Autism and Acceptance – Of Myself

CN: Discussions of unhappy childhood, mention of institutionalization, mention of ableism.

It’s Autism Acceptance month, or Autism Awareness month, depending on who you ask. This means people like me are facing a lot of misunderstanding right now, along with obnoxious blue porch lights and blue puzzle pieces on Facebook. Rather than awareness, which has a troubling tendency to dehumanize and stigmatize autistic people, acceptance has been key to my own journey. A major aspect of autism acceptance for me has been coming to terms with my own history. I was a troubled, misdiagnosed, and unhappy child, and understanding autism and my own relationship to it has been crucial to acceptance of the way I was back in those days and in my adult life.

It’s hard to explain as an adult how much I struggled as a kid. A lot of this is because a big part of my struggle was real problems with self-understanding. I did not know why I was so unhappy, and so easy to set off into rage or tears. People would demand I explain myself, and some of my most difficult memories are of being in terrible trouble because I could not explain why I responded to things the way I did. I struggled in school academically and especially socially. I switched schools repeatedly, my parents always trying to find a place where I might fit in better, or be less miserable. My family relationships became difficult to the point that I was sent away to a residential treatment program, and even that failed when I was kicked out of the program (it was a staggeringly bad fit for me). I spent my teen years medicated, socially isolated, and deeply unhappy. I did not achieve my culturally expected milestones, like prom and high school graduation.

I was a “problem child,” a “troubled teen,” and labeled with every mental illness diagnosis in the book. Though evaluated for neurological problems on several occasions and put through rounds of psychological testing, I was not diagnosed with autism or Asperger’s Syndrome as a child or as a teen – I believe largely because by my teen years the later was only being recognized in boys, and before that neither were recognized often in highly verbal children.

My self perception, going into adulthood, was that I was a bad kid and that I would never be allowed to live an independent life. I blamed a lot of my problems, especially being expelled from the residential school, on my queerness for a long time, as a way to protect myself from the idea that I was inherently broken. If the rest of the world was too homophobic and transphobic to deal with me that was their problem, not mine. It was partially true, too – many of the institutions I dealt with WERE unfair to me because of my queerness. It just wasn’t the whole story.

This story got me through for a long time, as I matured and developed much better social and life skills. In many ways adult life was easier for me because I had more control and because adults are more forgiving of weirdness than kids are. I got my GED. I found people who shared my interests and who didn’t mind my quirks. I found jobs that were far less overwhelming in terms of stimulus (noise especially) than your average high school. My emotions mellowed. I was doing pretty well.

Then a few years ago someone asked me if I thought maybe I might be on the autism spectrum. The question had occurred to me before, but this person had good reasons to know what they were talking about, so I took it more seriously coming from them than from myself. Since then, further research and consultations with multiple mental health professionals has confirmed this. Unlike every previous diagnosis, this one fits. I firmly believe that if I was born 20 years later I would have been diagnosed as a kid, but instead mine came as an adult like man others like me.

As I got to know other autistic adults and examined the ways in which autism impacts my adult life, I also came to greater acceptance of myself as a child and teen. I now know what I did not as I was growing up – I was not a failure or a problem. Yes, I did a lot of confusing, unproductive, and even hurtful things, but now I have a much better understanding of why I could not be like the other kids. I also have a better understanding of myself as an adult, and a much easier time accepting things about me that I previously saw as deficits or flaws.

I’m incredibly glad that I was already vaguely aware of the autism acceptance movement before understanding how it applied to me, because I never went through any phase of wanting to rid myself of autism. This is who I am, and how my brain is. I am different, and it has caused me trouble – but I also see how a lot of that trouble was the consequence of other people not understanding me, not me being a bad kid. It has made a world of difference for me.

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Autism and Acceptance – Of Myself

3 thoughts on “Autism and Acceptance – Of Myself

  1. 1

    As a parent of a child who quite matches your description of yourself as a child (yes, she’s been diagnosed with a mild form of autism), can I ask you what you think would have helped you as a child?

    1. 1.1

      I’m not sure, honestly. People ask me this a lot, but my list is mostly a list of things NOT to do and those may actually not even apply to you and your kid.

      A very smart children’s mental health professional I know says one of the most important things that staff in a residential program they work with are taught is “The kids are doing their best.” I think above all else, if people had realized that I was not being awkward, unpredictable, picky, or easily upset on purpose it would have made a HUGE difference. I was labeled lazy, defiant, and naughty. If the adults around me just remembered “The kid is doing their best” it would have done so much for me.

      Adults are not going to be perfect at this – we WILL get frustrated with kids who aren’t doing what we want/expect of them. But they are not trying to be frustrating. They’re doing the best they can. I was. Your kid is too. 🙂

  2. AMM
    2

    I don’t think I’m autistic (my childhood long predates any awareness of autism), but my experience of my childhood was a lot like yours, especially the “labeled lazy, defiant, and naughty” part. Nobody tried switching schools or even sending me to a psychologist (although I did at age 11 ask to transfer from the private boys’ school to the public school, where fortunately there were too many kids who were bigger problems for them to spend much time breaking me.)

    What I now realize, having had children of my own, was that I really couldn’t do what they expected me to do, or (in some cases) keep myself from doing what they expected me not to do. I think that’s actually pretty common with kids: adults expect a _lot_ more maturity (=executive function) than kids actually have.

    It was indeed hell, and it permanently broke some essential part of me, but it did help me when I had children of my own.

    I have a son who was diagnosed at age 4 (21 years ago) as Autistic (later: Asperger Syndrome) , and from the beginning I somehow knew that when he was apparently disobedient or difficult or whatever he wasn’t doing it to be deliberate. He was doing the best he could, even if that wasn’t very good by other people’s standards.

    The time I found him (at age 3 or 4?) pounding on a crack in the garage floor with a child-size shovel and nothing we could say would make him stop, I knew that he simply couldn’t stop on his own. I had to gently but firmly peel his fingers off the shovel and take him into another room before he got any control back. I knew that he had no understanding of his emotions and had to be laboriously taught how to recognize and name them, just as his therapist had to laboriously teach him how to recognize facial expressions and, later, to figure out other people’s feelings.

    We finally had to pull him out of the regular (public) school and put him in a “gifted special ed” program. There weren’t any special “autism” accommodations, but it did have classroom aides and it was very structured. The rules were explict, which was a huge relief to him. He loved trying to game the system, but since the system was _intended_ to be “gamed,” by gaming it, he ended up behaving pretty much the way they wanted him to. (The program unfortunately fell victim to the usual education politics and was gutted and then eliminated.)

    While my son was still fairly young, we got to know a family whose oldest daughter reminded me a lot of my son. I suggested to the parents that she might have Asperger Syndrome. They instead relied on mental health professionals who called it OCD and medicated her; she finally ended up in a school that was more like a prison, complete with body cavity searches, until at age 16 or so her parents pulled her out and let her do nothing for a year. She was _finally_ diagnosed with — drum roll — Asperger Disorder. She now has a young daughter and is a doting (single) mother. The only sign of AS is some difficulty with eye contact and some oddness in how she talks.

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