My son was eighteen months old when I first had an inkling that he might be autistic. Walker was always really different from his older brother; I told my mother that on the day he was born. I didn’t recognize those differences as autism until a little later. Because his presentation of autism is a little bit atypical, it took me a long time to convince all the necessary experts to evaluate him, but finally, just before his third birthday, we got the diagnosis I knew all along.
Our boy is autistic. Turns out, I knew my baby better than anyone. I was proud of myself for fighting for him, but when we finally had the official diagnosis in hand, I went through a huge emotional upheaval.
But not for the reasons you might think.
I wasn’t mourning the child I thought or wished I had. Walker, exactly how he is, is the child I have always had, and the only version of him that I would ever want.
I wasn’t trying to process what his future might be like. He will determine his own path, just like any neurotypical kid does.
I was just really overwhelmed by my own ignorance. I literally had no idea what he would need, and I certainly didn’t know if I was a good enough mom to adequately raise a neurodivergent child.
I felt like he deserved the kind of mom who would keep all of his appointments and information organized with binders and calendars. He should have a mom whose house was never messy, and who curated a dedicated room full of Montessori toys and sensory bins. Walker deserved organic foods and equine therapy and anything else a very young autistic child could want.
Instead, my boy was getting me: a hot mess with a house full of plastic dinosaurs and frozen chicken nuggets. He was getting a mom who has been known to completely forget about appointments until the doctor’s office calls to remind us the night before. He got stuck with the mom who once sent her oldest child to preschool in a giraffe costume because she forgot it was Brown Day at preschool and it was the only brown clothing we owned.
I couldn’t offer him the best of everything. All I could offer him is a lot of love and a promise to try really hard to learn all I can and get him what he needs. Would it be enough?
To this day, I have tried really hard to be careful about where I get my information about autism. I had no idea when my son was diagnosed how much incredible information autistic adults would be willing to share with me. The fact that they take on that heavy emotional labor to advocate for autistic children is still one of the most mind-blowing things I’ve discovered since I started learning about autism. I get the vast majority of my information about Walker from autistic grownups. If I had known they would be there to share with me, I probably wouldn’t have worried at all.
Recently, a fan asked Amy Schumer on Instagram how she would “cope” if her son was diagnosed with autism, like her husband, Chris Fischer. Her response really resonated with me. “How I cope? I don’t see being on the spectrum as a negative thing. My husband is my favorite person I’ve ever met. He’s kind, hilarious, interesting and talented and I admire him. Am I supposed to hope my son isn’t like that?”
YES. Thank you, Amy. The spectrum is literally overflowing with amazing, creative, talented individuals who color our world in ways neurotypical brains just wouldn’t have imagined. Some of the greatest minds in history were likely autistic. If society could progress past the idea that different is less, we would be able to accommodate autistic people properly and see how incredible their contributions to history can be when we don’t try to shove them into a neurotypical box for our comfort.
When I mention that Walker is autistic, I am often met with pity.
PITY. Can you imagine? “Oh, I’m sorry. He seems so normal to me!”
Oh. My. God. YUCK. Rude.
First of all, he is normal. WTF does normal even mean? He is exactly who he is meant to be. Autistic is normal.
Secondly, that’s not a compliment. Walker is under no obligation to not “seem autistic.”
And lastly, save your pity! I don’t deserve one second of anyone’s condolences. I have the privilege of raising the funniest, most adorable, brilliant, quirky boy alive. He has the right to live in a home where he is celebrated for everything he is, and where he is not forced to do hard things every single moment of his life to try to blend in with a society designed for neurotypical people.
I do have to “cope” with his little boy antics. I’ve definitely felt like I could use some tips on how to handle the amount of mud, grass, bugs, and dandelions he drags into the house. If anyone can direct me to a resource to provide both of my sons with a dose of healthy fear so they don’t continually do things that risk life and limb and turn my hair gray, I’d take that hook up.
But I have never needed any help “coping” with Walker’s diagnosis.
I thought I would have to provide so many things to help Walker be successful, but as it turns out, what he needs the most is time and space and permission to do things his own way. I’ve got plenty of that!
What we get to do together is a joy. He gets to blossom on his own timeline, and I get to watch it all unfold. He gets to blow my mind with his intelligence and humor, and I get to be one of the few people alive who sees all the facets of his personality.
I know that ASD can present in each individual differently. The spectrum is vast, and my son is not representative of every autistic person. Some parents with different experiences might feel some grief or a sense of loss when they find out their child is autistic. I don’t think that makes them bad parents. I think it probably means they are getting a lot of information from organizations that paint autism as scary and hopeless. Maybe, like me, they just don’t know much about autism and what they know is sensationalized and inaccurate. Maybe they see their child struggling and they’re worried life will always be hard for them. I know it’s complicated.
But for me, there was no need to cope with anything but my own incompetence. Once I realized that I was more than capable of being the mom my boy needs, I was able to start truly learning. For me, there was nothing to try to cope with; there was only the privilege of raising a child who has as much to teach me as I could ever hope to teach him.
The author has chosen to use identity-first language to describe her son as instructed by autistic adults. To learn more, please check out this enlightening article from the Autistic Self-Advocacy Network.