Moving house is like stepping into a TARDIS. As you find all the stuff that’s been crammed into your rooms, you start thinking that your house might very well be bigger on the outside. Also, finding papers and mementos from times long gone feels like stepping into a time machine.
In 2014, I started seriously wondering if I might be autistic. The thought had occurred to me before, but I thought that:
- Autism can’t be accurately diagnosed after a certain age.
- If I were autistic, surely the multitude of therapists/psychiatrists/neurologists/psychologists/social workers would have picked up on it sometime in my childhood.
- Trying to use autism as an excuse for why I fail at life is deeply insulting to bona fide autistic people.
But what about that special nursery school I went to when I was a kid? I went back there last year, and there were definitely kids on the spectrum there.
I decided to ask my mother if the nursery had given me a diagnosis back then. My mother said that she was told I had “autistic traits.” She mentioned that, while packing things up for the move, she came across some of my evaluations from that time.
I found the box in the garage.
Sometime in 1983, as pre-school after pre-school told my parents that I wasn’t following orders like the other kids, it became obvious that I wasn’t fitting in. It was at that point that my mother started taking me to all sorts of professionals – psychologists, neurologists, psychiatrists, to figure out what was “wrong” with me. Diagnoses and ideas for treatment were bandied about. ADHD. Aphasia. Semantic-pragmatic disorder. (In order: hyperactivity, not speaking, early 1980’s codeword for autism.)
Due to my mother’s professional connections as a neurology nurse, I was able to attend a therapeutic nursery school, which, unbeknownst to any of us, specialized in autistic, and very bright children. Whatever they did seemed to work, because a year later, my speech was advanced for my age. That’s pretty much all I had ever been told.
I sent an email to one of the neurologists who evaluated me in 1983. She was also affiliated with the nursery, and the hospital where my mother worked. I asked her if she remembered me, and what, in today’s terms, my diagnosis would be. Autism? Asperger Syndrome? Something else entirely?
I recall you were one of those children who have autism features when young who “recover” and do very well, although they may still have mild social or other behavioral issues….Indeed today you might have been labeled Asperger syndrome or high functioning autism, labels that no longer exist in the [DSM-V]
At the neurologist’s suggestion, I posed the same question to the director of the nursery.
We felt at the time that you were on the autistic spectrum. You would not have been diagnosed with Asperger’s because you had a delay in your aquisition of language and that didn’t fit the diagnostic criteria….What made us feel that you were on the spectrum was not your language delay – that alone would have been considered a communication disorder. It was the way you used the language that you had socially…. Also you didn’t naturally pick up on how to engage and socialize with other with others – particularly with other children. This also involved picking up social cues and developing social reciprocity. Kids who are not on the spectrum, even if they are language impaired, pick up these social skills without needing to be taught directly.
All this leads me to wonder: why didn’t my parents know all of this?
In 1985, we moved from Brooklyn to a bedroom town within an hour of New York City. This meant I had to go to a new school. Because my original school wasn’t accredited (something I didn’t learn until recently), I had to repeat first grade. I already felt different because I was in suburbia, but now I was left back! To make things worse, they were going over stuff I already knew! Sure, I didn’t know how to tie my shoelaces, but I knew how to tell time on an analog clock, I could count up to 99 using my hands, I could read and write and do all the math that the other kids were just learning. In fact, there were things in second grade that I’d already learned in Brooklyn. On top of that, we were the only Black family in our neighborhood. There were other Black kids in our school, but they were bused in from the other side of town. And they thought that I spoke funny. My parents assured me it was because the other Black kids were American, while I had Jamaican and Nigerian parents.
Back to the director of the nursery:
You did a lot of “scripting” or repeating short chunks of language that you heard from people, from TV. from books, etc. …You also had “prosody” which was not typical. That is, the “melody” of language. This is difficult to describe unless I imitate it for you. It’s a kind of sing-song quality, which by the way, you don’t have any more.
Could it be that kids thought I spoke funny because… I actually did speak funny? I learned to speak by repeating what I heard on TV, the radio, and other people. I often didn’t fully know the meaning of what I was saying. But hey, Mom and Dad know best, right? Since I was the only one that didn’t fit in, and I was the only one who was half-Jamaican, half-Nigerian, and all Brooklyn, surely those must have been the reasons why I was so different.
You also had a lot of anxiety and had difficulty regulating this. Some of this was due to the difficult home situation, mainly involving your dad. I remember being told by your mom that when your father would beat your brother, you would wait outside to give him a tissue, in an effort to make him feel better. This kind of stress would be difficult for any child, whether or not he or she were on the spectrum.
