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.

Tuesday, August 17, 2010

People Should Stop Using the 'R' Word

There are still too many people using words that reinforce the negative stereotypes of all who struggle with disabilities. I have made an effort to avoid using certain words because they can be derogatory in nature and they undermine the efforts of all those fighting for awareness. Just the other day I overheard a conversation on the train involving the ‘R word’. These incidents always leave me both frustrated and upset at how easily people forget just how hurtful their words can be to all individuals struggling with physical and developmental delays. The term is used so loosely and it seems people either do not realize or simply do not care that the individual or family and friends of those affected may be standing nearby. I do not think people should use the word as a joke, which is exactly how the young lady on the train was using the term.

As a special needs parent, when I hear the ‘R word’ I am reminded how much more progress is still needed on the awareness front. I would imagine if all those who use the word could experience what we do on a daily basis, they may reconsider their choice of vocabulary. Since my son struggles with a significant speech delay, sensory related issues, and behavioral problems (tantrums), please do not be surprised if I refuse to laugh at a joke that seeks to further marginalize him and all those on the autistic spectrum. If others could see the look of fear and anguish on my son’s face at the doctor’s office or when he experiences a meltdown transitioning from one activity to the next, perhaps they would agree with me. How else can people really understand unless they experience the daily struggles of a special needs family? If I explain to them that they should not use the word and it is hurtful, they may feel bad for a short time and then forget all about my son or my situation a few hours later. I would like to think that as more people stand up for individuals affected by a disability, then the more people will begin to understand that our use of language is essentially ‘de-humanizing’ a portion of our society.

What do you think? The next time you hear someone using this offensive word, will you bring it to their attention?

Thursday, August 5, 2010

Echolalia - "Are you okay?"

One of our son's biggest hurdles along the way has been his speech. He would refuse to work with his speech therapists during our time with Ealry Intervention and what little work they managed to get out of him was done through tears. We changed therapists a few times to try and find one he worked better with but the sessions were not that much better. He would save the biggest and most severe tantrums for the speech therapists. He would force himself to vomit at the beginning of every session. While we knew he had a speech delay it became apparent that even the thought of having to speak would get him angry. How could we get him to even make one word requests? If we could get him to use "eat" or "tired" or "juice", that would have made a world of difference. We had to guess at what he wanted most of the time because he wouldn't use any words. If we guessed wrong he would scream and cry. He was as frustrated as we were because we weren't always able to guess correctly.

After a lot of work and even more patience he began to repeat a few words in order to get what he wanted. "Juice" became our favorite word because it was the one he used first and it represented a major breakthrough in his speaking abilities. That and "movie" were the extent of his spontaneous speech, which makes sense because those were and continue to be his two favorite things in the world. What also became evident very early on was that Diego is echolalic, as I'm sure many other parents of children with autism have discovered about their own kids. He repeats the word "say" when prompted by my wife and I to "Say please" or "Say thank you..." When given a food item or toy he does not want he will say to us, "You don't want it?" in the form of a question because he has heard us repeatedly ask him this. For a long time after tripping, or throwing himself down when upset he would exlcaim, "Are you okay?!?" since we usually ask him that after he falls down. After a few months he would also add, "You're fine" before getting up and going on his way. He essentially took the question and encouraging comments we used and spoke them out loud for us because as far as he knows that is what one is supposed to say when that happens.

Our son has made quite a bit of progress with his speech based on where he was at the time of his diagnosis two years ago. Some of the phrases he now uses are: "need help", "eat food", "I want juice", "go down slide" (meaning he wants to go to the park) "more tickle" "hug" "bye bye car" and "where's mama" (the only time he will call either of us by name). We are beyond thrilled with all of this progress! Like jumping up and down excited! Yet I can't help but worry that the echolalia may cause problems in the future because he may come across as antagonistic if he repeats what someone tells him. I've heard stories about cops stopping an individual with autism and asking questions only to have their questions repeated back. At that point the cops treated the person as hostile and a scuffle ensued. That bothers me. So I wonder, how will his speech continue to develop? What other tactics can we use to help him with his echolalia? Will he continue to make positive strides in spontaneous speech?