I was an autism mom before I was autistic.
I mean, obviously that can’t actually be true, because I’ve been autistic my whole life, but I came into the autism community as a parent years before I knew I was autistic. My introduction to autism was as a mom to my young son Jack back when he was turning three.
It didn’t take me long to suspect that I was autistic as well, but it did take me a long time to claim autism as an identity.
At first, this was just because I was spending all my time taking care of Jack and his brothers. I was learning how to navigate therapies and decide what was important. I was learning how to advocate for my son to get him the services he needed in the school system. I was also dipping my toes into the online autism world, reading blogs of parents and autistic adults and seeing myself in both places.
Jack is nine now and we have finally managed to get him in a place where he is happy, he is learning, and he has pride in himself. With his less all-consuming needs, I made the decision that I wouldn’t be able to reach that same ease in my person until I had a definitive answer about myself. Several months later I had a diagnosis of Asperger’s and a feeling of, huh, now what?
I’m still learning what my diagnosis means to me—and I am constantly astounded by how much it really matters. I have a whole new lens through which I look at my behaviors. I understand that there are reasons why certain things are difficult for me and know now how to build in supports and extra time for myself. I have learned to forgive myself for things that are just too much.
I no longer just assume that I should be able to handle everything because that is what people are supposed to do. I haven’t stopped trying to do those things that are hard for me, but I am learning to find ways to make them easier.
My autism diagnosis has changed the way I look at so many things in my life. It is changing the way I view myself, my marriage, my friendships, and my parenting. Learning how to be a proud, out autistic person is teaching me how to help my son know that he can be the same.
I spend my life teaching my kids. I teach them about practical things like the evidently non-intuitive information that you don’t have to squeeze all of the toothpaste out of the tube to brush your teeth. I teach them about more complicated things like finding a balance of respect when you have people with conflicting sensory needs living in the same house. I teach them about the most important things like loving and being proud of exactly who you are every day.
But it turns out that my kids are teaching me too. Watching Jack learn to navigate the world for the past nine years has taught me to adopt some coping strategies that I didn’t have before.
Just the other night my kids and I went to my oldest son’s school to watch him perform in a band concert. We got there early and Jack was getting antsy. He was fidgeting in his chair and his stress was obviously escalating. At the same time, I was starting to lose my own ability to cope with the sound of the man chewing gum behind me.
Always before, I would have muscled through. I would have leaned away from the sound. I might have tried to discreetly put my fingers in my ears, because you’re not supposed to freak out when someone chews gum near you. You’re not supposed to mind what other people are quietly doing in their own space. Hell, you’re probably not even supposed to be able to hear it in the first place.
I decided to take Jack for a walk so he could spin through the halls for a few minutes before the concert started, but I think I was as relieved to escape as he was. Then it occurred to me: I am allowed to escape too. I am allowed to remove myself from these situations and find a way to regulate myself before I return.
Just because it is expected that I should be able to handle things in a certain way doesn’t mean I have to. Just as Jack is allowed to take a sensory break, I can too.
It seems so simple, but these are things I have spent most of my life not doing because I always thought I am supposed to be able to handle these things. It is a revelation to know that it is okay to not be able to.
Even though I have been autistic for my entire life, I have only been consciously autistic for a few months. Realizations such as the one I had the other night keep coming at me. Moving from unconsciously compensating and trying to fit in has turned into my actively seeking ways to take care of my needs and consciously deciding when I think it is important for me to fit in and when it is okay for me to not worry about it at all.
Jack has taught me a lot of things—all three of my kids have—but the lessons he is teaching me about being myself and learning how to live in a world that is not built for me have been invaluable.
Of all the gifts that my children have given me—and there have been many—one of the best is the gift of self-knowledge about my autism that Jack has given to me. I am so grateful to be able to share this journey with him and I am so happy that we can learn these lessons together.
About the Author, Jean Winegardner.