June 16, 2002: Becoming Aware of My Autism

Good Friday has a special place in the mind of Brielle’s Mom, blogger at Brielle and Me, because it was the day she first became aware that something wasn’t normal about Brielle. I do not know when my parents became aware of my blindness, or whether there was a specific event that caused them to worry. I do know they, like Brielle’s parents, knew I was at risk, because they kept warning the NICU nurses not to turn up the oxygen.

With regard to my other disabilities, my parents knew about them for years before I was diagnosed. Like, when I was first diagnosed with autis, my parents told the doctor that they’d suspected it since I was two-years-old. That was eighteen years ago at the time.

I do not remeber becoming aware of my blindness at a specific moment, but with the autism, there is a specific moment which caused me to start to wonder. It was June 16, 2002, 3:50 AM. I was in my rooom, the volume of my CD player turned up, writing in my journal. On June 17, I was expected to disclose a very personal struggle of mine to my high school tutor. I had not been able to speak out of anxiety the previous Friday, and he had me come in on MOnday to write down what was going on, what caused me to fail five subjects in ninth grade because of mostly lack of effort. The reason I struggled was my becoming increasingly aware of the fact that I was never going to be seen as “normal”, and that I had to compensate for my blindness in some way. I also started becoming aware of my alters that year, but I didn’t disclose this to my tutor that Monday, or ever until several years later when he read my online journal.

Back to Sunday June 16. My father came into my room shouting. I don’t know until now, and never knew, what made his angry: the loud music, the fact that I was still awake, or what. “Are you autistic or somehting?!” he shouted. I knew better than I know now why he was saying that I was autistic, believing at the time that antisocial behavior like turning up the music in the middle of the night, is typically autistic. It wasn’t the first tiem or the last that my parents labeled me autistic or any number of other neurodiverse conditions or mental illnesses. It was the one time that the message got through. Not that I shouldn’t be up late or play loud music, but that something wasn’t normal about me. I suspect neurotypical teens sometimes play loud music at night too, so in this sense I do not know what made the comment get through to me this time. There were far more typcal signs that my parents commented on: my stimming, my meltdowns my social withdrawal and bizarre behaviors, etc. But this time, I believed my father.

I was obsessed with autism for the next nearly two years, until again it was my father who pulled me out of it. I didn’t want anything to do with autism for the next two and a half years, until my staff at the independence training home decided I needed an evaluation. I was given the diagnosis of autism on March 16, 2007.

If you have a disability, is there any specific event that made you aware of it? If you have a special needs child, when did you first realize they weren’t developing typically?

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3 thoughts on “June 16, 2002: Becoming Aware of My Autism

  1. I was only told about the suspicions about autism years after I left school, while I was at university. It had been talked about while I was at school and I was nearly referred to Lorna Wing, who was at the time one of the leading autism experts in London. In the event I was referred to a child psychotherapist who did me no good at all — she was nice but I always thought she talked nonsense and was looking for causes for my behaviour that just weren’t there. I think if they had referred me to her, the trauma of being sent to a completely unsuitable and badly-run boarding school at age 12 might have been averted. I was finally diagnosed two years ago, at age 34.

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    1. Wow, it sucks that you weren’t referred to Lorna Wing when the suspicions first arose. I too was referred to a play therapist in childhood, but my parents took me out before he could do any damage. Speaking of referrals, I too feel bad that I wasn’t referred to the top autism expert in my new city when I moved in 2007, but was instead referred to a psychologist with a general mental health agency who had less expertise and was actually semi-retired. Now that my diagnosis is questioned again, I hate it that there’s no-one who can validate it who truly is an authority.

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