Neuro-atypical

Early eighties. Mississippi. I was probably in first grade, no more than second. Seven years old. Mom, dad, baby brother. Room full of toys. The usual kid stuff.

Came home from school one day and my parents showed me this photo. “Who is this?” they asked me.

“The babysitter?” I guessed.

Nope.

Bits and pieces of the story came out over the next several years. I had a mother, and I was not living with her. My parents had divorced when I was very small (my father remarried when I was two, so we’re talking way back) and Mom had me at first, but then Dad started hearing reports from his hometown about Mom not doing right by me. The final straw was when she approached him about letting her new husband adopt me. I was due to visit him not long after. Dad’s sister Matilda picked me up from Mom’s and turned me over to Dad and Dad just never took me back.

It went to court and I never heard a lot of details about specific things Mom did except for a bit about how she’d stay in bed in the mornings with her husband or whoever and leave me to my own devices. The specific picture they put in my head was me at two or three years old sitting on the front steps eating cereal straight out of the box. I also apparently pottytrained late and I had odd little quirks, like repeating after myself and referring to myself in the third person.

Whatever else was going on, according to my father the judge opined that Mom had basically “cut her own throat” (Dad’s exact words) with her testimony. Mom’s version was that of course Dad won custody since he picked a Mississippi court as the venue, and Mississippi was forever giving custody to fathers. I suspect the truth fell somewhere in between.

I remember the repeating after myself. I caught a lot of crap about it once I was living with Dad and I remember my bonus mom, Reba, slapping me for doing it. I also remember a weird habit of curling my upper lip and how Reba would stand me in front of a mirror to watch myself doing it in order to break the habit.

Well? It looked weird, but it felt good. I did stop, but it hadn’t been hurting anything.

What I did not remember was my mother. I had really vague memories of a woman with long brown hair, and I remembered her mother because Mawmaw had been through a house fire and one of her pinky fingers was permanently curled as a result — I remembered the finger. But those memories were about it. Poof. Gone.

Being reintroduced to her was weird. What happened was she had been granted visitation when Dad won custody, and then Dad got transferred to the Philippines. It would have been a hardship for Mom to visit me or me to visit Mom anyway, but Dad didn’t even give her our contact info — he just sort of disappeared me. I vaguely remember Mom mentioning hiring a detective and I don’t know if that’s true (if it is, whoever she was dating or married to had probably paid for it) but whatever the case, after we returned to the States in 1981, the gig was up. Mom found us and threatened to take Dad back to court. Dad caved. Mom came to visit with my new stepfather (not the same one who’d wanted to adopt me) in tow. What amazes me is that Dad let her come to our house. But it worked out pretty okay. It just felt to me like meeting a stranger.

The whole thing always bothered me and I spent a lot of years vacillating between wanting to go live with Mom and feeling like it would make me disloyal to Dad — like wanting my mom was something wrong. And no one ever told me the entire story of what went on and why Mom lost me. You’d think someone would have sat me down in the thirty-four years I have been an adult, at least, but they have all apparently had better things to do. God, even a letter. I don’t know.

I had an odd little breakthrough in the early/mid-nineties. I told you in a previous post here about my friend John back in the Army. He and I were sort of the problem children of our hospital division — me more so than him, but both of us kept getting bounced back and forth between the admissions office and the outpatient records room. For a time, we were both working evenings or graveyards in the admissions office, and we got to chatting about my weird early childhood. I told him about my little quirks and everything.

He looked thoughtful. “Hm. I wonder if you might have been autistic?”

I think I had heard the word by that point, but I was fuzzy on what it meant. Anyway, no one had ever told me I was autistic, so I thought probably not.

Well. You know how everyone seems to endlessly talk about their health issues on the internet anymore and it pisses all of you off because it looks like wallowing? I have to say, hearing autistic people talk about being autistic has been rather enlightening. I am not so sure anymore that that wasn’t my problem.

Isn’t. It doesn’t go away, y’know. You just learn to cope with it.

The thing you have to understand is my parents treated me like a walking fucking problem from the time Dad got custody onwards. Everything I did was wrong. I was weird. My talking was weird. My school behavior was weird. The way I played with my brother — when I ever played with my brother — was weird. The way I interacted with friends — when I had friends — was weird. My parents even scolded me for not looking them in the eye when they were talking to me. I know this is a thing with kids anyway, but they seemed particularly angry about it so I must have been avoiding it to an unusual degree.

Stimming? Yep. Texture issues? Yep… both food and clothing. Big on routines? Yep. Mentally short-circuits when routines are disrupted? Yep. Social difficulties? OH yeah.

