I'm currently recovering from a nuclear meltdown that started over 48 hours ago. I'm angry and I'm probably not 100% out of the woods yet. That may be the reason I'm writing this article.
95% of the time, when I tell people that I'm autistic they either tell me they don't think\believe I'm autistic or they say, "I would have never guessed". Well, guess what? A year and a half ago or more, if anyone said to me, "I think you might be autistic", I would have told them they were out of their mind, and that I wasn't autistic, so I get it. I understand the skepticism.
I understand people have seen me do things that they don't think autistic people can do. But I fall into a smaller category on the autism spectrum. It's a category with very specific requirements
Over the last year, I've met others that are in the same category. And they face the same skepticism and struggle just as much with autism as I do. It's always a relief to talk to people like this because they understand exactly what you're saying.
Here are the requirements for this specific category:
Autism (obviously).
A High score Performance IQ, or non-verbal intelligence: I don't believe that IQ is, or should be, the sole metric for intelligence, but this particular type of intelligence is a requirement for this category of autism.
Undiagnosed and unacknowledged autism until later in life: This is a complete unawareness about one's own autism until later in life. This is an important requirement because it's the cause of or exacerbation of some of the other requirements.
Repeated trauma: Any autistic that is undiagnosed undergoes repeated trauma. We can't fit into a world that everyone else can and we don't understand why. A lot of undiagnosed autistics also suffer from other repeated traumas, incidentally, for the same reason, like emotional, physical and mental abuse. This happens because they are viewed as choosing to be the way they are as opposed to possessing different processing mechanisms than almost everyone else and it's typically perceived as defiance, obstinance, stubbornness, and an inability to compromise.
The effects of being in the category of autistics that I've described above have profound impacts. A prominent impact is the skepticism we receive about actually being autistic, which I described at the beginning of this article. Here are a few more common experiences for autistics in this category:
Misdiagnoses: Because the individual's negative behavioral manifestations are not attributed to autism, doctors are left to draw the wrong conclusions about the root cause of the behaviors. Since autistics in this category have a high Performance IQ score, they are typically articulate and they themselves don't have a valid explanation for their behaviors. We don't know why we act the way we do, or why we can't control it. Without awareness of our autism, we're left to think that something is wrong with us. Many of us receive several, varied misdiagnoses throughout our lives.
Development of mental health issues: As we navigate the world assuming that we are just like everyone else, but not understanding why we are horribly misunderstood, ostracized and isolated, it becomes difficult to reconcile and can lead to depression, worse anxiety (we already have tons of anxiety), and other mental health issues.
Expert-level masking abilities: Due to the high Performance IQ score, our brains are able to adjust, compensate, and somewhat assimilate via mechanisms we aren't aware of. Our brains start doing this for us at a very young age. We slowly begin to see the depths of our masking and the Herculean efforts we maintained to appear "normal" to everyone else, only after we realize we're autistic. Prior to our autism realization, we did have some minimal awareness of things we had to monitor so that people wouldn't find us too annoying.
Autistic traits become more and more prominent: This is attributed to the autistic burnout that is experienced from decades of unknowingly masking our autistic traits. When the mask cracks it becomes harder and harder to put it back together. And after the mask cracks the first time, it continues to crack, more and more frequently, but pieces of it are lost every time it's reconstructed and we become more and more aware of the toll it takes on us to put the mask on.
Friends, family, and loved ones are lost: Due to the skepticism, people view you differently. Some think it's a cry for attention. Some think that you're hopping on a trendy bandwagon. Some think you have no reason to complain (i.e. look how capable you are, look how successful you are). There's a plethora of thoughts people will have when you've told them you're autistic and they don't believe you. Due to the pronouncement of autistic traits, and decreased making abilities, people think that you are not the person they thought they knew. You act like a totally different person to them, yet inside, you feel the same as you ever did. They're half right though because we didn't know who we were or that we were pretending to be someone else. Regardless, the negative reaction by people you care about to who you truly are is not pleasant, and ironically that negative reaction is precisely the reason our brains built the mask for us. It was a survival mechanism.
Before I was aware of my autism, I probably would have doubted someone like me saying that they were autistic also. I probably would have assumed that it was a poor excuse for some behaviour or eccentricities. Or I would have assumed that they were generalizing the term and didn't really mean that they were autistic.
But now, if you put me in a room with one thousand people, and two of them are on the spectrum, I can tell you which two within five minutes. And any autistics above a certain Performance IQ threshold will identify me just as quickly.
Autism is a spectrum. The spectrum is defined by the "detriment" autism causes to the individual, but the underlying neurological causes, mechanisms, and conditions are the same. What most people, doctors included, don't take into consideration is the entirety of one's neurological composition and environmental elements like being undiagnosed, trauma and trauma caused by being undiagnosed.
Here's the bottom line: If you're not autistic, you don't know what it's like to be autistic, so don't ever suppose that you know who is and who isn't autistic based on your perception. It's an extremely ignorant stance to take.
