Diagnosed at Two, Told at Thirteen

You read that title right – I was diagnosed with autism when I was two but I didn’t know about it until I was thirteen.

Let me attempt to explain how this happened.

As detailed in my last post, I was acutely aware that I was different from others for most of my life. And from my childhood perspective, that difference was a bad one – I was easily provoked into meltdowns when I didn’t understand things, constantly under a more-than-average level of adult supervision, I had difficulty making and keeping friends, and I recall feeling ostracized by children and adults alike. This isn’t to say I didn’t have any friends or positive relationships with adults or kids– I made some good friends during elementary school, and my second and third grade teachers as well as my sixth grade humanities teachers were supportive and encouraged my love of history – but I still felt like I was inherently a bad kid because of things I couldn’t control. I would constantly ask my parents “what’s wrong with me” and they would say things like I just had a hard day and they loved me and things will turn out alright, but I’d never get a straight answer. I basically thought I was descending into madness.

Then when I was thirteen, everything changed.

I remember that day clearly – I’d had another incident at school (these were especially common in seventh grade, as some of my fellow schoolmates figured out how to push my buttons and make me explode-typical middle school interactions, as I am now aware). I was asking my mother that familiar “what’s wrong with me” question when we pulled up to our house, and she stopped the car, turned to me, and said the words that changed my life forever:

“You have autism.”

We went inside and my parents explained it further: how when I was two I wasn’t speaking or interacting like other kids, how my grandparents suggested I be checked out, how I was diagnosed at UCLA, how it meant my brain was wired differently, how it meant I needed some help in speech, behavior, and socialization, and how they had wanted to tell me long ago but were pressured by my therapist to wait, for fear that I would label myself “defective” or “disabled”, and lead to low self esteem. 

I’d call learning about my autism a double-edged sword – I finally had an answer as to why I was the way I was, but it did confirm that I was different from everyone else. My self-esteem wasn’t as strong as my therapist had hoped it would be, and this new information meant to me that I wasn’t normal and I never would be. In short, I was bad. My parents never told me I was bad and always tried to emphasize my strengths – my memory, my passion for certain subjects, my unique perspective – but still I interpreted it as an overall negative. As I get older, I’ve continued the process of coming to terms with my autism and debunking all of the negative associations I’ve had with it.  Now, I’m trying to focus on seeing its strengths. Hell, it’s the entire reason I created this blog – maybe talking about it will help me finally be at peace with it.

I can’t honestly say I’m angry with my parents or my therapist for their actions. I have every right to be, but I’m not. The therapists I’ve had have been largely good forces in my life in letting me take the lead, but were perhaps misguided in how to go about disclosing it to me. They wanted to concentrate on building on my strengths, with the hope that once I learned about my diagnosis I would be so strong and self-confident that the diagnosis would have little impact on my self-esteem. My parents, particularly my mother, were never okay with withholding my diagnosis but I get how they felt they had their hands tied by wanted to be on the same page as my therapist. My mother later told me she’d had multiple long discussions with my therapist about her desire to tell me and that fateful day she finally decided she just had to go with her gut feeling that it was the right thing to do. And I honestly don’t know when there would have been a better time for me to be able to handle such an information dump.

If there’s anything that can be gleaned from this, I’d say if you have autistic children – tell them. Tell them as early as you think they can handle it. Tell them what it specifically means about them. And above all, tell them about their strengths and how they are fundamentally good and wonderful children. Tell them they are a gift and nothing can take away from that.

No one should have to struggle with coming to terms about their autism. And hopefully, this blog will help me finally accept myself as autistic and use it as a force for good.