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Beyond Autism Awareness Month: Here’s What Life Is Like for My Autistic Son

Imagine a very loud party where you don't speak the language and your clothes are itchy.

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Obviously, the best person to explain what it’s like to have autism spectrum disorder is someone who actually has it, but my boy isn’t really able to…yet. Until he is, I’ll give it my best shot in the interest of promoting awareness and understanding. What’s it like making your way through the world as someone who’s autistic? Let me give it a try.

Imagine you’re on vacation with a friend in a foreign land. Your friend knows the local customs and speaks the language, but you don’t. She’s invited to a party that night, and wants you to come along, thinking you’ll enjoy the band playing there. You get to the party, and you run into a couple problems. First, the new outfit you bought is itchy and uncomfortable (you wore it straight off the rack; wool was a bad choice). When you get to the party, no one else speaks your language. Your friend has tried to give you a few lessons, but you just haven’t been able to pick it up. So, you can’t really interact with anyone. It doesn’t help that the band’s playing at a volume that makes your ears ring, or that they’re using spotlights that keep blinding you. The place is packed, and you start to get anxious because all you really want to do is get out of there and get some air and a little peace.

This story was submitted by a Fatherly reader. Opinions expressed in the story do not reflect the opinions of Fatherly as a publication. The fact that we’re printing the story does, however, reflect a belief that it is an interesting and worthwhile read.

You’ve had enough, you can’t handle it anymore, and you start to panic. You try to force your way through the crowd, with people staring at you and yelling in that language you can’t speak. They start looking at your friend, basically wondering what she was thinking to bring you along, asking her what your problem is. The majority of the crowd doesn’t know you can’t speak the language, or that you don’t know the social mores of the area. To them, you’re just an ill-tempered, ill-mannered party guest who needs to go.

Your friend makes her apologies so she can get you out of there for your sake, not theirs. She was worried this might happen since she knew your situation, but didn’t want to leave you behind. You feel badly for what happened. It’s not that you didn’t want to get to know some of her friends and have a good time — it was just too hard with all those people and all that sound and light overloading your senses.

Now imagine that the foreign land is actually home, the language you can’t understand is English, and the one-night event is every minute of every day. This is what life is like for my boy.

Autism can make you feel like a stranger in your own land. The magnitude and impact of the condition on day-to-day life differs from person to person. Some are so high-functioning that you might not recognize them as being on the spectrum. That doesn’t change the fact that they are. Others may never speak at all, much less live independently. Many have debilitating and chronic medical issues.

Men and women. Boys and girls. It’s part of them — that doesn’t mean it defines them. It’s something they can often learn to live, even thrive, with. The good news is that, thanks to medical advancements, the condition is being recognized earlier, and early intervention can work wonders. There’s no cure, and many autists would be insulted if you implied that they would need or even want one: Autism has given them a unique view of life and the world. It’s a huge part of who they are.

Although it can be extremely challenging, being on the spectrum doesn’t mean being cursed to lead an unfulfilling life. Those with autism see and appreciate things for what they are, a lot of the time doing a better job of it than their peers who are considered “typical.” They feel all the same things anyone does, and have just as much potential. They just need a bit more help, patience, and love to live up to it.

Autism Awareness Month is great — don’t get me wrong — but it’s only a blip on an otherwise full calendar. Just remember: after a day of  doing a walk, or watching a documentary, autistic folks will still be facing the same challenges. You don’t outgrow autism. The next day and every day following they’ll still be striving to live up to their potential and meet their dreams, just like my boy. Support them and the people who love them not just one day out of the year, but every day.

An overgrown man-child and connoisseur of geek culture, Jeremy Michael Wilson is striving to raise his two sons to become more responsible, self-actualized men than himself.