Autism Parents Go to War with Florida City

"Even if the whole world is telling you to move, it is your duty to plant yourself like a tree, look them in the eye, and say 'No, you move'." - Sharon Carter, Patron Saint of Autism Parents
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A couple with a 25-year-old autistic son noticed that their child had a particular fascination with Vincent van Gogh's "Starry Night". When he was agitated, he would open up a book with the painting and look at it to calm down. As the parent of an autistic child myself, I can tell you it's almost impossible to convey how vital it is to have something like that available to help regulate your child when they find themselves losing control.

I say "almost" because the lengths this family went to for their autistic son should give you some idea how important it is.

The couple, Nancy Nemhauser and Lubomir Jastrzebski, first had the five foot high wall around their front yard painted as an extended mural of "Starry Night". But when a pissy code enforcement officer complained that the wall had to match the house, they had a choice: Comply and paint over the mural which would have devastated their son or...do something else.

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Yeah, they painted their entire house to match the wall. Is that extreme? For most people, probably. For autism parents? No.

The city of Mount Dora put up a huge stink. The complaint was, seriously, the house "attracts the attention of the public". Translation: We don't do things like that around here so change it. The parents took the city to court and eventually won, forcing the mayor to deliver a public apology.

On the one hand, this is a story about the little guy fighting unnecessary government regulation and winning. But the deeper story is how society has to be forced, kicking and screaming, to make space for autism.

Had the pissy code enforcement officer understood, truly understood, the impact painting over the wall would have had on the son, he would have walked on by and never said a word. But he didn't and when the couple almost certainly explained it to him, he didn't care. When the city blew a hissy fit over the house, they didn't consider for one second how damaging it would be to the son to paint it all over. They had rules, dammit!

It's this indifference that we autism parents have to fight on a daily basis. The looks people give us when our children don't "behave" they way they think they should. The comments about how our kids who just need a good slap to get them "under control". When our schools tell us that our children can't be helped because it's too difficult or expensive.

Society has yet to grapple with the concept that autism is not something that we can "fix". Or that children "grow out of" it. These are not people we can force to fit into our existing social framework. It simply cannot be done anymore than people in wheelchairs can magically climb stairs. We must be flexible because they cannot be. That is the curse of autism. We must accommodate those who can rarely even meet us halfway. It's not because they don't want to but because they are manifestly incapable of it.

Sometimes that will take the form of creating simple, possibly even unnecessary, jobs so that autistic adults can be a productive part of society. Maybe it will mean building entire communities centered around keeping autistic adults safe while they live the best life they can. Maybe it will mean a city will shut the f*ck up when a family paints their house in the style of an artistic masterpiece for their autistic son.

Whatever form it takes, we as a society will have to learn how necessary it is. As of right now, our ignorance is shameful and we are running out of time. Millions of autistic children will soon become autistic adults, joining the already existing multitude, and the rate is increasing. If we don't make a space for them now, what will we do? Tell their parents to make them disappear like the "Starry Night" mural?

Have you met an autism parent? You'd have a better chance getting between a bear and its cub. Good luck with that.

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