What’s In A Name?

diagnosis From: Happy Aspies

I have been thinking a lot about Wolfie’s diagnosis and what it means to have one. It seems that more and more people on the spectrum are being diagnosed with other things on top of the ASD. They call this co-morbidity. Why must everything surrounding ASD’s be so doom and gloom?  I don’t see his Asperger’s as an illness at all. I see it as a difference in how his brain works and how he makes connections to his ideas and his surroundings.

I have no doubt that, given some of the challenges he faces on a day to day basis, seeking a doctors opinion or care with any regularity about those things would result in a prescription. It would also result in some other diagnosis on top of the Aspergers. There are symptoms of his Asperger’s (and I am speaking only of my son, not anyone else who may have Asperger’s) that sometimes look like Oppositional Defiance Disorder (ODD) or Attention Deficit Disorder (ADD). But these symptoms are not present all of the time.

The ODD -like symptoms are present right now with respect to rules he is asked to follow that he sees no logical reason to follow. He is seven and he is desperate to be independent, yet he struggles with understanding the social expectations that are present everywhere. Even the ones he understands he does with an unconventional flair. I’m okay with that. What is interesting to me is the way he has catagorized the heirarchy of whose rules he has to follow and whose rules might be flexible.

He has developed a habit of saying “nope” to me pretty much anytime I ask him to do something like brush his teeth or get dressed or really anything he doesn’t feel like doing, but is expected to do. When I approach this with a choice like “if you don’t brush your teeth you will get cavities and then you won’t be allowed to have any sugar because your teeth will hurt”, usually results in a response from him like ,”Oh, fine. I’ll do it one minute.” This is a good time for me to tell him thanks for seeing my side of things and next time maybe just ask me for another minute instead of refusing.

The trouble is, I don’t always respond that way, and neither will the rest of society. But interestingly, he doesn’t respond that way unless he knows the person really well. He would never respond that way to a person of real authority like a police officer or pricipal of a school. He would respond that way to a teacher though. Why? Because he says the police officer and the principal are the boss. In his mind, the police are the boss of me and the pricipal is the boss of the teacher.

His ADD-like symptoms are present when he is bored. It’s as simple as that. At school, he is completely unsatisfied with most of the classroom stuff. Worksheet and writing exercises are so mundane. He has been writing his name clearly since age two and reading since age three so you can see why at age seven practicing writing his letters over and over again might result in not wanting to do it or moving around a lot. At home, I see these symptoms when he is looking for something to do and can’t quite figure out what it is that he wants. I have felt that way too. It’s called boredom.

I am going on and on about this for a few reasons. We have now been declined twice for health insurance for my son. Why? Because he has Asperger’s. How sad that this brain difference, that for my son poses no health risk, is being considered worthy of recoiling  from completely. Maybe I am over simplifying when I suggest that this is one of the biggest forms of social protocol gone wrong that I have ever seen. To deny people coverage because they pose a risk of some kind? Why have insurance then? To look cool? To be able to say you have it?

To make matters worse, or better, depending on your situation, if you join a “group” it’s suddenly no big deal that you have a kid on the spectrum. I’m sure there is some explanation for this, but it seems like a load of B.S. to me. Thankfully for our family, my husband is self-employed and in our state you only need two employees to qualify as a group. I write this with pride as the new “office manager”.  My heart goes out to those families who for whatever reason don’t have this as an option.

All of this could be avoided if Asperger’s weren’t considered a pathology or disorder. Some of our societies greatest inventors and achievers are believed to have had Asperger’s. The stigma of illness or disorder is doing these great people an incredible disservice. For society to hold people with Asperger’s on the one hand as if they were sick and needed to be cured and on the other hand brilliant for inventing things that have made life better and a hell of a lot more interesting is mind boggling to me.

I hold out hope that this will change through the education and advocacy being done on the part of my son and people with Asperger’s everywhere.

