I'm Autistic—Here's What I Needed From My Parents as a Child

Hey parents, it’s your child—your autistic child. The child who you had big expectations for. The child you fear will have a hard time learning. The child you fear will get picked on by his classmates. The child you fear will never hold a job on their own. The child you may fear doesn’t have a plausible future in sight.

You may be feeling all of the emotions a parent can have. It’s common, especially since, according to John Elder Robison, an autistic author who received a diagnosis at the age of 40, 1 in 54 children are diagnosed as on the spectrum. 

My parents had those same fears for me and my brother growing up. From a young age, I was made to feel like my autism was a hindrance to others. I was placed into speech and behavioral therapy to “fix my autistic traits” and required special classes up to the first grade. In kindergarten, I would spend half of the day in special education, and the other half in a “regular” classroom since my needs were different compared to my classmates.

I was taught what to say, what to do, and how to survive in a world that wasn’t made for kids like me. My parents did all they could to make sure I had the best opportunities but at the expense of me learning how to embrace being on the spectrum. I do not blame my parents for this. They did what they were told by medical professionals to do. As I got older, I began addressing my needs and it’s been a journey doing that with my family. Here are some pieces of wisdom I hope you find useful in navigating through your own journey as parents of autistic children.  

Listen. 

This one seems like a no-brainer, but let me elaborate. When I was growing up, a lot of the information about autism from organizations, like Autism Speaks, was given as lived experiences primarily from parents of autistic children. In theory, there’s nothing wrong with it. Parents sharing their perspectives is important when discussing the well-being of autistic kids.

But, it isn’t the only perspective worth noting. As parents, I would implore you to lend a compassionate ear. 

Let us make our own demands. 

As an autistic person, I don’t believe that all autistic people are incapable of making good choices and bad choices. I was raised to understand right from wrong and, given how my brain understands that concept, it would be inappropriate for me to use being autistic as an excuse for any bad decisions I make, whether big or small.

When I see parents speak on behalf of their autistic children, it’s often in cases where the child is severely autistic. This is very one-sided. This doesn’t allow many autistic people to advocate for what we want and need. Most parents of autistic children who feel the need to advocate for their children mean well—and many of them have to—but I do think a lot of the conversation should be shifted to give us a chance to advocate for ourselves.

No need to micromanage.

As an autistic person who hates being pandered to, I can’t stress this piece of advice enough. When people learn I'm autistic, they often feel the need to micromanage everything I do. This stems from the idea that autistic people are “emotionally immature” compared to allistic people. And this leads to people, including parents, infantilizing autistic people.

Despite good-natured intentions, it can be flat-out rude. Parents have a fear that their autistic child won’t be able to live on their own, but I would argue that some parents don’t give their children a chance to prove them wrong. So, please, let them prove you wrong.

Let us be selfish.

A type of therapy that many autistic children grow accustomed to (as a result of their doctors and parents) is ABA therapy. ABA stands for applied behavioral analysis. The goal of ABA therapy is to teach autistic children how to mask their autistic traits in order to blend into allistic environments. The biggest component is the concept of rewards and punishments being implemented. If the child does something good, they’re rewarded. If not, they are punished. I don’t blame my parents for putting me there. They did what they felt was best for me with the information they had at that time. 

As an adult, I’m slowly deconstructing everything ABA therapy taught me. I’m giving myself permission to do things I felt like I had to suppress. Stimming is something I’ve learned that helps regulate my emotional needs. I have tendencies to crack my fingers or stretch out my legs as a way to self-regulate myself. I’ll let you in on a little secret: everyone stims, even allistic people. We do it to regulate our senses. I had to ask myself if non-autistic people do it, why can’t I? I can’t even begin to put into words how freeing it’s been. 

We appreciate you.

Without parents, so many autistic children wouldn’t be able to get to where we are today. Many parents blame themselves for their shortcomings, whether their kids are on the spectrum or not. I would implore you to realize that you will make mistakes. It’s inevitable.

But, you can take those mistakes and build upon them. We know you want us to succeed and, believe me, we want to succeed as well. The only thing we ask of you is that you remain focused on learning and we’ll do the same. 

The type of work parents of autistic children need to do is monumental. Raising autistic children is not for the faint of heart, and I applaud parents who push forward and rise to the occasion. You are the backbone for us.