Sunday, March 17, 2013

Should Autism Be Neither Seen Nor Heard?

Yesterday, an excellent essay written by an autism mom, Amy S. F. Lutz, appeared in the online magazine Slate. [To read this article, click here.] Entitled “Where Should Special Needs Kids Be Special?”, this piece discusses the issue of how others respond to behaviors special needs people may exhibit in public places. Describing an incident in which another customer in a restaurant treated her teenage son with autism rather rudely for making noises, the author explains her frustration that her apologies for his behavior and explanation that her son has autism were met with more rudeness and no compassion. Along with her own experience, she cites three other examples from the media where employees or customers in restaurants or stores treated people with special needs quite badly. In one incident, a store employee told the sister of a man with autism that she should put him “on a leash.” While the old adage states, “Children should be seen and not heard,” apparently special needs children should neither be seen nor heard, according to some people.

In the essay, she goes on to say that as a parent of a child with autism, she has tried to show courtesy by not taking her child places where his behavior would be rather intrusive to others. At the same time, she knows that he needs experience in social settings so that he can learn to behave appropriately in public. She makes a valid point, stating, “It’s not OK to be offended by the sight of disabled people in the community or to insult them or their family members. However, neither is it OK for anyone, disabled or not, to engage in dangerous, illegal, and/or unsanitary behaviors.” Personally, I would also add "annoying" to her list, but then many people with cell phones would never be able to leave the house.

In previous blog entries, I have mentioned that Ed and I have perfected the skill of getting Alex in and out of public places so that no one would probably even know he was ever there. Because we have never wanted for Alex to be a burden to anyone, we plan any outings carefully, always aware of the potential triggers that might disturb him and always aware of the nearest exits so that we can remove him from the setting if his behavior becomes disruptive. At some points in his life when his behavior was quite unpredictable, he was basically under our imposed house arrest where he was only allowed out of the house to play in the backyard or take rides in the car. During those times, we were not about to risk his having a meltdown for anyone else to have to see.

Nonetheless, we have also wanted for him to have experiences out in the community so that he could learn appropriate behaviors. When his behavior is socially acceptable, Alex goes to stores, concerts, parks, sporting events, and restaurants. Should he suddenly become overwhelmed or simply ornery, we take him home immediately. Because Alex likes going places, the threat of having to leave if he misbehaves is usually enough to keep his behavior in line. However, we don’t always completely trust him, which means that Ed or I  (and often both of us) usually have a firm grip on Alex’s arm or shoulder to keep him right with us at all times so that he doesn’t bother anyone else. A few weeks ago, we took him to an open house being held by the company that currently provides behavior therapy for Alex. Even though his behavioral therapist had prepared him for how to behave at the opening of their new autism center, we were still leery of what he might do in a new place, particularly one that had many objects that would catch his eye, such as games, books, and toys geared for children with autism. Moreover, we are always a little nervous that Alex’s sudden movements that come with excitement might overwhelm other people, especially considering that he is six feet tall.

At the open house, Alex’s behavior was excellent, perhaps because his therapist had prepared him for what to expect, probably because she was there to give him a guided tour, and possibly because I had a firm grip on his upper arm so that he couldn’t get away from me. His therapist noticed that I was holding onto Alex tightly the entire time, and she commented on this at his therapy session the following week. She asked me why I kept my hand on his arm the entire time we were there, and I explained that I don’t trust Alex in new situations and that I don’t want him to behave in a way that makes other people nervous or uncomfortable. I suspect she thought that I was overly cautious, but I never want Alex to bother other people. Certainly, he has the right to be out in public, but he doesn’t have the right to disturb others, and yet I would hope that other people could find some understanding and tolerance for his disability that makes him different.

After reading “Where Should Special Needs Kids Be Special?” I made the mistake of reading the comments posted in response to this enlightening article. Unfortunately, several people decided to post cruel and ignorant remarks showing their contempt for people with special needs. This reminded me of a wise saying I saw posted online not long ago: “I’d rather have a child with autism than have a child who was mean to a child with autism.” As I read through various hateful comments, I realized that I’m less concerned with protecting the world from Alex than I am with protecting Alex from the world. Thankfully, Alex is blissfully oblivious to any nasty remarks or dirty looks some intolerant person may send his way. As his mother, however, I will continue to hold him close and try to shield him from those who lack compassion and cannot see beyond the idiosyncrasies of autism to the kind and pure heart God has given him. It’s truly their loss.

“But Jesus said, ‘Let the children come to me. Don’t stop them! For the Kingdom of Heaven belongs to those who are like these children.’” Matthew 19:14


K. C. Wells said...

The comments on the Slate article were appalling. I don't understand how so many people have lost compassion and common sense.

Pam Byrne said...

I think people feel an anonymity in posting comments that allows them to be less civil than they would be in person. I truly hope people really aren't that mean-spirited in real life. If they are, I feel sorry for them because they must lead miserable lives to make them so bitter. :(