For at least as many times as there have been days in my life, I have forgotten a simple truth: not everyone perceives the world as I do.
A common trait, if not a defining one in autism, is not being able to understand what most people instinctively know about human behavior and communication. There are times it takes me literally a year or more to sort out a social norm or basic interactions that most people, even many children, do without thinking. Occasionally, I never figure it out, but I keep trying, hoping I will. Or, someone eventually points it out to me, but that requires a good deal of frustration on both ends, often ending poorly.
To counter misunderstandings, I’ve argued a diagnosis is good, and we should apply it in the same way we would label an avocado; that’s a thing and this is what we call it. However, my silly optimistic autistic brain forgot that most people just don’t care as much as I do about a “proper” definition of the word “label,” much less the label itself. Do they care what my diagnosis actually means? Not everyone does. It makes no sense to me, but that’s why many of them are not autistic. Should I pity the poor neurotypicals for their carelessness with definitions? That would be condescending, so I’ll just be as confused about them as they are with me.
My preoccupation with defining a “label” has become somewhat of a “special interest.” It makes perfect sense to me, and it’s fun to contemplate. However, even if I’m correct — and this is what is ALWAYS so darn hard — it has nothing to do with people agreeing with me.
No amount of research and data will change the minds of people who don’t care. That’s true throughout the history of humans. From a scientific standpoint, a certain amount of dishonesty and “suspended disbelief” might be good for our species. It’s what makes both Yoda and Jesus compelling. Hmm . . . That’s a good topic for another post.
Therefore, the problem isn’t the labels. It’s people. We make, use, misuse, ignore, confuse, abuse, and change labels. Many autistic people get wrongly diagnosed for years. A correct diagnosis is critical for proper treatment. However, that will not always translate into understanding from others.
Now, here is your exceptional flavor of autistic irony. It is precisely because I didn’t fully trust my various diagnoses that I wanted to go through the autism testing and diagnostic process. This was not a sudden event, as I didn’t trust my intuition and did not want to be wrong. It took almost ten years of research, collecting information from relatives, waiting through health difficulties and a global pandemic, before getting a complete and official diagnosis.
At this time, my conclusion on labels is sadly familiar to my autistic experience. A diagnosis doesn’t really matter if people don’t truly care about you. And, if they don’t care, they likely view your legitimate diagnosis as nothing more than an excuse to give you some thoroughly unfair and dismissive label.