Where does this “Accept” and “Love” position I give come from? Why, it’s from viewing autism as what it really is: a different operating system, which anthropologists are now coming around to as beneficial to many aspects of life. Autism, like any other trait, has benefits. Sure, you’re not sitting around talking to people in a bunch of flowery chitchat, but the autistic person has real focus and drive. Most of us can cut to the point quicker than most. There are more than I can think of, but here’s the point: I have come to believe that autism is not some divine punishment. I believe autism has its purpose in this life, and society. The fact that I have to wonder if the autistic will be destroyed before we find the purpose out is what troubles me. According to anthropology, most religion, and technology, there is a purpose for autism. Do we autistic people have to be destroyed before we find it out? I hope not.
So, I went to church this morning and looked around. There were a few people wearing blue, but not anyone whom I would suspect is working for Autism Awareness. Well, maybe one, but I do not think she is particularly concerned about her one-year-old being autistic. Truth is, I am the only known autistic in the church. And here’s a photo of me after coming back.
As you can see, I’m wearing red. I have decided not to begrudge most people wearing blue today, because most people wearing blue are utterly clueless about how the #ActuallyAutistic feel. Most of them just want to do some good, and they are clueless that Autism Speaks wants to rid the world of us. (No cure is known at this time.) The only people I will call out are those like Donald Trump, who are willfully ignorant. Those who actually ignore facts that do not line up with their way of thinking. Some people may accuse me of the same thing, however. The reason I cite Donald Trump is this:
I don’t like to disrespect the President, but when he willfully ignores facts-and the fact is, Andrew Wakefield’s study was debunked and the results never duplicated in larger-scale university studies-he needs to be called out. He’s being willfully ignorant.
Enough about the President. The point it, willfully ignorant and hateful people have hijacked the conversation about autism, and we have to fight HARD to get it back to those who know it best – autistic people. We’re here, we’re autistic, get used to it.
….but not until next month. Perhaps us autistic adults can give some insights and gentle correction to upcoming mistakes I’m sure Sesame Street will make with Julia.
If you don’t know, Julia is an autistic Muppet being introduced to Sesame Street. So far, that is her major trait. Hopefully, her autism will not separate her too much from the other characters. It seems to look promising, since they are reportedly welcoming her into the fold. I’m a little concerned, though, on how Julia will be portrayed. Will her autism be her defining trait, as it often is of many shows’ neurotypical writing? Will she be looked on as less in neurotypical eyes?
The best-case scenario is as regular people who are just a little different. Let her participate in adventures. Let her experience life in groups. Give her some interests. Have her appear often and Flesh out her character. Autism is not the only thing unique about Julia, if you do it right.
There are many well-intentioned disabled or neurodivergent characters who fall flat, and even a few in unexpected places who would actually do well in reality. Of course, I think the key to a good portrayal in neurodiversity or disability (which are often treated the same by a conformist society) is a good dose of reality, inclusion and fleshing out. So many autistic characters are stymied by stereotypes that it really is tragic that one must fit this stereotype to even get an autism diagnosis. I prefer that Julia be a recurring character, at least, so she could have some time to flesh out. Good characters get time to flesh out over a series, but most characters with differing traits rarely get anything beyond their introduction and defining trait. Hopefully, we can see a development over time.
What I am trying to say is, please, don’t make Julia a one-shot. Make her a realistic child. Listen to us autistic adults. We can give you some insight.
I’m remembering a really bad movie I saw last year: Zoolander 2. More importantly, I’m remembering the Razzie award-nominated portrayal of All, the supposedly gender fluid model in an earlier portion of the movie. This is in no way a defense of the portrayal. This is an explanation of what actually is wrong with the portrayals that come up with marginalized people, especially if those specific people are not involved. The problem is this: the portrayal that does not involve actual research, involving actual people, is usually stereotyped, flat, often deviant, and almost always wrong.
Does anybody remember the 1988 movie “Rain Man?” I know that you are probably groaning right now, considering my regular readership. Most autistic people hate Rain Man and many subsequent portrayals of autism that do not involve the actually autistic. This “Rain Man” is a perfect example of what I say – that a first and many subsequent portrayals that are not involving actually autistic people. The only portrayals of an autistic person I have liked are the one by Claire Danes, of Temple Grandin, and Dr. Latham from Chicago Med. (I’m currently wavering on Dr. Latham – it seems a little checklist-driven.) The point is, a person from the margins of society must be involved for the portrayal to be whole. My problems with most portrayals is this:
Stereotypes and Deviancy
My initial problem with a marginalized portrayal is that it’s usually based on stereotypes. Remember the portrayals of blacks in the 1930s? They were usually a Mammy, a singer, or someone usually incompetent. Don’t get me started on how the black female romantic lead had to be light-skinned – or white-looking. Usually, the dark-skinned black person was regulated to the role of prostitute or criminal. It’s sad that I have to look to the 21st Century to see Viola Davis in non-criminal roles – and her resume is not even criminal free (How to Get Away With Murder, anyone?). How long before a regular actor of dark skin can escape portraying a criminal?
