In the autistic community...and by community, I mean the #ActuallyAutistic online community, there are two conflicting dogmas viewpoints that I often encounter.
The first is that Autism is a spectrum. And it's not a spectrum as in Red is the most and Blue is the least. It's a spectrum that represents a huge variety of traits and experiences. So while one autistic person may be hypersensitive to pain; another might be hyposensitive to pain. Or while one autistic person easily gets motion sickness, another autistic person might seek out dizzying types of experiences.
The other viewpoint is that you are either autistic or you are not. There is no little-bit-autistic.
If there is such huge variety in the autistic experience and yet there is a rigid line between autistic and not-autistic, how do we decide who is autistic and who is not?
Well...I was sitting here beginning to argue with myself. Well, Dina. Duh. There are tests.
But the tests aren't full proof. For one thing. Let's say there are 25 autistic traits on the test. One person might come out as super autistic because they could relate to 23/25 traits. Another person might come out as not-autistic, because they got only 10/25 traits. But what if the latter person had those 10 traits very strongly while the 23/25 person had the traits to a very minor degree?
Or...okay, I don't fully understand how validity of tests are tested. But I do think.... they take a test, give it to autistic and non-autistic people; then say Well, look the autistic people scored higher on the test than the neurotypical people. So that means the test works!"
If in the next few months, let's say I'm asked to participate in an autism study. I would be put in the autism group * If I was asked to be in a study a few years ago, I would have probably put myself in the neurotypical group.
Yet I am the same person then as I am now. As society defines autism, it's something you have to be born with. So if I am autistic today, then I was autistic yesterday. I was autistic last week. I was autistic ten years ago.
It's all very confusing to me.
Sometimes I will get imposter syndrome when I think of a certain autistic relative. He is very obviously autistic. When I compare myself to him, I don't feel autistic. It seems really strange to put myself in the same category as him. Then I think of my sensory issues, my social issues, my special interests, my stims, etc. I think of the whole the-spectrum-is-wide idea. I remind myself that I passed most of the autism tests. I also remind myself of another relative who is also professionally diagnosed but, like me, has less obvious autistic traits. Thinking of all this, I can quell those imposter-syndrome feelings.
But then I think of other relatives who don't consider themselves autistic and have not sought out a diagnosis. They have some autistic traits, though. I mean all my relatives have at least a few traits of autism.
Yes, I do seem to have more traits than them...or my traits are stronger. Whatever. But what if the difference between myself and my so-called not-autistic relatives is a smaller difference between myself and my diagnosed super-obviously-Autistic relative?
Many weeks ago, I saw a video and read an article about this activity where autistic people could fill out this diagram to explain, via illustration, their experiences of being autistic. I think part of the purpose of the activity was to show how wide the autistic spectrum is. It looked fun. But then I read a warning on it. It asked neurotypical people to be careful when doing the activity. They didn't want neurotypical people ending up with diagrams that looked like the diagrams of autistics (or other neurodivergent people).
The article say: Keep the extremes in mind and try to understand yourself relative to experiences that would meet those extremes. Can you recall every word you’ve ever read? Are your motor skills so impaired you can’t grip a pencil or take a few steps? Is your pain tolerance so high that you wouldn’t notice third degree burns?
So...we've seemingly left the world of autism-is-a-spectrum to if-you-don't-have-these-very-extreme-traits, you're allegedly a neurotypical.
Then the article goes onto say that if you misjudge your traits, this is appropriation.
Let's see then.
If my neurotypical sister dares to compare her dislike of green peppers with my intolerance to the smell of tuna fish salad....she is appropriating my disability? Yet if she goes and gets diagnosed with autism...or decides to self-diagnose as autistic; then the comparison is kosher?
I really am not sure what I'm trying to say with all this.
It might be that it would make sense to either:
A) Make autism a much tighter spectrum. So maybe it would have my certain obviously autistic relative and someone like Temple Grandin. But people like me, Elon Musk, Greta Thunberg, Anthony Hopkins, etc. would fall off the spectrum. (putting myself in the same category as these people feels like a major delusion of grandeur. But...can't think of more mediocre autistic-people off the top of my head. I mean ones that would be recognized by the general public)
B) Keep autism a wide and beautiful spectrum. But get rid of the us-vs them bullshit. And let people themselves decide if they are autistic or not autistic or a little autistic or maybe-kind-of-autistic or I'm-not-autistic-but-I-can-totally-relate-to-autistic-people....
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| On the Spectrum! I got a bunch of very cool rainbow pictures while babysitting my parent's candy on Halloween. I should use them for all my autistic posts! |
*That's if I get my official diagnosis stamp. I passed the initial screening, the second part of the diagnosis process, and did the diagnostic interview. Now I'm waiting on the official stamp....which is supposed to happen in the next few weeks. (this disclaimer is brought to you by my Imposter Syndrome)
How would our world change if we knew for sure there was life after death, and it was easy for our dearly-departed to talk to us via the Internet?
The Dead are Online, a novel by Dina Roberts
So...here's my (probably totally uninformed and likely way off base) thoughts. I think for this spectrum...and a couple other spectrums out there... that reality is far more complex than the old fashioned, uniformed "this is good, this is bad" mentality wanted to enforce. However, I feel that there probably aren't as many gradations to the spectrum as there currently appears. However (and this is the key point) until people on the spectrum don't feel worried about being attacked, abused, forced out of mainstream, for being who they are all the gradations have to exist. Only when people feel safe to be who they really are, the true definitions will be obvious.
ReplyDeleteI don't think your comment is uninformed or off base. It sounds intelligent to me. But I don't fully understand it.
DeleteThat's what I figured. Let me try again. Old fashioned narrow minded incorrect view- there are autistic people (or gay people or whatever) who are not normal meaning "bad, crazy or other nasty term", and there are normal people. Current view, there is a huge range of autistic people and that is not a bad thing. Theory- the full scale of the range may be less than it currently appears (some types may really be the same as others) but as long as the old fashioned narrow minded incorrect view holders want to attack/ discriminate against those on the spectrum, they will be afraid to be who they truly are, and its not possible to know what the actual scale of the range is.
DeleteI think what you are referring to is what the autistic community refers to as masking. And that confuses me even further with my whole feeling of everyone -seems-autistic. Well, sometimes I'll stop myself and think..."No, that person isn't autistic. Because they have been much more socially successful than me". But then I remember masking..... Right now I seem to be perceived as THE autistic adult in our family. But it could actually be we are all autistic, and I'm just the worst at masking. Then there's the question of...if you're good at socializing, does that make you not autistic. Having social difficulties is one of the three REQUIRED traits in the DSM. But I would think having any difference to the norm would cause social difficulties. And I would think having any condition listed in the DSM would lead to some social difficulties.
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