Wednesday, August 18, 2010

Autism is not Invisible Anymore

Christmas usually means a day of relaxation and family meals. 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 may 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 him 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 is 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 bins. I collapsed the stroller and quickly put that up so it could go through 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 is my wife, who goes through holding the baby. That leaves Diego standing by himself and waiting for one of us to help him, as he is unsure what to do next. I curse under my breath knowing I took a few extra seconds we did not have getting that stroller up on the conveyor belt. My wife, not realizing I had a delay getting our things to fit through the machine, turns to see me just walking up to help Diego. The security officer insists he must pass through the metal detector on his own. We try to explain he is unable to follow the command because he is mostly non-verbal and needs our assistance. He is already visibly upset at the shoe removal process and the entire airport scene in general. So what does he do? He throws himself on the floor in front of the metal detector and screams and cries. Miraculously, this forces the guard to realize that, on second thought, yes we probably should help him through since we are holding up the angry mob of people in line behind us trying to catch their flights. One guy in line decided to run past and ask as he passed by, “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 manage to help him through, collect our things and proceed to the gate. Things didn’t necessarily calm down as we arrived at the departing gate. I imagine it was all the wide open space calling his name because as we wait to board the plane, our son refuses to do anything but run from gate to gate, pausing every now and then to make sure I am following right behind.

In August of 2008, Diego was diagnosed with an Autism Spectrum Disorder. Along the way I have noticed the impolite stares directed at my son when he is having a tantrum in a public setting, just as the one described above. I would imagine the people who look at us in that way believe my wife and I to be bad parents, and that his behavior is a direct reflection of our failure to properly discipline our child. What they do not know is that my son has an extremely hard time transitioning from one activity to the next. They also are missing another important piece of information regarding my son; at age three he lost his voice for a period of three weeks because he developed calluses on his vocal cords. Since he struggles with a significant speech delay and has had trouble expressing his wants and needs, he screams out in frustration. 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 him improve his communicative skills so he does not have to yell. Yet, 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 help diffuse the situation. Therefore, if I allow myself to be overcome with anger at their lack of understanding 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 something 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 that feel the same way. It 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 that most people need to be able to identify the ‘difference’ as it serves to reinforce their view of society. If something comes along to upset this delicate balance than they begin to question their ideals, leaving them 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 is constantly increasing, and more and more people will be forced to deal with this issue as it begins to affect their own family and friends. This is what makes autism awareness so important. The issue needs to be brought into the mainstream so that people are 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 many. That has to change.

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