Stephanie Stewart
I don’t have asperger’s syndrome, but I am married to a man who does and we have two wonderful little boys. Our oldest son, Wolfie, is seven and has asperger’s syndrome.
Stephanie Stewart

happyaspies

I don’t have asperger’s syndrome, but I am married to a man who does and we have two wonderful little boys. Our oldest son, Wolfie, is seven and has asperger’s syndrome.

0 thoughts on “What’s In A Name?

  • August 18, 2009 at 7:58 pm
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    Congratulations on your new position as office manager!    + 

    Well I always handled boredom in school by daydreaming and hyperanalysing everything.  It was socially acceptable to the teacher because usually I didn’t disturb anyone.  (Unless they caught me pretending that my pencil was a rocketship or whatever.)  I always enjoyed sinking into my own little world of imagination, although I’m not sure it was the “healthiest” thing to do.  Maybe I should have been more social and passed notes or whispered or whatever.  I might have gotten into trouble with the teacher, but it might have helped with my social development.  Yeah, it probably would have been better if I had misbehaved more often.

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  • August 18, 2009 at 9:46 am
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    Not quite sure how to put what I’m thinking into the right words, so forgive me if it comes out a little screwy… Maybe it’s just that different people are wired all different ways and this is just one way to identify some of us who are wired in a similar manner. I could easily sit and classify most apparently “NT” people into smaller groups as well. If I were a psychologist or psychiatrist who was well known and respected and then I started labeling these categories of apparently “NT” people and calling them “Syndromes” or “Disorders” would that make them a “new” thing requiring a “diagnosis” and “treatment”. I can see through people well enough to put them into these new little categories… and some of them are as simple as “Only Child Syndrome”… almost EVERY person I know who grew up as an only child has some very similar personality traits. (We are pretending for a moment that I am a “real” professional here.) Say I write my Theisis on this phenomenon and it is published and well recieved by the psychiatric community, because I am, after all a fantastic writer and can prove my point effortlessly… I could back up my findings with research, questioning the parents, spouses, boy/girl friends, co-workers, and “children” themselves. I could begin working with only children to determine how to “fix” them and publish the results. It would take some time, because the treatment would have to follow them into adulthood to see if it worked. And VOILA! We now have in the official book of Syndromes and Disorders (the name of which I have forgotten at the moment) “Only Child Syndrome”… and it is diagnosed rapidly and quickly gains sub-categories… and suddenly everybody on the planet has a “Syndrome” simply because they share commonalities.

    I am speaking rather satirically and absolutely hypothetically, but do you see what I mean? I picked “Only Child” because that was the first thing that came to mind since I am NOT an only child and have had “trouble” with lots of people who are… so that just furthers my point. I picked it out simply because I had “trouble” with people who share that common ground and because they all caused pretty much the same kinds of trouble for me. So, even if I did publish the paper, it was founded on something that had nothing to do with science or medicine… and everything to do with personal experience. For all we know this Asperger guy had either a friend to defend or an enemy to defeat, and we wound up with a common set of personality and processing traits being labeled as a Syndrome. It is not to say that I am downplaying any of the struggles a person with Aspergers has… believe me, I lived through my own childhood and it was not easy. Perhaps though it is simply something to be understood and accepted and worked with… AND Aspies have something to teach the world as well. Perhaps the world needs to see through the eyes of Aspies as much as it goes the other way around?

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  • August 18, 2009 at 12:49 am
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    I think Wolfie is very good at seeing through what authority really is.

    It means he won’t just follow orders.

    Asperger himself was very well aware of this danger, which is why he wrote his paper in the first place, and introduced this population to the world at large.

    Too bad the English-speaking society did not see it on their clinical screens for another nearly 50 years.

    Shows you we need much more divergent thinking out there.

    The ‘group’ insurance is a sensible idea.

    Ah, boredom! That is a tough one. Especially when so much of what makes an Aspie happy is the firing and direction of interest.

    Have any of you here read the bit in Thinking in Pictures where Temple Grandin talks about ‘sins of the system’? She was able to work out, when she went to college, that if she didn’t smoke or have sex, she might have more freedom into things like going into the forest. I think it was her first college. There was a whole interesting paragraph about the way people with autism understand rules.

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