Sunday, January 30, 2011

The Frightening "Labels"

My son is autistic.

He has other disabilities including deafness and cerebral palsy.  I knew about these early on. Sometimes he would exhibit some autistic traits, but I would read over the symptoms and I didn't think he fit into any of the categories.

After all, he made excellent eye contact. He loved to be held and played with. He interacted with us and others. His language problems were because he was deaf, right?

As he grew older, he made less eye contact. Then he started stimming. At first, just a little arm flapping, than finger flicking, then much later came the spinning  on the floor. Then finally came the agitation and difficulty interacting with others.

Sometimes people hinted about it, usually professionals, but no one ever actually came right out and said it. Maybe they were afraid to because of all the things my son and I had already been through. I don't know.

My son was eight years old before he was formally diagnosed. No one wanted to "label" him. Because of this we endured a lot of uneccessary things. He was terrified of surgeries and needles though he had to have a lot of them. We were often left sitting in the waiting room for hours and with too many people around...he would get agitated.  I was asked on more than one occasion to get my son under control.

At times, we would go shopping or some other sort of outing and he would become agitated. People treated me like I was raising a horrible little brat.

One day, there was an incident at a store where my son wanted a toy in a mesh bag. He had just started a phase where he wanted to eat inedible things (especially mesh), so I didn't let him have it. He got very agitated and started screaming. I had to carry him out of the store with plenty of dirty looks and unfriendly comments. As I was heading out the door, a man stopped me and asked if my son was autistic. He then explained to me that he had a son with autism who behaved very similarly and that he understood what I was going through.

Shortly after this, I had a conversation with his doctor. It went something like this:

Me: "OK, so I'm pretty sure my son is autistic. I think you know this too, so let's go ahead and get a formal diagnosis on this, OK?"

Doctor: "Are you sure this is what you want? Aren't you afraid of labeling him as autistic?"

Me: "Yes, I think this needs to be done. I know I can't take it back once it's done, but I think he is missing out on services that he really needs because he doesn't have a formal diagnosis."

Doctor: "OK, consider it done!"

I know that the above scenario is not the usual way these things are done...most of our journey has been a little different anyway. But this was a big turning point for us. Not only did my son start getting some much needed services that he was not eligible for  before, but all I had to say when we went places and he began to throw a fit was "He's autistic."  Surgeries are easier. We are no longer made to wait for hours in the waiting room with a lot of other people. All I have to do is explain beforehand that my son is autistic and the consequences of leaving him waiting too long and they set things up so that we are not in the waiting room very long and are moved into a holding room with a door until they are ready for him. They also sedate him ahead of time so that he is not terrified while waiting to go back to the OR.

Don't be afraid of the label "autism"  because it empowers you to be able to get what is needed for your child. Consider the difference:

Without label

Please do not leave my son and I waiting in the waiting room too long. He is afraid because he doesn't understand the surgery he is about to have. Too many people around upset him and he will become agitated and scream and bite himself if he is left waiting too long.

The usual response
Ma'am, please go and sit down. We will get to you as soon as possible. Just explain to your son the surgery and do your best to keep him calm. I'm sure he will be OK.

Now, with label

Please do not leave me and my son in the waiting room too long. He is autistic and doesn't understand the surgery he is about to have. Too many people around him upset him and he will become agitated and scream and bite himself until he bleeds. Because he is autistic, once he gets to this point I will not be able to calm him and he will terrify any of the other children who are waiting for their surgeries. 

The usual response now

Let me check his chart Ma'am...yes, there is a notation from his doctor about his autism. We will get him back as soon as possible. Let us know if he begins to get agitated before then and we can place you in a private conference room until a holding room becomes available.

This is a vast improvement from the way things went before the autism label was applied. Even people with very little understanding of autism have heard at least enough to know that accommodations and exceptions will have to be made for the person with autism.

My son is many things: wonderful, smart, fascinating, sometimes frustrating, sweet and he happens to be autistic. Does the label take away from any of the other things he is? No.


  1. Hey Kara, it's Pattie nice to meet you, my daughter has CP and my good friend has a son that is autistic so we know where you are coming from stay strong and get him involved in everything you can the sky is the limit.


  2. This story made me tear up...Thank you for sharing it with us. I teach programs for a park district and have done one on one classes with autistic children and they are so much fun to teach.

    Sarah from