Invisible Disabilities and the Public

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How do you let a stranger know that your child with autism isn't badly behaved—he has a disability?

My three kids and I went to a children's library the other day. Because it was a cold day and school was still out of session, the small one-room library was packed with kids and their parents. This particular library is lovely and, in addition to books, features toys and crafts, including a small train table.

Six-year-old Jack was having a little bit of an off day and his behavior was subsequently slightly sub-par. He didn't do anything really bad, but he and a three year old had a problem sharing and then at one point when my back was turned, Jack ran a train into a small toddler's hand. I didn't see it happen, but the child didn't look fazed at all mere seconds after it happened, nor did he cry.

But the mother, who had seen Jack and the other child struggle with sharing, sounded upset as she reprimanded Jack, "He's a baby. Don't do that to a baby."

She wasn't necessarily out of line to say that, and I asked Jack to apologize and removed him from the table. However, it was a little harsh and experience has taught me that often other parents will see Jack acting in a way that they don't expect a child of his size and obvious age to act and make a decision that he is badly behaved. They will then speak more sharply to him than they would to a younger child exhibiting the same behavior.

See, Jack's autism is invisible unless you really, really look—and you know what to look for. Having an invisible developmental disability is really difficult. Observers can't know that his reactions to other people are governed by his social impairments. They don't know that his executive function isn't fast-moving enough to always think his actions through to their inevitable conclusion. All strangers see is a six-year-old that is acting in a manner different than how they expect a six-year-old to behave.

I don't consider Jack's autism to be an excuse to behave badly. I expect him to be polite, to be nice to other children, to take turns, and to do all the things any other child would do. But he can't always get there, and it is not because he is a poorly behaved child. It is because he is autistic. And he is trying. He really is. But he still gets judged as if he were a typical child.

And that makes me so sad. Because he is a good kid. And he deserves better.

I wish I knew what the answer to this is. As a parent, it is difficult in the heat of a moment to remember that you may not have all the information you need to pass judgment on a strange child. I know I try to be very careful to not judge other children based on my expectations of how they should act, but even I, who spends time on the other side, can't always remember to be tolerant. So I can't expect other parents to always be aware.

I don't want Jack to hear me apologizing for his behavior by saying, "He's autistic." I don't want him to think that being autistic is bad. I also don't want him to think that he can do whatever he wants because he is autistic.

I just wish that the general public was aware that you don't have to look disabled to have a disability. And I wish that there was a little more tolerance from strangers who don't always have the whole story.


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Jean Winegardner

When Jean had her first child in 2001, "autism" was about the scariest word she could think of. Six years later when her second child was diagnosed with PDD-NOS, a form of autism, she was just happy to have a word to help him get the services he needed. Her autism journey has been full of tears, laughter, love and at least one attorney.

Jean blogs about her life with her autistic son, Jack, on her blog, Stimeyland. Her two neurotypical children, Sam and Quinn (one older, one younger than Jack), make frequent appearances there as well. Also at Stimeyland? Jean's quirky sense of humor.

She also runs AutMont, an events calendar listing autism-related events in Montgomery County, Maryland.

Raising a child with special needs is hard for so many reasons, but after living with Jack, Jean wouldn't trade him for anything in the world. Come along with Jean as she experiences the joys that come with parenting a special kid.

You can email Jean anytime at stimeyland at gmail dot com or follow her on Twitter, where, as "Stimey," she offers her world view in snippets of 140 characters or less.

Contact Jean Winegardner

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