That’s the obvious shit. I’m trying to figure out how to express in language how I experience the world because I’m pretty sure that’s also odd. Like, it can feel like there is this wall of fog hemming me in, and I don’t mean depression. It’s like I’m just in this safe little shell, and I have to be careful because if I get too comfortable in it then years go by in a flash and then I’ve wasted my life. I have to get conscious of the shell and sort of push it out to give me more room so that I will want to experience more of the world. And I couldn’t even do that when I was younger. I hardly knew the shell was there. I just knew I felt shut out of everything.

The biggest tell, to me, was when it finally occurred to me to bring up the possibility of my being autistic to my best friend since age eight, who is now a trained social worker… and… she didn’t scoff it off. She also hasn’t said “yes, Dana, you are autistic.” It wouldn’t be her job even if she could ethically be my social worker, and she can’t. But she tries to encourage me to do things like go to vocational rehab, so… there you go.

Figuring out why I went so long without a diagnosis was enraging. Never mind Robert fucking Kennedy Junior. You know why we have had such a huge uptick in autism diagnoses? They’re not increasing as much in the child population as you might think — they’re happening in grown-ass women. Because we got completely overlooked as little girls. Because it turns out that you can teach a mildly autistic child how to at least pretend they’ve got social skills so that they can at least sort of get along in the world, and adults teach girls social skills anyway while letting boys run wild. This is still happening today. It was about a hundred times worse in the seventies and eighties. So our autism was never as obvious as it was in boys, who were already uncultured little hellions but when you add in complete lack of awareness of social mores because you’re literally blind to them unless they are explained? It’s a mess. But girls were taught. So we were largely able to mask our shortcomings.

Largely. Other kids could still tell and they made our lives hell. I never could figure out what the fuck I was doing wrong. I just knew I wasn’t being treated fairly and I often had something to say about it, which just made everything worse. I had friends in school, but they were usually the other school rejects. Which is fine. They were perfectly okay kids. They were just weird, like I was. Maybe not in the exact same way I was, but you know schoolkids. Any little deviation is occasion for punishment.

It hasn’t been much better in adulthood. I have gotten to the point that I basically do not trust people because so much of what “normal” people do is fakeness in the service of obtaining or keeping social status. I can’t trust that someone actually likes me even if they say so. I can’t trust that someone’s telling me the truth or, if they are, that they’re doing it for the right (i.e., not psychotic or bullying or both) reasons. I have just about sworn off dating, even if men still found me attractive (and they don’t), for similar reasons. I’m trying not to be excessively bitter about it (some bitterness ought to be allowed for, you would think?) and I finally get that I can’t change other people, which is not a lesson I was willing to learn thirty years ago. I’m trying to figure out hwo to fit into a world where there is no place for me and actually sort of enjoy the ride because I’m not attached to people getting out of the asshole habit anymore. Positive cynicism, maybe? Yeah. Like that.

Also, I think I might have figured out the whole thing with my parents. The latest thinking on autism seems to be that it is inherited. Well… my dad has the rigidity and the texture issues and I am very, very suspicious that his lifelong alcoholism has been primarily about navigating social situations. Mom had some weird stuff going on too. So I am probably not a novel mutation. It’s too late to fix things with Mom. Hell, it’s too late to fix things with Dad. If I told him, “hey, have you ever considered getting screened for autism?”, he’d tell me to fuck off or that he’s too old for screening to matter or some bullshit like that.

I understand the thinking that one is too old for screening. I feel like if I tried to get screened I would overthink the testing process and it would come out weird, or if I did everything right and got a diagnosis it wouldn’t make one lick of difference. We can’t get employers to respect physically disabled people. We had to pass a federal law to bully them into the bare minimum. Add to that the fact you’ve got fad-followers claiming autism when their actual problem is they’re just assholes and it just muddies the waters. Diagnosis might help me but it’s just as likely it wouldn’t.

On top of that, I suspect a touch of ADHD. I’d leave the H off but I think they’re trying to say now that it doesn’t always mean literal hyperactivity, that it can be an indication of how the brain tracks things… I dunno. I’ve been afraid to look into it too far, and I don’t want to go on meds. We tried the brain-meds thing when I was fighting depression in the early aughts and that just messed me up. It might explain the way I can’t just quit caffeine, though. Oh, coffee. Ah lurrrrrrves yooooo.

Well, there you go. None of this means I actually am autistic, of course. My answer has to be “I suspect, but I don’t actually know,” but I’m bringing it up anyway because off and on I have tried to make sense of this and have reached out to my bonus mom about my early behavior only to not get a reply back. (Interacting with her has always been a bit random. She replies when she wants to, then wanders off again for months at a time.) But it’s a thing that is possible, and would certainly explain a lot, and — not to sound like a TikTok reel — I wish more people understood that it just takes too much fucking energy and planning to be this out of step with society one’s entire life on purpose. It wasn’t. This is just me.