Tuesday, August 19, 2014

Autism & Anxiety - "Tomorrow is Death.."

It is a well-known factor that anxiety often exists in correlation with autism. Perhaps all of us, to a degree, has experienced some form of anxiety during our lifetime for whatever reason. Maybe you are late for an important appointment or job interview, maybe you know you will not have enough money to pay your mortgage that month. That uncomfortable feeling comes over you. Your entire body tenses and you just can't shake this overbearing sensation of feeling stressed out and uptight. Your heart rate increases.You might even feel nauseous and start talking to yourself, as if you are trying to find a solution to this cause of your anxiety. Maybe you are even yelling to blow off some steam. Eventually, you say to yourself, "I'll be OK", or "It'll work out" as your brain is racing trying to figure out a solution. The tense feeling in your body starts to loosen up, you start to relax and your heartbeat returns to it's regular rhythm. You now feel relaxed and back to your normal self within a short matter of time.

Often times, children with autism and anxiety do not have this "automatic" self-soothing skill. It must be practiced and taught during calm periods and in small doses. In addition, the cause of the anxiety becomes almost an obsession of worry, and a vicious cycle starts. They change their habits to avoid the stressor, or cause of the anxiety. In fact, they avoid it at all costs. It is painful to feel this way, a sense of doom if the source of anxiety, or even the thought of it, is present.

Nugget, my nine year old son, has a diagnosis of autism and general anxiety disorder. His anxieties are a daily challenge for him and they can occur everywhere at any time, with any person. Imagine feeling like that. The things you fear most can happen at anytime, and by any person. Well that almost sounds impossible, doesn't it? How can something that creates such anxiety strike anytime and any place? How is it possible that another person can be the instigator of his anxiety?

Nugget has word aversions, rather a deep in-grained phobia of certain words being said. The difficulty with this particular phobia, is that nobody knows all the words he fears. Not even me. Not only is this a major stressor for him, but this also creates a significant challenge when trying to teach social skills. You can't make many friends, or even socialize, when you freak out because somebody said the word, or in fear that they will say the words, "pregnant"; "inhalant";  "venomous"; "smurf"; "algebra"; "sobbed", or "plasma", and that is just a few mentioned from the "black-listed" word list.

Back some time ago, I started keeping a list of all the words we knew he didn't like the sound of. Curious, I wondered if he was doing some negative visual association with these words. After explaining what I was going to do, I found a book and showed him a picture of a pregnant woman and asked if that bothered him. It didn't, in fact he was looking at the word pregnant. He said that didn't bother him either, but he immediately reminded me to not say the word. He was tearing up and I could see the fear on his face. I quickly rewarded him for his cooperation with a lollipop and grabbed the next item - an inhaler. Same thing, no reaction to me pretending to use it and no reaction to the word "inhalant", written on the bottle. However, Nugget reminded me again not to say the word. This time he was not as anxious or worried, since it seemed he trusted I would not say the word. Curiously, I returned to the "black-list" of words, trying to find some pattern, or something that made it clear why he could not stand the sound of these words. Nothing....they didn't sound the same, they did not start with the same letter, they did not have the same amount of letters, etc.....

I started looking on the internet. I did, in fact, find that their is something called "Word Aversion". However, this was just a study that had been conducted at a University in Pennsylvania on the "most hated words". The only thing I found from this was that the word, "moist", is the most hated word amongst people with word aversions. Ironically, Nugget does not have a problem hearing this word. This was going nowhere. Nobody could give me any insight, or had even heard of this aversion, with it being such a phobia. School was of no help, the doctors Nugget was seeing did not have the answers. I needed to help my little boy. How can he go through life with this phobia, this stress and anxiety?

A year later, we finally got word that Nugget would be able to see a well-known, respected doctor in the autism community where we live. He has worked with ASD children for years, and we had finally reached the end of the waiting list. I figured this was our last hope in getting Nugget the help he needed. A week later, we were in for our first appointment. I was pleased. We set up a plan to target Nugget's anxiety. We would start one word at a time, slowly "de-sensitizing" him to hearing the word. I made up a chart at home. It consisted of 4 steps. The first step involved me giving a warning that I would be saying the word. I would immediately reinforce him for staying calm. We started with the word, "plasma". After 10 successful trials, we would move to the second step, also consisting of ten successful trials. He would need to say the word. The third step would involve anyone else being able to say the word at anytime. Once he was OK with this, I set it up so he would "graduate" this word by earning a bigger reinforcer of his choice. That would be the fourth and final step.

So far, this has been going pretty good. He is now graduated with the word "plasma", but is still in phase one on "pregnant" as it appears he is having some difficulty with step two and three. His phobia is so bad, that he fears his weekly visit to the doctor. A couple of days before the appointment, he will say he's going to die. Tomorrow is his next appointment. "Tomorrow is death", he says. He starts worrying because he thinks we will "bombard" him with all the words he fears. Tomorrow, I know he will try to barricade his bedroom door. I know I will have to do some serious redirecting and reinforcing.

So why am I doing this to my son? Why do I put him through this? Well if you have ever seen the Temple Grandin movie, you would know that she also had significant anxiety issues growing up. Her mother realized, that you still have to push your children out of their comfort zones, intensively but gently, in order for them to be functional both as a child and as an adult. The thought of my son having these fears throughout his entire life is more painful to me than dealing with it right now and helping him to learn how to independently cope with his anxieties in the future. Hopefully, we can accomplish this before his "black-listed" list of words gets even longer. I am hoping we will not have to endure the whole list of words and that he will generalize what he is learning from this, that he "survived" hearing "plasma" and that he will be able to tell himself, "It'll be OK".

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