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Things I Hate in a World Not Designed for My Son With Autism

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My son is a beautiful, sweet, amazing little guy who is without question one of the finest things I could ever give to the world. He loves totally, unconditionally, and views the world with a sense of wonder that is beautiful to behold. He just happens to be autistic.  That’s part of who he is. The way he experiences the world informs the person he is and the person he will become. A person I love more than life itself, and who I am so very proud to call my own. He would not be that same person if he wasn’t autistic.

Despite the struggles we face with our son due to his disability, I would not say I hate autism.

What I hate, is how much harder the world makes it for him.

I hate the ignorance.

The idea that my son is somehow lacking because of his condition. That anything is better than having to deal with a child who is autistic, including the serious health risks that come with non-vaccination or “home treatments” that actually include the ingestion of household chemicals that people know damn well are poisonous. All in an effort to “cure” a child who isn’t sick.

I hate the judgment.

The way people stare at my boy when he does get overwhelmed and lashes out, judging him for one bad moment, jumping to the conclusion that he’s just having a tantrum. That my wife and I just don’t know how to raise a well-behaved child. Or worse, that because he is autistic, he poses some kind of threat to their own children, either physically or by somehow “spreading the disease” in a way that will slow their own child’s development.

I hate the restriction to services.

Trying to get access to services that will assist my child and help him develop the skills he needs to live as full and independent a life as possible frustrates the hell out of me. It is a never-ending bureaucratic merry-go-round that I am thoroughly convinced serves no purpose other than to deter applicants to the point that they eventually just give up. Any parent trying to get their child Medicaid can tell you the stories.

Those are the things I hate. Not autism.

In the end, I want the same thing for my boy that every parent wants for theirs: for him to have every opportunity to live his best life. The only difference is that my child is trying to do that in a world that wasn’t designed for him. When he’s having a hard day, and I think about all that, I shake. Not because of how hard it is on me or his mother, but because of how hard it is on him.

He is what’s most important. Understanding what being autistic means to him and offering unconditional love and support is how his mother and I can help him best.

No matter what life may choose to throw at him,  we have a new opportunity every day to show him that despite what the world might be trying to tell him, he is worthwhile, he is loved, and he is just as good as anyone else.

Autism isn’t the enemy. How the world views it is.

Getty image by Paul Bradbury

Originally published: March 20, 2018
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