It’s absolutely necessary to note, back in Rain Man, that the man who is the real-life inspiration behind the “gold standard” for autism portrayal, diagnosis and future study, was not even autistic. He had FG Syndrome, a genetic anomaly on his chromosomes. It mimics autism, but it is not autism. The reason I look at Claire Danes’ portrayal of Temple Grandin is because it was much more accurate in showing how autism can actually give a different world experience, and might actually – GASP!!! – help the person. It’s a shame that a person along the margins of society cannot be given a proper portrayal unless they come out of the closet and show people how they are.
The problem with all this is: people rely on portrayals of others and their own experiences to believe the person when they come out as, say, autistic, or gay, or even with anxiety. Due to these inaccurate portrayals of the trait or condition, they usually do not believe an autistic person unless they act like Rain Man, of more appropriately, “my cousin’s uncle’s brother’s sister’s former roommate’s son – he is autistic.” The autistic person has to literally justify their diagnosis. They have to lower their competency to be believed. They have to act like Rain Man.
It’s a troubling thing I have come up with: I often wonder if I would have succeeded more, or gotten more in life, if I had not known or revealed my autism? I sometimes think that, but then I remind myself: lots of people have to hide certain “undesirable” traits about themselves, like choosing a “less black” name for a baby to make a resume more “acceptable” to certain hiring staff. (I watched an episode of Blackish a couple nights ago. Bear with me; it was a plotline.) It troubles me that people feel the need to hide their true selves. It’s a form of lying. Somehow, the truth will always out itself. A funny thing about lies: little white ones always grow and get color to them.
About lying about yourself: it’s often necessary to hide your diagnosis, or your race, or your nationality, etc. In order to be accepted to people who would judge you as “less.” So, maybe they’re partly responsible for people hiding themselves. Of course, I’m not placing blame on any system or person. Nobody gets away clean in the bigotry-and-hiding-cycle. The gatekeeper is a bigot; the person trying to get in is a liar. I think we may have to completely reject the whole cycle to get away from it. It is a big mess.
Read this poem, take it in. This is the political problem for our time – cold, hard hearts ON ALL SIDES.
Six humans trapped by happenstance
In bleak and bitter cold.
Each one possessed a stick of wood
Or so the story’s told.
Their dying fire in need of logs
The first man held his back
For of the faces round the fire
He noticed one was black.
The next man looking ‘cross the way
Saw one not of his church
And couldn’t bring himself to give
The fire his stick of birch.
The third one sat in tattered clothes.
He gave his coat a hitch.
Why should his log be put to use
To warm the idle rich?
The rich man just sat back and thought
Of the wealth he had in store
And how to keep what he had earned
From the lazy shiftless poor.
The black man’s face bespoke revenge
As the fire passed from his sight.
For all he saw in his stick of wood
Was a chance to spite the white.
The last man of this forlorn group
Did nought except for gain.
Giving only to those who gave
Was how he played the game.
Their logs held tight in death’s still hands
Was proof of human sin.
They didn’t die from the cold without
They died from the cold within.
I’m not asking you to change political beliefs. I’m asking you to open your heart.
America needs a hero.
When I reveal that I am autistic, or my mother does, we often get this response: “But you don’t look autistic!” Yes, I do. I got my formal diagnosis from the UCLA Medical Center as a child. Do you think I would lie to you? Why don’t you believe me? What does autism look like to you?
According to popular media, autism is usually depicted by a white cisgender male, and usually a child. They are often portrayed as some sort of savant as well. That is an extremely narrow and stereotypical view of autism, and it is not helpful when you reveal it to people to spread understanding among them.
Is it because I am a woman? I can assure you, autistic women exist. They often go into adulthood without their formal diagnosis, often waiting until their fifties to get this diagnosis, often when researching their own children’s or grandchildren’s diagnosis. Just because we are a smaller group does not mean we are nonexistent. That is just ridiculous to think.
Is it because I am an adult? Usually autism is given a child’s face. Also, that person is in meltdown or other extreme distress. We are not always having meltdowns. Meltdowns are usually caused by a trigger. It could be a sight, sound, smell, taste or touch. If you need something to compare the trigger to, look not further than an addiction. Or PTSD. Or various other dynamics which involve avoiding triggers to stay sane.
(The following does not apply to me, but this is often a reason people do not “look autistic.”)
Is it because of my race? There may be more formal diagnosis among white people, but there is also an existence around every known society. I recently saw an episode of Chicago Med with an autistic doctor played by somebody who was black. (Yes, I do say “black.” It’s perfectly OK to see what race a person is. What is not OK is to assign a lesser or greater value to that race.) I applaud Chicago Med for that casting choice. It gives a sort of face to an entire race of autistic people not represented in media. Not to mention that most races are given say, one token representation, and it certainly is usually not with neurodiversity. You usually have to be white for that.
Is it because of my gender identity? Is it my sexual orientation? I could go on and on about how a narrow stereotype locks many people out of perceptions of autism, or various other conditions for that matter.
(Back to what applies to me again…)
Open your minds, people. Autism is not equipped with a specific physical “look” or “act” to be obvious. A specific facial expression or profile does not exist in the autistic spectrum.
When one specific trait, such as autism, is used to describe a group of people, try not to be surprised when the traits not used to describe them vary widely. It would have to call on other traits to be mentioned in common to get a grasp of the people you are describing. Don’t put people into boxes. They don’t fit.