When I Talked With My Mom About Growing Up Without an Autism Diagnosis
My parents have always been reluctant to recognize or admit that I have a disability. It wasn’t until recent years that my mom even started tiptoeing close to the word “autism” and taking a peek at it. My dad, on the other hand, still doesn’t like to acknowledge it. And my brother, especially not… he doesn’t even think autism exists!
Right after I got my official diagnosis, I “accidentally” left a copy of the paperwork, along with an article about autism and executive functioning that came with it, out on the table. To my surprise, my mom took the bait and read it. It seemed to make a big difference, as it took away all of her doubt that I do, indeed, have autism.
So the other day in the car, I don’t exactly remember why, but I started a conversation about it. I was interested in seeing what my parents, and others, thought of me when I was a young child. (My Auntie Em mentioned that she knew something was a little off about me the first time she met me, which was when I was about 1 and a half years old. She had brought my cousin BT, who was a year older than me, to play. She noticed I didn’t really acknowledge him a whole lot… and that I was “in a capsule.” So I wondered who else had noticed something about me!)
Here’s how it went, as best as I can remember.
Me: “Was I different from other babies? Did I cry a lot?”
Mom: “For a long time you were very sick and just wouldn’t get better. You had ear infections, and then you had a horrible rash that wouldn’t go away. So you cried a lot, but it was because you were always sick.”
Me: “But was I different from Bro?”
Mom: “You and Bro were total opposites. You just had completely different personalities. Bro is a lot like me, and you are so much like your dad.”
Me: “How was I like Dad?”
Mom: “You were so quiet and serious. Most babies smile and laugh and coo. You would not. You would just sit there. Nona called you Sobersides. Sometimes we could get you to smile a little half smile.”
Me: “Bopop said that Uncle Drew and Aunt Bea would [try] to make me laugh, and I’d just watch them, and once in a while I would just sort of chuckle. But nobody thought that was a little weird?”
Mom: “We just thought you were so much like your dad.”
Me: “I learned to talk really early, right? And I learned to read early?”
Mom: “Yes, you did.”
Me: “Was there anything about me when I was a little kid that made you think I was different?”
Mom: “Not really. You made eye contact, you played with other kids and everything like that. You did used to have really bad tantrums; you’d cover your ears and scream. That was a little weird. But it didn’t really start becoming obvious until you were 8 or 9. But back then, we had never heard of autism. We didn’t know what autism was. And even if we did know what it was, there would have been no services, nothing to help us. There was nothing. In some ways I think you were lucky, because you were never labeled while you were growing up.”
Me: “But I got in trouble a lot. I got yelled at a lot.”
Mom: “Yes, there is that. And I think the reason it started becoming more obvious was because you had some really crappy teachers who picked on you right along with the kids. I remember sitting in meetings with those teachers and thinking, ‘Don’t think you know more about my kid than I do. Don’t talk that way about my kid.'”
Me: “Then why didn’t you switch me to another school?”
Mom: “Because we didn’t have the money to do that.”
And then we got home, and the conversation ended there.
It was the best conversation about autism I’ve ever had with my mom. It felt good for her to validate that it is something real, that it isn’t something I just made up for myself because I thought it would make a good story.
I sort of feel sad for the little kid who was me because I never did get any of the help autistic kids can get today. I’m not talking about “act like you’re normal” help, but things like occupational therapy and just help processing the fact that I was different, and advocating for myself.
A book that reminds me of growing up undiagnosed is Stellaluna. It is a children’s book about a baby bat who falls out of her mother’s grip while flying and falls down into a nest full of baby birds. The mother bird starts to raise the bat as one of her own, but she scolds Stellaluna for doing what she considers to be strange and even naughty things, such as hanging upside down. She says that if Stellaluna wants to stay in the family, she needs to act like the other birds and stop teaching the other birds how to do bad things. It isn’t until she finds her mother that she realizes she doesn’t do these things because she’s a bad bird — she does them because she’s a bat!
If I had grown up knowing I was not a bird at all, but a bat… if I had gotten to meet other bats and been taught how to use my bat abilities to their best… would my life have been different? I guess I will never know!
Follow this journey on Diary of an Alien.
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