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Why Is There a Divide in the Autism Community?

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Looking back on my son’s first few years, nothing seemed “off.” I’d only really seen made-for-TV movies about autism, and let’s face it, I think they’re extremely poor representations of what autism is.

Autism wasn’t something that was talked about openly and honestly 10 years ago. I think a lot of parents are naïve and living under false assumptions. If a child talks by 2 or if there’s no regression around the same time, then this child you imagined in your mind is going to be a reality.

It turns out I was already raising an autistic child and didn’t have a clue. My daughter would be diagnosed with Asperger’s a few months shy of her 10th birthday. When my son started pre-K, all of the sudden I was that mom. The one the teacher always needed to talk to and the one who was getting letters home from the school social worker.

Seeing him around his peers, the differences were magnified. There was no denying he was “different.” So I did what I believe most parents do when they get a diagnosis of autism: I Googled it. Yes, I now know I was asking for trouble and misinformation.

Alarm bells went off in my head, and it felt like the world was crashing in around me. It’s a sensation of panic that’s hard to describe. I read every book and article I could get my hands on. I also thought there was a lot of scary information out there, not to mention some dangerous “treatments” that promise a “cure” for your “broken” child.

A year passed by, and the world didn’t come to an end. My child is still the same perfect little boy he was a year ago.

I started to relax into our new routine of therapy appointments and meetings at school. I got involved in the autism community, and once again, I was naïve to the fact that there is more than one way of thinking within this community.

You might stumble across a new page or group to like. Then it happens — you get caught in the crossfire. You’re quickly educated on function labels being offensive and how to properly address or speak about a person on the spectrum or autistic individual. Is it a disability? Is it a disorder? Do we need a cure? Is there anything to cure?

Everything you thought you knew has just been thrown out the window. You’ve just entered the great divide. On one side, you often have parents and professionals, and on the other, you often have autistic adults. Each side is strong in their convictions.

I would never want to dismiss what an autistic adult has to say. After all, my kids will grow up to be autistic adults. But there’s a growing friction within the ASD community. The words are flying back and forth on both sides.

You’re not like my child. My child isn’t as high functioning as you.

You’re neurotypical, you would never understand.

My child isn’t defined by his/her autism.

I’m autistic, not a person with autism.

When you say you hate autism, you’re saying you hate your child!

Applied behavior analysis is cruel.

Applied behavior analysis saved my child.

Awareness or acceptance.

Why can’t there be both? 

My head is once again spinning. Why is there a divide? Both sides serve the same interests: the care of autistic individuals. Both groups seek respect, jobs, education, accommodations and understanding.

It seems if both sides stopped pointing fingers at each other, we might actually get somewhere with the things we all want to accomplish.

Getty image by Vera Livchak

Originally published: March 24, 2016
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