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.

The Monster

In a recent post I ended by saying that I was feeling too damned good and optimistic to write my initial post idea about something I call The Monster. But of course the Monster had a reason to come back. He came back to visit today and now I'm enraged, and I can't get to the gym yet to burn him off.

What is the Monster? The Monster is a state of mind I get into when I find out I've done something wrong, or when I'm convinced that I've done something wrong. Last night my friend and I went to see a transgender musician/speaker. In between songs, I turned to my friend and whispered-- or I thought I whispered-- things like, "Oh, this one's my favorite" or "This is what I was telling you about earlier." I had no idea that anything was wrong.

Meanwhile, during the Q and A, I asked the musician/speaker about something that I've heard about-- that occasionally there are people who identify as one gender in childhood and then it changes in adulthood. I don't mean someone who came out in adulthood or someone who didn't know what to call themselves until adulthood. I mean someone whose gender identity honestly changed. And occasionally I have heard, too, about people who've identified as transgender in childhood and then changed in adulthood. I asked him if there has been any research on it. After the Q and A, it occurred to me that I possibly made him feel uncomfortable with that question, that it could be misconstrued as me implying that transgender people should suck it up and "outgrow it". I mean, it's not too unreasonable of a fear, especially since last August some people accused me of silencing rape victims with this blog post. So after the show was over, I went to the musician/speaker and told him that I hoped my question hadn't offended him. He assured me that it hadn't. Well, good.

OK, so I had taken that possibility into account, but of course I couldn't get through a social event without pissing people off. No. It never happens. The Universe won't let it happen. My friend told me today that when I commented between songs, I wasn't whispering and the whole fucking auditorium could hear me. She said that she heard people making annoyed noises. Of course it was a cue that I missed. It scares me because it makes me wonder just how out of touch with reality I am, that I'm the classic unreliable narrator.

Oh, but she was trying to help you by pointing it out to you. First of all, my friend also has Asperger's. More importantly, this isn't an isolated incident. This happens EVERY SINGLE TIME I'M IN A SOCIAL SITUATION WITH PEOPLE I DON'T KNOW. Every time I learn to keep something else in check, something unexpected comes up that I ended up screwing up on. People think I'm being serious when I'm joking, people think I'm angry when I'm not, and all around people misinterpret one thing after another about me.

As I alluded to above, a blog post I wrote was interpreted by people in a Meetup group that I was silencing rape victims. Another group (my sign language Meetup group) kicked me out. Why? They said that I was voicing too much when what I was doing was saying things to myself for clarification in my attempt to learn sign language. For example, "Oh, oh, okay. 'Dog,' got it." This apparently made the deaf people there feel unsafe. Then the straw that broke the camel's back happened one night when I ordered a large dessert and in the spirit of community tried to share it. They felt that I was forcing it on them and it made them feel alienated because I was the only one who ordered it. Four people left early because of me. But of course I had no clue that this was why they were leaving. It didn't even cross my mind.

The day after this past Thanksgiving, I went out to breakfast with my family and extended family. My cousin, with whom I'm close, announced that she was pregnant. Her aunt hadn't arrived yet, and she told us not to say anything and let her make the announcement again when her aunt came. I didn't hear her say that. So when my cousin announced her pregnancy again, I was confused. I turned to my cousin's aunt and said, "What, you didn't know? She announced it before you got here." In other words, I thought she had already known I and didn't get why my cousin was announcing it again. My cousin put her head in her hands, shook her head, and said, "Oh, God, Julie." Embarrassed over my stupidity-- I'm lucky my cousin's aunt didn't feel offended over this-- I walked out of the restaurant to cool down. I knew if I continued to sit there that I would shake and fight back tears. These misspoken words are, of course, the kind of thing that could get me fired if it happened in a job staff meeting. And I knew it. Getting kicked out of the sign language Meetup was still fresh in my mind, so this incident hit me pretty hard.

When I hear yet another bit of feedback after another fuck up, I'm not hearing "constructive criticism" or even an occasional "Don't do this". I'm hearing, "Here's yet another mistake you made." And after decades of this never-ending nitpicking from others, I just feel unbridled rage. Operant conditioning. Amygdala hijacking. That's what the Monster is: He's a intense fight or flight response that I reflexively get when I've done something wrong. My heart races, my fists clench, and I feel intense pins and needles in my face, probably from the sudden surge of adrenaline. It's anger: Anger at myself for annoying, offending, hurting, and scaring people. Anger that I have this intensely negative effect on so many people, that I'm a burden to them, that I habitually cause people distress. He comes to life in my head after I leave a situation thinking that things went well only to find out that I pissed everybody off. He comes to life after I offend people with a few misspoken words. I go into these situations reminding myself things like, "Remember, don't tell raunchy jokes" (I don't anyway unless I'm with people I know well), "Remember, phrase that question in a tactful way", and so forth. But there's always something I fail to take into account because it didn't occur to me to take it into account.

And, as you know from the opening to this blog post, often I assume I've done something wrong when I actually haven't. But if that happens it's often alongside something else upsetting people, something that it would never occur to me to think twice about. I just can't predict what's going to fly and what isn't. There was recently a situation involving someone I am in occasional correspondence with. I don't know him well, but he knows a bit about me from my blog posts, and has been very kind and helpful. That said, I would hate to make trouble for him in any way. I can't get into what the exact situation was, but the short version is that I was afraid I'd hurt him in some way based on something I had said to someone else whom we both know. I emailed him and told him that I was worried that I had done something horrible. He assured me that I hadn't done anything wrong and seemed genuinely puzzled as to why I was worried. He's been very compassionate towards me, so of course I know rationally that if I had done something wrong that a civil discussion-- not yelling, screaming, shunning, blocking, etc.-- would have ensued. But that's the exception, not the rule in my life.

And it's hard to think rationally when the Monster is in my brain, telling me in no uncertain terms that I have done something wrong. In this recent case, it was almost like watching a movie, all these possible scenarios of what the outcome could be running through my head. I wouldn't go so far as to say I heard literal voices, but there is a nagging voice of sorts in my head when this happens. And I'm sorry to say, it's usually the voices of my parents, Mom especially. They only really started to get what it was like to be me about 6 years ago, and before that I heard endless feedback about fuckups in social situations that sometimes included phrases like, "That's abnormal", or "What's wrong with you?" or "I can't believe you said/did that", "I'm wondering where I've failed as a parent.", "You never take advice," "You don't know how to interact with people", "You make people uncomfortable", or any number of phrases that start with the word "You". After decades of conditioning, it's hard to shrug that off.

Today I'm just very angry. Tomorrow I'm going with the same friend I saw yesterday to see a production of Hamlet at Wellesley. That's how the subject of my talking came up. OK, fine, I won't talk during the show.

But don't be surprised if I'm back here tomorrow reporting another social mistake that I made.