Progress in the 21st Century

I often tell people that I was born in the wrong decade.

I look at autistic kids who were born in 2000 or later-- a good 20+ years after me-- and I envy them. They were born into a world in which unprecedented progress in the understanding of the human mind-- professionally and publicly-- has increased exponentially since I was a kid. They get individualized education plans (IEPs) based on their needs. Does the kid have auditory processing disorder (a condition often comorbid with autism)? They'll will be seated at the front of the classroom where they will be less likely to be bombarded with extraneous noise that would otherwise make it difficult for them to process the teacher's instructions. Does the kid miss social cues? No problem-- there will be time set aside to work with the kid on social skills, and the teacher will forgive the child for missing something that most of the world takes for granted. Does the kid have esoteric interests? Well, then the teacher had better at least try to understand them instead of dismissing them. Does the autistic kid do better working alone than in groups? Then the kid will be allowed to work alone even when the rest of the class is working in groups. And if there is a project where groups are mandatory, the teacher will handpick students that they know will get along best with this kid. Is there bullying? If the teacher tells the student to "just ignore" it, then a lot of people will think the teacher is ignorant.

If only "autism" had been a word in the '90s, at least outside the context of Rainman, then my life would have been much different,  my childhood less of the nightmare that it was. Between the kids that bullied me emotionally and physically, the sometimes-callous teachers who told me to "just ignore" it, and my well-meaning-but-tragically-misguided parents who thought they needed to change me, my life was often a living hell. My parents get it now and realize that they made some serious, non-trivial mistakes. But even today I wake up screaming from nightmares about being a kid and arguing with my mother about certain things about me-- such as my androgynous sense of gender and concurrent gender expression-- that I knew were never going to change. My parents thought they were helping me, but the reality was I often did not feel completely comfortable in my own house. As a teenager, the only place I felt comfortable was my progressive overnight camp. Today, I compare it to the way Harry Potter felt going to Hogwarts.

I was born in 1980. As much as I complain about growing up in the '90s-- what I refer to as the final decade of the dark ages-- I realize how much worse it would have been had I been born in 1930, 1950, or even 1970. I look back at the way autistic people (or people who in hindsight probably were autistic) were treated in decades and centuries past and find myself getting infuriated. I think about how often people were institutionalized, sometimes just for having unpopular opinions. An autistic person having a meltdown? Forget it. Whereas today we better understand that a meltdown is the result of extreme frustration that most other people don't experience-- and NOT the same thing as a temper tantrum, which is something a child does to protest not getting their way-- what did people think it was 100 years ago? Or 50 years ago? Probably insanity, grounds for institutionalization. Hell, even in the '90s, people dismissed my meltdowns-- which I tried VERY hard to control-- as temper tantrums. I didn't have the words for them, but I knew that's not what they were, and I felt insulted as a teenager when people dismissed my genuine hurt and frustration about a certain situation (usually a social issue) as a temper tantrum.

I think about the ways people with other disabilities were treated. Deaf? No sign language for you! You'd better learn to read lips! Gesturing, let alone a gesture-based language- isn't normal! This was as recent as THE GODDAMNED 1960s, as illustrated in the film Mr. Holland's Opus. 

These poor old souls, what they must have gone through in a world that didn't want to even try to understand them, let alone accept them.

But, to quote Dr. Jack Kevorkian, "That's the way the world runs. It advances slow, and somebody gets burned-- badly."

But it advances, and that's what's important. I'm immediately suspicious of the mindset of someone who laments about "the good old days" and rhetorically asks, "What's the world coming to?" The good old days when autistic people were locked up? When deaf people were not allowed to learn sign language? When black people were legally segregated?

What the world is coming to is progress. Change seems scary to some people, but change is going to happen. Does some change worry me? Yes. We are making significant leaps in artificial intelligence technology. I can think of a million things that can go wrong. I think of all the sci-fi stories about intelligent robots killing humans. But I also see AI as being something that can do a lot of good. For one thing, it's probably easier to teach a computer than a human to be unbiased when interviewing an intelligent but socially awkward autistic person. It will be difficult to teach the computer, because computers are made by humans after all, but I'm confident that we'll get there. One time, my grandmother was talking to me about how the idea of AI scares her. I asked her what she thought about how we have a device that can fit in our pockets and that has access to an unbelievable amount of information. She said she thought it was interesting. I asked her what she would have thought had someone told her in the 1950s that this device would eventually be invented. She said it would have scared her.

Well, there you go. Despite all the problems that exist in the world (the asshole in the White House, climate change), we are overall living in the best of times. As we prepare to enter the '20s, let's make them the Roaring '20s... Roaring with progress, that is.

They are Hurting

I was thinking about some misunderstandings that I experienced while growing up. I think it's important that I share them. I hope this brief list will help clarify to parents what they are seeing in their children with Asperger's:

Children with Asperger's generally don't scream and throw things to get attention. Often they are frustrated because of how the world doesn't understand them. 

They are hurting.

Children with Asperger's don't hit themselves or engage in any other kind of self-harm to get attention. They are frustrated at the world for not understanding them and angry at themselves because they feel they can't do anything right.

They are hurting.

Children with Asperger's Syndrome who cry at the drop of a hat are not necessarily "immature". They are phenomenally frustrated and there is only so much frustration they can take.

They are hurting.

Children with Asperger's Syndrome who retreat into themselves are not doing it because they are immature, rude, or "not brought up right". They have too many emotional scars, possibly from bullying, and are afraid of experiencing further problems with others.

They are hurting.

Children with Asperger's Syndrome who storm out of a room in anger to get away from people who are frustrating them are not spoiled, selfish, immature brats.

They are hurting.

Children with Asperger's Syndrome don't hit the kid who was calling them names because they're "psycho". There is only so much they can take before they fight back, even physically.

They are hurting. 

Children with Asperger's Syndrome who cry because they were the last to get a lollipop are not upset because they're just immature and have to learn that they can't always go first. Rather, they are tired of being last at everything, left out of everything, even in a situation as trivial as this. 

They are hurting.

Children with Asperger's Syndrome are not crazy.

They are hurting.

I can only imagine how many people with Asperger's Syndrome were institutionalized back in more ignorant times. Those poor, tortured souls. Sometimes I imagine I would have been institutionalized had I been born in 1950 instead of 1980.