When autistic behavior is misunderstood

Parents of children with autism often have a difficult time going out in public. It can be hard to manage a special needs child’s wants, needs, and reactions in an unpredictable environment. It can be hard to teach your child about social skills while you are in the thick of trying to control their unconventional behavior. But one of the hardest things to deal with is the looks and the comments that other people give your autistic child when they are just being themselves.

This behavior often keeps parents of autistic children from going out in public. For many of us, it is easier to just keep our kids home than to have to endure other people judging them based on their disability. It is kinder to keep our kids home so they don’t have to see and hear the way uninformed and unkind people look at them and talk about them.

A recent post by blogger Smockity Frocks has sent the autism blogosphere into a tailspin. Many of us see the looks, mumbled comments, and unpleasant attitudes from strangers around our children, but wonder if maybe we’re being hypersensitive. Maybe these strangers aren’t really judging our children. As is evident in Smockity’s post, “In Which Smockity Considers Jabbing a Ball Point Pen Into Her Eye” (which she has since taken down, but is available through Google cache), we are not being hypersensitive.

The post is a blow by blow account of her children’s encounter with a young girl in a library. Her description of the child’s behavior is so clearly that of an autistic four-year-old and a caregiver who was trying to positively reinforce turn-taking skills. Instead, Smockity saw a badly behaved little girl flapping her arms and saying repeatedly, “I’m being patient,” and was anything but. Knowing children with autism, I believe that girl was really trying hard.

The post itself is very hurtful and the comments are worse. People responded with praise for this blogger for not making a scene. They praised her for her restraint. They laughed at her wit in making fun of a young girl. They suggested that the caregiver should have apologized to Smockity. Once parents of autistic children started to chime in, the blogger responded defensively, closed comments, and then subsequently took down the post.

It was painful for me to read this post. Just the other day, I was at a museum. My kids were not completely thrilled with the exhibit and were a little bit boisterous, but nothing out of line. Jack, my autistic child, was wiggly and enthusiastic. He squeaked a little, he jumped up and down a little, and he did a little twirling. He tried to get close to the exhibits. Trust me, I was on that kid like glue to make sure he was behaving correctly. But my definition of “correctly” and yours might be different.

There was a trio of older people whose path we kept crossing. At one point I saw one of them make a face and mumble something under her breath. It sounded like, “out of control.” I tried to assume the best, that maybe I had misunderstood and that she wasn’t talking about my child, who was not being bad. He was being autistic.

I thought of this while reading Smockity’s post. To hear her not just judge this child, but to make fun of her repeatedly (sample quote: “The flapping intensified until I thought we all might witness the first recorded occurrence of self propelled human flight.”) makes it clear that I am not hypersensitive. There are people out there who think Jack is bad. Who think I am a bad parent. Who don’t want him around. That’s not okay with me.

I want to make something clear here. I do not believe that autism is an excuse to misbehave. I expect all three of my children to behave themselves. There are behaviors that I insist on and when they do something I do not approve of, I speak to them about it and I discipline them for it. Just as with any other child, there are behaviors that I allow and there are behaviors that I don’t. I am trying very hard to raise children who can operate appropriately in society.

Just as you would not insist that a person with Parkinson’s disease should not have tremors, you cannot ask a person with autism to behave in a manner that is not consistent with his or her neurological makeup. Not to mention that there are some behaviors that my children haven’t mastered yet. We are working on them, and they are a work in progress. I refuse to apologize for my son, who acts in a developmentally appropriate manner, even if that manner is not what the public at large expects.

I emailed Smockity, and she was gracious enough to get back to me. She has received a lot of hate mail over her post. While I agree that her post was insensitive, I suggest that hurling insults in either direction is not the way to create autism awareness. Just as we want our children to be treated with respect, we should treat all people with respect, even those with whom we disagree.

She did not respond to a further question I had, which was this: I asked her if she were put in this same situation today, would she look at the child differently than the last time. I don’t know if she will. I hope she does. I hope that she and her readers—and the world at large—grows to understand that our children, who may not have an easy disability to watch, are still good kids. I hope she and others can learn that our children deserve the same respect as any other person, and that just as we rightfully accommodate other disabled people with things such as ramps, we should accommodate our autistic members of society with understanding and a lack of judgment.

To do otherwise is unfair—not just to people in the autism community, but to all people. Our kids (and adults) have every right to live in the world with typical people. Not only that, but they have so much to offer the typical world. Keeping them isolated from society helps no one.

So I ask that next time you see a child acting unusually, or next time you see a person who is acting in a way that you consider inappropriate, take a minute to consider that you don’t know the whole story. Understand that there might be factors at play that you aren’t aware of, whether they be behavioral, emotional, medical, or something else. Remember that some disabilities are invisible. But mostly understand that the wonderful diversity of all of our members of society makes our world as a whole better. If we all work together with understanding, compassion, and kindness, we can grow as a people.

If you are interested in reading more reactions to Smockity’s post, please visit Squidalicious or Liz Ditz‘s sites where they are keeping lists of links to posts responding to the original piece.

Jean blogs about all three of her beautiful children at Stimeyland and runs an autism events website for Montgomery County, Maryland, at AutMont. She also writes an autism column for the Washington Times Communities called Autism Unexpected.