labels, yet again

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Will I ever be done with talking about labels? Probably not.

I want to talk about the autism vs. aspergers label again. I did once before, mostly to talk some about the arguments in favor of everyone on the spectrum calling themselves autistic, and why I disagreed with those arguments. Well, I’ve had some more thoughts on one point in particular that I want to get into more.

“They serve to alienate those of us who do not use that kind of terminology, and those who have never received the “Asperger’s” diagnosis, by separating one group of Autistics from another.”

This was one of the arguments that I talked a bit about. Or rather, I admitted that I did not understand what she was saying. I actually still don’t, but I think it might have something to do with solidarity and/or unity. Which is a worthwhile thing, even if I think the logic showed is flawed (assuming I’m interpreting it correctly). I mean, why are those who use the word “Asperger’s” alienating those who use the word “autistic” but not vice versa? It makes no sense to me.

Jumping a bit (you’ll see why soon), one of the discussion questions on the Asperger’s Support Network facebook page was someone asking for opinions regarding merging autism and Asperger’s into a single “autism spectrum disorder” diagnosis in the latest edition of the DSM. I found some of the replies interesting.

I am not happy. Aspergers has a slightly less negative stigmatism[sic] than the word Autism. It may be out of the DSM, but I will continue to use the term. There are a lot of ignorant people out there who are too quick to slap an overly negative label on a child sight unseen once the “a” word (autism) has been used.

 

 This is tragic. I am now 50. When I was in third grade I was diagonsed[sic] with “a touch of Autism” Everyone wigged out over the word Autism. This can not possibly be useful.

So apparently while some people are possibly seeking out a diagnosis of autism for the services they’ll gain access to, other people want to avoid the word due to a stigma attached to it. I find this unfortunate but understandable – people do react in different ways to the different words. I also find it interesting because it’s very different from how I’ve been finding myself thinking about it all.

Confession time – I have been finding myself increasingly wanting to simply call myself “autistic” rather than an aspie. This is not because of any thought-out logical reason, or for reasons of solidarity or to try to avoid alienating those who use the word autistic. No, this is because I keep feeling that I could gain more legitimacy this way. I keep fearing that by using “Asperger’s” people will think that I don’t really need help, or must not really struggle. And there are the “oh, you have Asperger’s? Well, you’re not REALLY autistic” people. Maybe they’re trying to be supportive when they say that, but I just wind up feeling alienated. And even in my tiny corner of the internet, I’ve run into people who tell me that since I’m “only” an aspie, my voice does not really count among autistic voices. So I want to claim the word autism as a way to claim my place. As a way to not be alienated, to legitimize myself, to say “I count too.”

Additionally, I struggle with feeling worthless kind of a lot. Sometimes I wonder if maybe it would be easier if I could claim the label “autistic.” That maybe it would make it easier to say “I have overcome x, y, and z obstacles to get to where I am now and that is awesome” instead of saying “I have not achieved a, b, or c. That is pathetic.” Rationally speaking, it’s fairly unlikely that a simple word change would make an ingrained thought pattern go away. I mean, getting my Asperger’s diagnosis ranks among the most validating events of my entire life, but the thought pattern is still there.

Once again, I do not actually have an answer to any of this. Only thoughts and rambles. I do, however, think that we would be better off if we worked to overcome the stigma of autism, rather than simply avoided the word because it’s ooky or something. Though I say that, but I must also admit that people need to decide for themselves where their energy should go. If someone is using all their energy just to try to get help and overcome whatever obstacles are in their life, I’m not going to judge them if they haven’t any energy left over to combat other people’s prejudices and biases about a word. If they choose to use a less loaded word because it makes their life easier, who am I to tell them that they’re wrong?

Then, of course, there’s this view:

Although my son has Aspergers the specialist put his diagnosis as high functioning autism so he would get easier access to services than with an aspie diagnosis so this should actually really benefit people x

Autism means better services. This is also sad, but unsurprising given the all too prevalent attitude that Asperger’s shouldn’t or doesn’t really count.

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One response to “labels, yet again

  1. First of all I would like to say great blog! I had a quick
    question in which I’d like to ask if you don’t mind.
    I was curious to know how you center yourself and clear your mind prior to writing.
    I’ve had a hard time clearing my mind in getting my ideas out. I truly do enjoy writing however it just seems like the first 10 to 15 minutes are wasted simply just trying to figure out how to begin. Any ideas or hints? Kudos!