Friday, September 10, 2010

Autism Is Not Invisible Anymore

Lou Tecpanecatl
ourlifewithdiego.blogspot.com

Christmas is supposed to mean a day of relaxation and family meals. But last year, we decided to visit my parents in Ohio, and we booked a flight on Christmas Day.

We knew in advance that flying with our older son, Diego, was going to be stressful because he might feel the need to get out of his seat to walk around and we were not sure how he would handle the airport crowd. We arrived well in advance of our departure in order to check our luggage and to make sure the kids had a chance to eat.

Things were going relatively well until we got to the security checkpoint. I was in charge of keeping Diego from getting out of line and running somewhere else. My wife and I frantically unloaded the stroller and removed the baby's jacket and shoes (he was six months old at the time, and this seems ridiculous to me but we were told to remove his shoes as well) and threw all our stuff into the bins. I collapsed the stroller and quickly put that up so it could go thru the x-ray machine.

I knew I needed to hurry in order to prevent a major meltdown but I already felt the control we had over the situation fading fast. Our nemesis that morning, as we had anticipated, was the metal detector. Up first was my wife, who went through holding the baby. That left Diego standing by himself and waiting for one of us to help him, as he was unsure what to do next. I cursed under my breath as I took seconds we did not have getting that stroller up on the conveyor belt.

My wife, not realizing I was delayed, turned to see me walking up to help Diego. The security officer insisted that our son must pass through the metal detector on his own. We tried to explain that Diego was unable to follow the command because he is mostly non-verbal and needs our assistance, and that he was already visibly upset at the shoe removal process and the entire airport scene in general.

So what did Diego do? He threw himself on the floor in front of the metal detector and screamed and cried. Miraculously, this forced the guard to realize that, on second thought, yes his parents probably should help him through since we were holding up the angry mob wanting to catch their flights. One guy in line decided to run past and asked, “Do you mind if I go ahead?” Did he think I was going to try and stop him and cause an even bigger scene?

After a few failed attempts we somehow managed to help Diego through, collect our things and proceed to the gate. Things didn’t necessarily calm down when we arrived at the departing gate. I imagine it was all that wide open space calling his name because as we wait to board the plane, our son refused to do anything but run from gate to gate, pausing every now and then to make sure I was following right behind him.

In August of 2008, Diego was diagnosed with an Autism Spectrum Disorder. Along the way I have noticed the stares directed at my son when he is having a tantrum in a public setting, like the one he had at the airport metal detector. I imagine that the people who look at us with impatience believe my wife and I are bad parents, and that our son's behavior is a direct reflection of our failure to properly discipline our child. What they do not know: That my son has an extremely hard time transitioning from one activity to the next. They also don't know that at age three he lost his voice for a period of three weeks because he developed calluses on his vocal cords.

Since Diego struggles with a significant speech delay, and has always had trouble expressing his wants and needs, he screams out in frustration. At age three, after repeated bouts of yelling, he began to lose his voice. The throat specialist we visited, who spoke to us without even realizing the irony of his comments, told us we should try and curtail his screaming. I practically fell off the chair. What did he think we were trying to do? We are constantly trying to find ways to help our son improve his communicative skills so he does not have to yell.

Mid-tantrum, we are doing our best to handle the situation in order to prevent any further escalation of anger and screaming. To turn our focus away from him when he is the most vulnerable is not going to diffuse the situation. And if I allow myself to be overcome with anger at other peoples' lack of understanding about autism and how it affects my son, then I am not concentrating on him and his needs at that time. Afterwards, when we he has calmed down and we return home, or during other quiet times, I look back and think about how our son’s actions were perceived by others around him.  The looks have become more frequent as my son has gotten older; he is now four years old but is big for his age.  I fear that as he matures and his behavioral issues continue people will become even less tolerant of any stimming activity or tantrums
          
I have often heard autism described as an ‘invisible’ disability. I certainly understand the idea behind that description, but it is not a concept I can actually embrace. It is not invisible to me because my family experiences autism on a daily basis. For me it is everywhere, and I’m sure there are many other families who feel the same way. Autism is a disorder that has prevented my son from being able to tell us when he is sick, and causes him to shut down if he is over-stimulated. Yet, for the majority of the population someone is only identified as ‘disabled’ if they are confined to a wheelchair, or if their disability is noticeable upon first glance. It seems to me most people need to be able to identify the ‘difference,' otherwise they are confused as how they should react.

Many people in this country may never have any interaction with a developmentally-disabled individual. Their view of autism may be seen as someone else’s struggle, as a small segment of the population being helped along the way by their parents and a team of therapists and teachers.  However, as many of you already know, the number of children being diagnosed with autism is increasing, and more and more people will be forced to deal with autism as it begins to affect their own family and friends.

This is what makes autism awareness so important. Other people need to be able to recognize the early signs of autism and to also create a better overall understanding of the disorder. Most people know about cancer, AIDS, diabetes and other serious medical conditions, but how many people who are not directly affected by autism know much about it? Not enough. That has to change.

----

A version of this essay was originally published at ourlifewithdiego.blogspot.com.