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Friday, May 3, 2013

The Resistance

There's a battle that is about to play out. I've met some of those that will be involved and I don't think they are going to waiver in their steadfast belief. There's no telling how long this battle will play out, but it is one that will be fought with many people that will form a resistance of sorts.

This battle I talk about has nothing to do with the military, sports, or territory. To put simply, this battle is over a name; Asperger's. It's been a question I have received at almost every presentation in April and that is, "What do you think of the changes in the DSM-V?" Each time I answered this question I got more and more conviction in it. First, I'll give you my answer:

What do I think? I can somewhat understand why they want to make the change with the deletion of Asperger Syndrome and clumping everything into mild, moderate, or severe autism. In a perfect world this would be a seamless transition and everything would work out just fine. However, this isn't a perfect world and so often the only frame of reference a doctor has is the movie Rain Man. I know, it sounds awful as it is 2013, but it is the truth. I also want to say this isn't a slam against the medical industry, but just one case is one case too many.

So since a doctor may not have the right frame of reference, when a family raises the question of, "is it autism?" if the child can talk and if grades aren't a problem for the age appropriate child, then what issue could there be?

While we know that autism is a spectrum, some do not. The word autism instantly brings about thoughts of the extreme. This is where the word Asperger's come in. It is the middle ground, if that is the right way to explain it. And not only is it the happy medium, but it is the word that is out there. I know it, you know it, most doctors now know it, and schools know it. It's been around as a diagnosis for almost 20 years and whereas when I got first diagnosed and barely anyone had heard of it now, well, now there are movies, books, television shows, and news specials which all in all have increased the awareness and understanding of it. And if we take that name away with the awareness we've worked endlessly to get I have to ask; what will be the result? Will a person like myself fall through the cracks? In a perfect world the words mild, moderate, and severe will be widely understood. But I fear, since it isn't a perfect world, it will take a long time.

This is where the battle comes in. At every presentation I gave in April I heard someone tell me afterwards to speak up more about it. These were all professionals in the field and many of them, not all, but many of them have said that they intend of rejecting the DSM-V. If I only heard this once I wouldn't think anything of it, but obviously there is a resistance.

There is so much on the line here. This is more than a name. I'm not one who is caught up in the name and if the original name was Apple Orange Citrus Neptune disorder I wouldn't have cared. The thing I am caught up on is that the name Asperger's is established; it is known. With the changes does this mean the name dies? Will it become wrong to use it as if I'm talking about something that went out of style? Certainly, and I hope you see this, this is more than a name. This is why there is a resistance! This isn't about the name itself but rather near 20 years worth of work of awareness and understanding. Is rejecting the DSM-V the right thing? I'm not saying that, but at the same time we can't go back to square one! If we went want a world full of awareness and inclusion it takes awareness and more importantly understanding. If professionals are having a hard time understanding the changes how can we expect the general public to grasp the changes?

The battle is about to begin and there's a resistance that seems to be in it for the long haul and I personally don't think we've heard the end of the name Asperger's.

2 comments:

  1. They are also wanting to break Asperger all the way away from Autism. The only reason why i can come up with for that...is that NOW it won't be 1 in 50. It will make the ratio a lot smaller, so we won't have to worry about it so much.

    Ugh.

    I wish they would spend HALF the $$$$ they are spending into micromanaging...into HANDS ON! There are people out there that need some help.

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  2. I've had the problem with my asthma already... Every time I tell people I have mild asthma, they tend to simply shrug and wonder why I tell them, as it's mild, so not that serious. I could've simply said nothing about it, as nobody takes it into account.
    Now I gave up on using the word 'mild', even though it's the correct word. I simply say I have asthma. This actually makes sure people take it into account.

    Will the word 'mild' with autism have the same effect? "Oh, it's mild. That's not so bad, you'll be okay then." Then fewer people will take it into account, because they think it's not so bad. If people aren't aware of it, then what use is a diagnosis? Will suddenly only people with severe autism get the proper help?
    I hope not...

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