Do the proposed changes in the DSMV really matter?

Wow. Sometimes I feel so out of the loop on things when it comes to the “autism community.” I recently read a rant on LeftBrain/RightBrain and in the comments you can see that these people know and obviously read each other’s blogs. That left me feeling kinna funny posting comments there.

Like an outsider.

But that’s always been an issue for me, hasn’t it? Yep! Sometimes it’s not meant that way but it is just how I perceive it. It is nothing intentional on that group’s behalf or no motives to exclude me. It just is.

But the thing that I was commenting on was about the DSM reported changes. I guess they are going to eliminate PDD/NOS and Asperger’s.


I am actually rather relieved that they are! How many times do I have to say that my son is diagnosed with “Pervasive Developmental Disorder-Not Otherwise Specified.” And then someone will inevitably ask me “What does THAT mean?” and I simply reply “Well, it’s on the spectrum of autism.”

And then I won’t have to clarify that *my* autism and *Thomas’* autism is different than Brandon’s autism. I mean, it’s ALL autism.

I’ve read that there are those with Asperger’s out there that are angry of this change because of the stigma related to “autism.” It is, after all as I posted about before, the new “retard” in today’s pejoratives. Who WOULD want to be associated with something that is likened to an insult?? I don’t blame them!

But they are not being elitist to not want this. They are being human, in my opinion.

Let’s think about this. After all, we are all spectrumites, no matter the actual diagnosis, right? HFA, LFA, Asperger’s, PDD, PDD/NOS, etc. We are ALREADY all spectrumites! So why not lend a little of the “coolness” that is associated with Asperger’s to the strictly text-book cases for those who are “autistic?”

We are not going to erase stigma by refusing to change. But because we are all spectrumites, many of us have trouble with change to begin with! This excuse of stigma is just that, for some. It’s a way of justifying the dislike for the change other than the fact that it’s an autism trait.

And lastly, for those that think they truly *are* better people than other autistics: get over yourself. You know who you are, I do not have to speak to you by name. Just own it and move on.

Why? Because none of it matters. None of it matters to the grand scheme of things WHAT labels are put upon you.

If you haven’t done so already, I invite you to read/reread the commentwritten by: daedalus2u on Left Brain/Right Brain . I’m not sure how many comments down it is, but look for it. It’s well worth the effort.


And this was my comment and it ‘bout sums it up for me:

I love what daedalus2u had to say. claps

My father heard my radio interview on BlogTalkRadio from Autism Women’s Network and he had a few critiques. One he said: ”You came across as a know-it-all and you wouldn’t let them finish their questions before answering. You didn’t listen to me. I told you: you know your stuff, you’ll be just fine. Just answer their questions. We’ve talked about this before!”

And then he started talking about my “diagnosis” versus how he raised me. He said “Your mother and I never knew what the reason was for why you did the things you did. We always said you marched to the beat of a different drummer. That’s my heatherbabes! and so on. We just knew you needed thirty minutes to walk to the bus stop and your brother needed two. Having had a diagnosis now for 13 or so years, you have not changed. You still march to the beat of a different drummer and you’re still my heatherbabes. I don’t care what they call it in a book. Your name is Heather not autism. Your two sons are named Brandon and Thomas… not autism. So let them label the kids any way they want if it gets the insurance company to pay for the services y’all need and just know that that is all there is to it. None of the labels really matter because it is NOT who you are. It may explain WHY you see things no one else around you did growing up (i.e. seeing 3D images on wallpaper, contrast/meshing of colors in leaves, tasting things when I see colors, etc.) but it does NOT define who you are as a person.”

I don’t know that I can say it any better than that.

Read more:


Amalia Starr on Twitter
Amalia Starr
Mother to an independent autistic adult son, Motivational Speaker, Author, and Founder of the Autism Independence Foundation. Book Amalia to speak, call 800-939-1046 or attend one of her conferences or training.
Amalia Starr

Amalia Starr

Mother to an independent autistic adult son, Motivational Speaker, Author, and Founder of the Autism Independence Foundation. Book Amalia to speak, call 800-939-1046 or attend one of her conferences or training.

0 thoughts on “Do the proposed changes in the DSMV really matter?

  • February 8, 2012 at 2:03 pm

    I don’t think a person should be diagnosed with an illness unless there is replicable proof of it. I don’t trust these psychiatrists creating, amending, and destroying definitions of illnesses they make up or guesstimate at when their subjective and variable decisions literally affect the entire course of people’s lives.


Leave a Reply

Your email address will not be published.