This article was first published April 4, 2024 in Ezra’s World.

April is Autism Awareness/Acceptance month. For the past seven years, we’ve spent each month wearing Autism tees, posting on Facebook, participating in 5k walks, and so much more. This year, we’re pretty silent. See, we no longer have a cute four-year-old who walks around the stores “singing” the Star Wars theme song where everyone can hear. Gone are the days when we can pick up an overwhelmed child of five and get them to a safe place when they’re having a public meltdown. No one cares much if a parent has to take a six-year-old out of church service or other structured settings, because it’s “too much.” Those days are gone.

We now have an 11-year-old pre-teen with hormones and emotions coming out everywhere, as he’s discovering that this world was not made for people who have a brain that works like his. What was cute and fun to “Embrace as Different” as a young child will get you bullied and few friends in fifth grade. The differences we learned to celebrate and love are now stifled, and when they can’t be, they lead to bigger problems in structured settings. It’s no longer cute how he runs back and forth, imagining worlds you can’t even dream of. He’s older now. He should learn to sit and be still. This precious child, who has a huge fear of upsetting someone, disappointing them, or inconveniencing them, is now being told that the things that he had learned to appreciate about himself are a problem. He must shut it down at structured times. Hold back. Those things are not ok. It’s no longer cute. So, in order to please and not disappoint, he hides what he is told is not acceptable.

Like any child who has worked hard (especially those who have had years of intensive therapies), he masks. He has learned that being different only causes problems. People will look at a child with Autism and smile, but they will look at a teen or adult with Autism and grimace. He takes every ounce of his energy to go to structured settings and “act” like a “normal” kid. He then comes home each day exhausted, because he is no longer a young child with Autism. He’s entering the “real world” where life isn’t fair, and Autism isn’t cute.

I can tell you about the hours upon hours we’ve spent in the past seven months navigating tears, anxiety beyond belief, and violent meltdowns. Because after a day of masking and holding who you are in, all day long, it all comes out when you get home to a safe place. We have seen a lot of regression in the past several months. We’ve cried, fought, and wanted to throw in the towel. There are times when we have to physically dress our child, who is now well over 100 lbs, and growing so much. There are times he can’t speak because he’s too overwhelmed and his brain has shut down. It’s confusing for people to hear about this, because if I had a dime for every time someone said, “He doesn’t look like he has Autism.” I’d be on a beach somewhere right now. People with Autism have HAD to learn to adapt to a world not made for them. The option of not doing so is much worse, because this world has a LONG way to go in truly accepting people with Autism. Especially when it’s no longer cute.