So, while being neurologically different from my peers, this was happening. As I got older, I started getting beatings as well. Notice that I say beatings, not spankings. I got spanked as well, if, for example, I stole my father’s coins to buy candy at the stationery store. But I’m talking about whipping out (pardon the pun) a belt, or a piece of baseboard molding and hitting wherever my father could reach. I’m talking about riding in the car with him and suddenly getting popped in the mouth for not answering a math question correctly, or quickly enough. Or forgetting my homework. Or forgetting many a thing. I remember my father standing over me as I practiced playing a song on the organ, and him hitting me if he thought I was getting sloppy, making too many mistakes. Never mind that we’d been sitting there for hours on end. Or if my handwriting wasn’t perfect. A letter might be too large, or it might have gone below the line on the paper. I’ve ruined composition books because the force of his hit caused my pen to cut through multiple pages. Of course, that was reason for the beatings to continue.
And if I didn’t like something, and dared to complain, or show anything other than blankness? The beatings would continue until my morale appeared to improve.
At this point you might be wondering, “why didn’t you ask for help?” I did, many a time. I cried for help so many times, that I learned not to bother anymore, because nobody would listen. When it came to the word of a child with known behavior problems versus a respectable-looking professional upper middle-class gentleman, well, I wasn’t believed. At one point, the police threatened to arrest me if I called them one more time. Sometimes, I regret not making the call, not begging them to put me in jail. My father would threaten to have me put in a mental institution. After a while, I asked him to please put me there, as I couldn’t imagine being in a worse situation. He told me that I’d end up in a foster home and get sexually abused, and at least he didn’t drink, use drugs, or sexually abuse me.
No, he didn’t. That would have left physical evidence. My father was many things, but he wasn’t stupid. He was also very careful to make sure he didn’t leave any lasting marks, though I had many a busted lip when I wore braces. Except for the time he knifed me in the back, because I accidentally cut the leather of the organ bench. I still have that scar, but by the time I realized that what he did was so incredibly twisted, it was too late to do anything about it. CPS asked me questions and took pictures of it, but nothing ever came of it. My father probably explained that away as well. Emotionally disturbed child and all.
But the point is, I never got a break. I took abuse from my peers in school, and abuse from my father when I got home. My mother worked at nights, so she didn’t know the half of it. Her days off were spent either sleeping, or arguing with my father. My brother got the hell out of Dodge once he went off to college. Dad tried his hand at manipulating him from afar, even going so far as to make sure my brother had no money for textbooks. After that, my brother couldn’t take it anymore, and kept his distance for a few years. My father tried to convince us that my brother didn’t come back home because he’d joined a cult.
Eventually, my emotional disturbances landed me in therapy. None of the therapists or evaluators seemed to suspect autism. At least, not that they told me. Instead, they all tried to patiently explain that, due to the cultural and generation gap between me and my parents, I had to learn how to deal with the hand I’d been given. My parents even got family friends to evaluate me, and… nothing. I spoke to one, a school psychologist, recently, and he said that I showed signs of depression and hyperactivity, but would have been extremely reluctant to label me autistic, because he didn’t think labels were really that useful.
I’ve notice that a lot. Professionals seem to want to decide for me whether or not I’d find a label useful.
During college, I had a full evaluation done, because I suspected I had ADD (ADHD, if you will). The psychologist said that I didn’t have ADD, I just needed to be motivated. She said my IQ was “above average,” but she wouldn’t tell me the score, because she didn’t want me bragging about it. At the time, I was flunking out of college and suicidal. In my mind, I had absolutely nothing to brag about.
Last week. I’d looked up local therapists who claimed to specialize in autism, and went for an initial visit. I told the therapist a bit about my childhood, and how I’d felt ostracized and isolated. Her first reaction was that “African-Americans tend to keep to themselves.”
I then had to explain that my parents were immigrants, and that both Jamaicans and Nigerians generally value community and familial bonds.
Once again, a therapist had tried to explain away my difficulties with the color of my skin.
I hear that both women and people of color are underrepresented in the autistic community. I have to wonder how much of this is due to professionals making assumptions about race and gender, and what we can do about it.
At least I’ve figured out the first step: to make sure people know we exist.
Hi, I’m Dee. I’m Black. I’m a woman. I’m the child of immigrants. I’m a mother. I’m autistic. And I know there are more people like me somewhere.
Try not to be afraid; you’re probably not as alone as you think you are. We’ve just learned to be quiet and submissive, or we’ve just been talked or shouted over. It’s okay to shout back.