The Autism "Epidemic"

It seems that there is rarely an article about Autism that doesn’t mention that it is growing at “epidemic” proportions. On the face of things, the numbers most certainly do support the idea. After all, the number of diagnosed Autism Spectrum Disorder cases has risen drastically since the 1970’s.

Of course, like so many things, the numbers are not quite accurate. One of the primary problems with the concept of an “Autism Epidemic” is that the criteria defining an Autism Spectrum Disorder have change drastically since Dr. Leo Kanner originally used the term Autism to describe a group of children in a 1943 paper. After all, the current standards used for diagnosis of an Autism Spectrum Disorder was originally put to pen in 1980 in DSM-III and was revised in 1987 in DSM-III-R. It was again revised in 1994 in DSM-IV. With this constantly changing and refining of the diagnostic criteria, it is near impossible to compare the number if diagnosed cases.

A common rebuttal to the difference in diagnostic criteria is to look only at the number of sever diagnosis. Even this, however, does not truly take into account how different the understanding of Autism is. As an example, think of an individual with sever retardation and Autism. Prior to 1980, the diagnosis of Autism may very well have been lost in the sever retardation diagnosis.

One of the most glairing mistakes is when the total number of people diagnosed with an Autism Spectrum Disorder is compared, even in recent years. Part of the problem here is the varying age at which people are diagnosed and the difference in diagnosis. A person who at age 6 would have easily met the criteria for Autism may very well only meet the criteria for PPD-NOS at age 13, due to coping mechanisms. An example with the varying ages of diagnosis can also be seen in me and my son, Connor. Although Connor showed signs of Autism from birth, it wasn’t until he was almost 4 that we were able to get a clinical diagnosis. Connor didn’t suddenly get Autism in 2004, yet according to the statistics, that year the number of people with Autism grew by at least one. Further convoluting this is that I have never been diagnosed. If I were to seek out a diagnosis, which would most likely end up being Asperger’s Syndrome since I have no evident delay in communication skills (mostly thanks to great coping mechanisms), there would be yet another case of Asperger’s Syndrome in 2006, raising the numbers supporting the concept of an “epidemic”.

Now, I have to admit that there is very likely an increase in the number of cases of Autism. Most likely, this isn’t due to some wide spread “epidemic”, instead it can be attributed to the growing number of people who have an Autism Spectrum Disorder procreating. After all, between my wife and we have two sons. Both of my sons are in the Autism Spectrum. So, one adult with on the Autism Spectrum has begat two sons with on the Autism Spectrum. What if I had 4 or even 6 (oh my) children and all, or even half of them were on the Autism Spectrum? I would personally be accountable for spreading the “epidemic” of Autism.

Lastly, and one of the most upsetting things, is the use of the term “epidemic” itself. You see, an epidemic is a wide spread outbreak of a disease. Autism is not a disease, it is a neurological disorder. The term “epidemic” simply can not be used here. Using this type of terminology furthers the horrible misunderstanding that Autism is a plague in desperate need of a cure. It is disgusting that such highly visible (self proclaimed) Autism activist groups, such as the Autism Society of America, continue to perpetuate this misunderstanding.

I expect too much from people.

Last Friday evening, the hospital I work for had an employee event. The event was tickets to see our new home town ECHL hockey team in the brand new arena, truly a fun evening for everyone, or so I thought.

My son's, having never been to a hockey game, were understandably excited about this new experience. Of course, my wife and I didn't curtail their excitement much, being lovers of hockey. As with any activity, I had some concerns about how Connor would act, but I figured at a hockey game, everyone is out of their seats yelling and having fun, so no one would notice the silly kid flapping his hands.

Well, the evening started with a little bit of a challenge, as Connor became a little to excited and had an accident. This was unusual for him, and my wife and I were caught unprepared. Luckily, there happened to be a spare set of sweats in the car, so I was able to get things back on track rather quickly. Connor and I, having been separated from my wife and Aiden due to the accident, went into the arena and walked around a bit looking for our seats. After a little bit of back tracking, we discovered the right stair case and got where we needed to be.

Since my hospital had purchased the tickets, we were sitting with my co-workers to our sides and behind us. That made me feel at ease, since they were all aware of Connor's behaviors and would most certainly be understanding. My feeling of ease was lessened when I saw some people moving to take the seats in front of us.

