This blog post is by Synapse Team member, Jana B. April is Autism Awareness and Acceptance Month. Learn more on the Autism Society's website.
To the parent who just realized why their kid is so different, I want to say, "I've been there." Many parents have been there. We had this child that was supposedly just like the other kids, and then one day we realized they weren't. For me, it was when I was watching my oldest son with a preschool class. All the other kids were playing freeze dance, and he was on the other side of the room, running in circles flapping his arms. That's when I knew his not talking went deeper than his not having words. I think that was the day I was sure it was the dreaded "autism." That day was nearly 7 years ago now. I'd like to share some things I've learned along the way.
I had to let go of the kid I thought I had. I did not expect my son to be the person he is. Some of that has to do with his diagnosis. Some of that has to do with the fact that he much prefers books full of facts over the fairy tales I love. My fantasy child was much easier to live with but so much more boring than the kid I actually have. Some things still hurt if I let myself dwell on them too much, like how he doesn’t want any friend’s birthday parties and how he’s not signing up for science camp. But when I focus on what I’m missing out on, I miss out on the kid in front of me. The one who feels every moment so deeply. The one who dances every single time he hears music, no matter what it is. I like my real kid better than anyone I could have dreamed up. I can’t bear the thought of missing out on him.
The rest of the world may never understand. And THAT'S OKAY. When I got pregnant at the same time as my cousins and college roommates, I thought we’d raise our kids together and be community and family for each other. We didn’t and we’re not. Some days it feels like our experiences aren’t even on the same planet. This is the part that was hardest for me. Many people aren’t prepared to go that far outside their sphere of experience, and there’s nothing I can do to change that. Doctors, teachers, neighbors, extended family, many of them will think it's misbehavior or permissiveness. I don't worry about what they're thinking. We just live our lives and do our things. It just rolls off my back most of the time and I'm not sure my kids ever cared.
Some people will understand. More than you might think. I thought the only people who would ever understand would be myself and my co-parent. We have a wonderful community with some of my children’s teachers and therapists, and I’m honored to call them my friends. There’s this whole group of people I never would have met without this commonality, and I’m so relieved I did meet them. We have friends, neighbors, and teachers who enjoy our family, and we enjoy them. My child free friends have stood by me and my children and have been there for every detour in our path. There are so many good people who want to include us and to be included. It doesn’t exactly make up for point number two, but I’m glad for these relationships all the same.
Early in my autism journey I decided I’d never take advice from anyone about my kids unless that person was also autistic. I read earlier on that however I treat autistic people is how I’m training the world to treat my child. I now know that while asking autistics is a wonderful resource, they don’t know my child and my situation. Much of the advice that’s good in general is not necessarily good for my family (eg visual schedules don’t work for my child.) No one has the magic bullet. There’s lots of resources, but only a few will be the right fit. And I guessed wrong about which ones our family needed a lot. I still do. And then when things aren’t working, I try something else. We’ve tried so many “something else’s” over the years. It helps me be less afraid of making mistakes now that I know almost everything is fixable. Therapist a bad fit? Get a new one. That routine causing too much stress? Adjust it. It often takes time and effort to fix the systems I build for my family, but it can absolutely be done. And even if the routine was perfect when he was 5, by the time he was 5 and a half we needed to adjust anyway.
Our lives are happy. Did my kid eventually hit all his milestones? No, as a matter of fact, he didn't. And we're happy. Does he play like other kids? No, he doesn't. Do we play every day? You bet we do. We have our challenges, but overall, we spend our time just enjoying life. We dance, we laugh, we play tag, and we snuggle with hot chocolate on cold nights (especially leading up to Christmas). We even argue with each other sometimes. All three of my children are non-speaking autistics, and I have a different relationship with each of them because they are wildly different people with completely different interests. They each bring me joy in a way all their own. When parents of typical kids describe the bond between themselves and their child/children, I don’t see any difference between them and the relationships I develop with my own kids.
My child goes through developmental changes just like other kids. Because autism is a developmental disability, I wasn’t sure my child would ever emotionally mature beyond the day of his diagnosis. He definitely has. As he’s gotten older his desire for autonomy has increased just like any other child. He rolls his eyes at my perceived ignorance just like any other child. Growing up may look different for my son, but he is growing up and changing. It’s interesting to see how my 9-year-old communicates. He gives complex and nuanced answers to yes/no questions even without words, using a combination of sign, gestures, facial expression, and body language. All my children go through stages of wanting autonomy and wanting closeness. Sibling bonds grow and change. Their tastes in music and tv- well we never stop watching nursery rhymes, but we have added Star Trek: Prodigy and Avatar: The Last Airbender. Growing up looks different for my kids, but we’re on this journey together. So far, it’s a voyage, and I have the coolest crewmates imaginable.
I’m going to be honest; our autism journey is one of the biggest things that has ever happened in my life. It changed everything, but I love him and I love our life. I have seasons of joy, and I still have moments of grief here and there. I try not to dwell on the parts that make me sad. When he was first diagnosed, I was sobbing to a loved one who asked me, “What’s wrong with being autistic anyway?” I wailed, “I don’t want him to suffer!” From the other room we could hear his peals of laughter. My friend raised his eyebrow at me and sardonically responded, “Are you sure he’s suffering?” I had to laugh. My experience of my son’s autism is different than his experience of his autism, and I try very hard to keep them separate. Our lives are just as full as anyone else’s, and I don’t want to minimize any part of our abundant lives.
This list is for the parent who just associated the word "Autism" with their child. It is terrifying to hear a lifelong diagnosis as a response to struggles. This list is designed to both comfort and help with the practicalities of life
