I had a conversation last night with a woman I met on Reddit in a group for special needs parents. Her child was recently diagnosed with autism, and she was freaking out. I felt for her; I remember how overwhelmed I felt when I first realized Sawyer was probably on the spectrum. I reached out to try to comfort her and let her know that things will be ok and her daughter will be just fine as long as she supports her. I talked to her about ABA therapy and ways to help her communicate, since her daughter is nonverbal. She asked if therapy would cure her daughter and I had to explain to her that no, she will never be cured, but that therapy may help her learn to adapt to world around her and she may be able to function better than she is now.
So many people think autism is a disease- something that can be treated and their child will eventually be cured. The truth is there is no cure for autism. Autism is not a disease; it is a neurological disorder, which means the brain processes things differently than someone with a “normal” brain. There are lots of ways to treat the symptoms of autism, but because everyone with autism presents differently, the treatment for one may be very different than the treatment for another. Treating the signs and symptoms of autism doesn’t mean that eventually the child will be cured; it means that they will learn ways to cope with daily challenges they may face and adapt to a world that is harsh and difficult for them.
I have been asked several times if I wish Sawyer could be cured. My answer is and has always been no. For us, autism makes Sawyer who he is. The way he walks around on his tiptoes, or the way he runs back and forth through the house, or the way he blurts out such honest and insightful (and often funny) thoughts make him who he is. I would never want to change him because then he wouldn’t be the Sawyer we know and love. I used to love to watch him line up his cars in “parking lots”, and I am always so fascinated by how he can memorize even the smallest details about things he loves, such as Cars, Roblox, or Numberblocks. I used to love when he would get excited as a baby and flap his little hands, or giggle hysterically at the exact same part of a TV show or movie.
Did I mourn parts of the childhood I thought he would have? Absolutely; most autism parents experience a period of grief after a diagnosis (and even throughout their child’s life) as they realize that their child may never get to do some of the things we dreamed about for them. I always dreamed of watching Sawyer play tee ball, or football when he was in high school. I prayed for a buddy who would fall in love with dinosaurs and eventually share my love of the “Jurassic Park” franchise, but Sawyer wants no part of any of that. We tried soccer and it was too overwhelming for him, and he’s never shown interest in wanting to try any other sports. I know my ex husband wanted to be able to share his love of “Star Wars” and superheroes with Sawyer, but Sawyer isn’t interested in any of that either. It’s sad and disappointing for me, but eventually you get over it and learn to take interest in the things they love- whether it’s computer games, collecting rocks, or an obsession with trains. I ask Sawyer questions about his favorite Roblox games, and he explains in great detail about characters, different servers, etc. I hate math, but he absolutely loves numbers, and one of his favorite “TV” shows is a YouTube show called Numberblocks, so I get to hear him spouting random math problems and talking about his favorite numbers often. Even though this is not the childhood I thought Sawyer would have, it has turned out to be so much fun because I get to experience childhood in a different way; Sawyer’s way of thinking and way of playing is so much different than my girls’.
If your child is diagnosed with autism, the thing to remember is that your child is not broken or sick; their brain simply works differently than a neurotypical brain. As a parent, it’s not our job to “fix” or change who are children are. It’s our job to love them for who they are and help them grow and learn as best as they can. And not only that, but we have to educate ourselves on autism, so that we can understand how to help our child when they’re struggling.
Parenting a child on the spectrum is not easy, even for those whose children can function more “normally” than others on the autism spectrum. A lot of people tell me they would never know Sawyer was autistic if I hadn’t told them, but that doesn’t mean we don’t have our challenges. We have learned he can’t handle being outside for long periods of time- the bright sunshine hurts his eyes even with sunglasses and he gets very upset. We have learned that noise cancelling headphones are a lifesaver for things like basketball games or the Fourth of July, because loud noises are scary for him and too many conversations at once can overwhelm him. Sawyer has an irritational fear of dogs, so anytime he hears or sees a dog, he panics and we have to get as far away as we can. When Sawyer was younger, he didn’t do well with going into places like the grocery store or WalMart, because all the sensory stimulation was just too much for him and he would end up melting down if we stayed in the store for too long. Over time he has learned to focus on one thing at a time to help him deal with all the sensory stimulation, and often times if you see him on his tablet in a public place, it’s to help him focus and stay calm by watching or doing something that relaxes him. Sometimes his stimming can be a little annoying for those around him, and I have asked him to stop clearing his throat or whispering to himself when I’m trying to watch TV or work from home. Most of the time he doesn’t even realize he’s doing it, but it can be disruptive to those around him. We have had to leave events early many times because sometimes it’s just too much for him, and it can be frustrating but I know he can’t help it- it’s just the way his brain processes the world around him.
Because Sawyer’s brain functions differently than mine, I will never fully be able to understand how he experiences the world. I know that his awareness of his surroundings is much more in-tune than mine, and because of this he experiences a lot of sensory stimulation that can be overwhelming, frustrating, and even scary. To change how Sawyer experiences the world would be changing how his brain works, and that would change who he is as a person. Sawyer is a beautiful little boy with a loving personality, frank and funny observations, and a natural curiosity and love of learning. He wants everyone he meets to be happy, friendly, and have fun. Why would I ever want to change that?