Tuesday, September 7, 2010

The DSM-V Asperger's/Autism Debate

Last night, I was perusing the Autism Speaks Facebook page, when I came across this post: http://www.facebook.com/autismspeaks?ref=ts#!/posted.php?id=75219157496&share_id=150715731619580&comments=1#s150715731619580. It's a link to an "In Your Own Words" blog written by a young woman with Asperger's Syndrome about why she feels Asperger's should remain a separate diagnosis from autism in the DSM-V.

I hadn't even gotten to read the blog post itself when I started reading the comments on that link. And there were many, oh yes, from parents/professionals/folks on the spectrum in varying states of outrage/agreement. But the comments that stood out to me the most were from a 16-year-old with Asperger's named Jordan. He flat-out was attacking people at certain points, and his whole overall attitude was doing a serious disservice to Aspies everywhere (you can read some of the things he wrote at the link there).

I was most disheartened by this, as you can imagine, and so I decided to write a response. It turned out to be a freaking novel (is anyone surprised?), but I both addressed Jordan and got out my feelings on the autism/Asperger's debate. This is what I wrote:

"Okay. I've sat here reading (almost) every response to this for the past half an hour, and my brain is aching. Jordan, let me direct this to you first...I know you have Asperger's Syndrome. Guess what? I do, too. But the way you have conducted yourself in this thread is giving a seriously bad name to "Aspies" everywhere. You've attacked people needlessly (telling them to "shut up"), and I find your entire attitude to be condescending and know-it-all. Maybe you didn't mean to come across that way. In fact, you probably didn't, but here's the reality. People aren't not listening to you because you have Asperger's--they're not listening to you because you're sixteen and you DON'T know everything. No one does, in fact. Heck, even I don't. I got this diagnosis at age 10, and here I am seventeen years later STILL trying to figure it all out. And even though I don't have the answers or a great, all-encompassing solution, here is one thing I do know:

We all want people to see our point of view. This is somewhat ironic because, being on the spectrum, we tend to have a difficult time seeing others' points of view. I know that when I was sixteen, all I wanted was to be heard, to be acknowledged. I see you on here, going on about how great you are, how you could have your grades up "if you wanted to" and how you plan to be a published author and this and that. There's nothing wrong with having goals or dreams, my friend. But from your comments I detected a serious amount of insecurity--like you felt you had to tell us these things over and over to "prove" that you deserve to be taken seriously. But if your arguments and the things you had to say were truly sound and well thought out, that's all you would need. No "proving" necessary.

But instead there is hostility pouring off of you in waves, and I recognize it, along with your insecurity, as I have seen in adult males on the spectrum twice your age at support group meetings I have attended. You may think that you don't need any help, but that's the surest sign that you do--and the day will come when you'll have to ask for it. I once felt the same way--I was downright ashamed to ask for help because I thought I should know how to do "these things"...and I didn't. So I suffered, and maybe I lashed out at people too, in the same way that you are. All it does in the end is cause more harm than good, and it further prevents having what you have to say be heard by the people you want to have hear it.

Anyway...back to the subject at hand. I understand both sides of the DSM-V debate. I'm currently a grad student in ABA, and I've done observation in classrooms with kids on every corner of the ASD spectrum. I used to have a fear not unlike the blog author's--of being "lumped in" and seen the way I saw those kids. But the fact is, Asperger's is a part of who I am. They can change the wording, but that doesn't mean its meaning has to be taken away. And if, in the process, it allows folks with Asperger's to receive the services they need (services I certainly never got in elementary, middle, or high school), then I can't see how it would be a bad thing.

It doesn't make us any less who we are, unless we let it. We are different--not better, not worse--just different, both from the rest of the world and from each other. But the more productive use of our energies would be to help one another, not tear each other down. All of the fighting and squabbling is a waste--a waste of time, and heart, the heart that I know we all have. A heart that beats for our spectrumite brothers and sisters, and all their loved ones.

My goal is and always will be to leave this world a better place for folks on the spectrum than it was when I got here, a goal I hope to accomplish by acting as a college coach for people with Asperger's, and by being a public speaker. I have spoken at autism conferences all across the country, as well as professional development workshops and school assemblies, and the overarching message I try to leave my audiences with is that we may be different, but we have much to offer the world. Each person on the spectrum has their own gifts and challenges, and should not be overlooked, no matter how affected or not they may be."


  1. Yes, the hostility and the insecurity can ward off even otherwise nice people.

    Thank you for your "novel"/treatise.

    I hope J reads it, and the other people who are thinking about it.

  2. Hi, Amy.

    I found your blog through your (wonderful!) guest post at FWD/Forward, and I wanted to tell you I thought this essay was really well-done.

    I hope Jordan reads it.

  3. Old post, new comment. I don't get WHY aspies look at LFA people as less than aspies or humans, they are people! What is wrong with us? Pointing at "those people" with prejudice, we aspies are autistic, typical may see us as less normal and we don't like, but we do worse.

  4. Great post. Thank you I am a graduate student complete research and your expression of current changes was very insightful. Thank you for post such a blog.