have a flashy title or a position of power.
Not only do I have to accept myself and my diagnosis, but the struggle also includes learning how to accept the fact that the majority of people in our society will consistently either misunderstand me, or judge me harshly before dismissing me.
They’ll say I’m stupid or lazy, when neither of these is true. They don’t understand, and they don’t care to understand. Some even call it an “excuse.”
My challenge is to ignore their words, acknowledge their stupidity, and live with being the outcast.
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