For a previous blog hop I wrote about how we missed the signs of autism for so long in our kids. This post I want to talk about me. Thanks to childhood trauma (sarcasm) I was in and out of therapy the majority of my growing up years. From the age of four until aging out of services at 18, I saw at least 5 different counselors for large chunks of time, several for more than a year. My aunt was a social worker. How did they all miss it?
For the record, right now I am officially depressed, have anxiety and PTSD, and unofficially I’m on the spectrum. Hoping to make that official before the end of the year.
No One Was Looking For It
First of all, it’s only in the last decade or so that enough awareness and knowledge of the spectrum has converged to the point that you’re more likely to be identified than not. And that’s still only for boys, not girls. Girls are still more likely to go unnoticed because they’re innately better at passing, plus the case studies and criteria are heavily weighted towards boys and virtually ignore girls and the different ways they present. Unless they also have a undeniable developmental and/or speech delay like Lady Bug, girls are rarely on the radar. Or if they’re causing a problem in school. But if you’re a quiet, rule following bookworm, the teachers don’t care if you don’t have friends and don’t know how to relate to the other kids. They’ve got too many other things and real problem kids to deal with. (Sarcasm, but not intended to be an insult to teachers.)
Meltdowns were treated like Tantrums
As a child dealing with undiagnosed PTSD, I had a lot of meltdowns. Triggers broke the fragile hold I had on my overwhelming emotions. Or the sheer unfairness of a certain emotionally negligent at best and abusive at worst In Loco Parentis. It never occurred to Adults In Charge that I was trying to behave the best I could. They saw my outbursts of heartbroken rage and despair as intentional and willful attempts to “punish” or disrupt the household. And they were treated with the same you-must-obey philosophy, if not the same physical punishments, as the abusive parent I had been legally removed from. My feelings were invalidated without even asking me for my why. Part of this is a generational thing, and I understood my grandparents did the best they knew how. But it was so far from what I needed. I did not get the help that I actually needed; this led to more meltdowns which only reinforced their belief that I was being intentionally bad. It was a no-win situation, and we all lost.
As an Adult I was Misdiagnosed as Bipolar 2
Excitement over a new interest and the desire to pursue learning in that area to the detriment of other areas was viewed as hypo-manic phases. Depression and anxiety were frequent because I was in a living situation that triggered my still undiagnosed PTSD on a daily basis. The doctor was so sure, and at the time I was constantly submitting to Authority, so I believed the doctor when he said that’s what I was. When something didn’t fit, I convinced myself it did. For 5 years I lived like that, always afraid of my mind and of showing interest in anything other than “normal” topics, which were safe because I had no real interest in them. I wrote about the anger and other emotions I felt when I finally realized that doctor was wrong as a guest post on a friend’s blog here. Turns out, I’m not alone in this. Because the professional world still isn’t clued in to what autism looks like in women adults, Bipolar 2 is a common misdiagnosis for them. (Sources here, here, here, and here.)
I Missed It, Too
Two years ago I was first dipping my toes into the world of autism. I read a lot, I listened a lot, I immersed myself to be the best mother I could be for my daughter. The apple doesn’t fall far from the tree and all that, but I still missed it in my boys. And a lot of the same reasons I missed it in them, I missed it in me, too. I thought gifted overexcitiablites explained all my quirks and social struggles. Even after the boys were officially identified and I had been learning about the spectrum for over a year, I still didn’t see it in myself. I said that I had some autistic traits but “not enough.” I was afraid to believe it was possible because it felt like to do so would be like trying to be one of the cool kids when I really wasn’t. I’d already convinced myself I was something else and been wrong before. I didn’t want to do that again.
Once Again, It Took an Outsider
Early this year I went to a dinner out organized by the local group of mothers of autistic children. I ended up staying late with two other gals, talking. One of them had initially introduced herself as being on the spectrum and growing up in a family of undiagnosed autistics. We ended up talking about social difficulties, eye contact specifics of what was required to keep NTs at ease, as well as other things. She commented that I nodded too much, and a little while later causally said, “oh yeah, you’re definitely on the spectrum.” It felt like a kiss on the forehead; like I was being given a gift. I went home that night and sometime soon after that took the RDOS online and got confirmation of what my new friend said. When I mentioned the possibility to my social worker aunt a few months later, she told me that a friend of hers that had a spectrum kid had thought I was ever since I was a kid. Why did no one say anything about it to me? Once again I was hurt and angry. Not that they thought that about me, but they kept the knowledge from me. Knowledge that could have helped me so much sooner. That really sucks.
It’s one thing to intellectually know why; it’s a whole different thing to accept it emotionally.
I think I’m getting better at accepting that now is the perfect time for me to find out and to know. My difficult childhood based on a non-understanding at least prepared me to be a pretty good mom to the kids I have now. (I actually wrote about that on my old blog here and here.) I’ve gone 31 years misdiagnosed and misunderstood and sadly, the right self-understanding isn’t going to stop others from misunderstanding me. But at least now I know.
This blog post has been my contribution to Hoagie’s The Misdiagnosis Initiative blog hop. For more posts on this topic, click here.