As our new front neighbors took their seats, I saw what I felt was a good sign. The young man with them had Down Syndrome. To top it off, one of the ladies in the group had a T-shirt from a Special Olympics event. My heart was warmed. "How could we have been so lucky as to have a person who understands special needs in front of us?" I asked myself. Unfortunately, I expected far too much from them.

Even with the excitement of a hockey game, Connor found it rather difficult to sit still and started to kick the seat in front of him. Noticing it, I tried all I could to get him to stop, and finally moved him to a seat with an empty seat in front of him. The person in front was agitated at his kicking, so my hope was that by moving him, I would resolve any concerns. Unfortunately, Connor continued his seat kicking with the empty seat in front of him. The vibrations must have carried through the seats, as the second woman from the group asked that he stop. At that point, the first person decided to add her comments of how rude my son was and continued with a "what's his problem" comment.

I was disgusted. Sitting in front of me were two people who obviously had experience dealing with a special needs child. They, of all the people in the arena that evening, would be my first pick of people when looking for some understanding of the challenges of a child. I leaned between the two women and stated "I'm very sorry about the kicking, my son has Autism and it is very difficult for him to sit still in such an overwhelming crowd." The most boisterous of the two, the one wearing the Special Olympics shirt, rolled her eyes as if to say "what ever!" while the second stated "thank you" in a rather angry voice.

In conclusion, the three front neighbors finally decided to move to some empty seats a few rows ahead. As a parent of a special needs child and as someone who faces the same challenges myself, I try my best to be understanding of other people's challenges. I also tend to presume that someone in a similar situation would have the same understanding... but I guess I expect too much from people.

Communications, or lack there of

I have written this sentence at least 5 times already. Each time, I erase it and start with another attempt at explaining the frustration in my head. One of the greatest challenges I have faced as an adult is my inability to communicate properly. This has affected my personal life and my professional life. Even now, when I am sitting down to the computer (one place where I feel the most comfortable) I find it difficult to express my thoughts and ideas easily.

The extent of my communication problems is not as simple as writers block though. An example of my most frequent challenge is at work. In the course of my job, I frequently need to call sales reps and discuss projects and products we need. Usually, I am able to do this without too much trouble. But there are some days when, for no apparent reason, I can not force myself to pick up the telephone. If I eventually am able to do it, the conversation is painful. My stomach becomes upset and I completely loose my ability to listen during the conversation. I also can not develop any words to express my thoughts. The same seems to apply at home with family and friends.

Another problem is my lack of ability to express emotions in my writings. For some reason, when ever I write something, it tends to sound more akin to a technical manual then an expression of my feelings. When I look back to high school, I find the most glaring example of this. I was taking an English course on short stories and received an assignment to write a story using imagery. So, I wrote a story about an incident that was a rather traumatic incident to me. In the story, my description of the events was rather unfeeling and almost meticulous in the details. To properly describe any emotions, I had to use imagery of the weather. Even in doing that, the one response most readers offered to me was it didn’t seem like the reactions of the person in the story (who was actually me) were right due to the lack of emotion. Don’t miss understand, I have a great deal of emotions, but describing them and being able to properly identify them is very difficult.

I am not sure what the answer is to all of these communication problems, but I do know one thing: I need to post this message now before I erase it, as I have my other 20 attempts to talk about communication problems.

Disneyland

Something I really wanted to write about was our trip to Disneyland. We had a wonderful time there and really enjoyed it. In case anyone is wondering, the 6 movies being played at the theater on Main street are Clockwise from the door:

• Mickey's Polo Team
• Traffic Troubles
• The Dognapper
• The Moose Hunt
• Steamboat Willy
• Plane Crazy

I know, you probabley don't care, but that is something new that I commited to my memory while I was there. It was on our last day there and myself and the boys were a little tired, so we stopped into the theater and watched each of the movies. This wasn't the first time we sat there to watch them, but it was the first time that I actually paid attention to the names of the movies. The one thing that bothers me there is that only a couple of the movies have sound playing for them. In patricular, Steamboat Willy and Traffic Trouble have sound. It's possible that one more did, but I couldn't tie the sounds to any particular movie. It would seem to me that they would play all the sounds or none. Of course, playing all of the movies sounds would end up in an overwhelming mess.

Perhaps tomorrow I will post a little more about our trip.

Lack of updates...

Ok, so the updates are pretty few and far between lately. I want so badly to do it, but it's difficult. I am going to try to compose an entry later this evening or tomorrow that talks about my communication problems.

I am also planning on trying harder to update the blog a little more frequently.