What’s The Big Deal About The Asperger’s Disorder Elimination?

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a  mom who blogs over at AutismWonderland.

Earlier this week the American Psychiatric Association (APA) announced the approved revisions for the May 2013 edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Among the revisions – the “Asperger’s Disorder” diagnosis will fall under “Autism Spectrum Disorder.” According to the Huffington Post, the purpose of the change is to “simplify [the] diagnosis.”

I remember when Norrin was first diagnosed with autism, the doctor told us to think of autism as an umbrella. And under the umbrella was: autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger’s disorder. During that first year of Norrin’s diagnosis, my husband (who was in denial) would tell people that Norrin had PDD-NOS. And I would think to myself – isn’t it all the same thing? But for my husband, any other name sounded better than autism.

At times I feel as if there is this need for distinction: high functioning, low functioning etc. Because for new parents, a straight up autism diagnosis is scary. And I think for some, Asperger’s is easier to accept. For parents who already have an Asperger’s diagnosis for their child, to have that taken away, for there to be no distinction within the DSM-5 – could mean having to go through the acceptance process all over again.

Or the change could mean nothing at all.

I honestly don’t know what it will mean to parents, since I don’t have a kid whose diagnosis may change. So, I thought I’d ask a few mom of kids with Asperger’s for their thoughts:

When I first heard about the proposed DSM changes, I was worried, of course, about what it might mean for my [12-year-old] son. He identifies very strongly as an “Aspie” and I could just picture that conversation. (“You don’t have Asperger’s anymore.” “YES I DO.”) I think the goal here with the DSM revisions was to say “autism is autism” and that makes sense to me. Asperger’s will stick around as a descriptor (or, in my son’s case, a self-identifier), but clinically speaking, it will simply be high-functioning autism. The main concern seems to be that some kids may currently be labeled with Asperger’s but do not meet the criteria for the autism label, and what happens to them? I don’t know the answer to that. ~ Mir

Looking at the new criteria, Zach [11 years old] still meets the threshold for an autism diagnosis. Honestly, I only think he was diagnosed as Asperger’s originally because he’s so verbal. I don’t necessarily agree with that because he has a younger brother who is also verbal, but officially diagnosed as LFA [Low Functioning Autism]. On any given day, the boys could trade the diagnoses the doctors have put on paper for them, so in our house, it’s all just autism. ~ Amanda

My daughter, who is about to turn eight, understands she has Asperger’s, and is quite open about it. She has been around kids with severe forms of autism and so for her the label of autism doesn’t resonate. I think she’s too young to understand the idea of the spectrum and the reasons for the DSM changes, so for now I will continue to refer to her as having Aspergers. My son only just turned four so time will tell regarding how this change impacts him, if at all. Based on the new criteria I don’t think he would have any problem getting an autism diagnosis. My Aspie daughter might not be diagnosed under the new criteria. ~ Sharon

My own personal feeling is this – so long as my child gets the appropriate educational services he needs, I don’t care about the diagnostic label.

The APA stated that the change will not impact special education services. But only time will tell. In a perfect world, if a child needs extra support – they should simply get it, regardless of the diagnosis. And I think that’s the bigger conversation that we as parents need to focus on.

What are your thoughts on the change? Are you worried? Do you think it will impact special education services? Or do you think “Autism is Autism?”

 

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  1. by Miz Kp

    On December 7, 2012 at 7:45 am

    The new changes do not affect Angel. I am glad for that because it is one less thing that I have to worry about. I am concerned for other children and I hope that no child loses the services that they need. I also hope the DOE does not use this as a reason to screw families over. Sorry living in NYC makes me jaded at times.

  2. by Laurita

    On December 7, 2012 at 10:41 pm

    Lisa, I ALWAYS appreciate you educating people like me about things I’m trying to understand and can’t completely grasp. It’s impossible for me, after 26 years, to imagine a doctor coming up to me and telling me that the diagnostic criteria has been changed, and *POOF* I don’t have spina bifida.

    I can totally relate to your concern, though, about whether or not all children with some form of autism will continue to get the support they need. I sincerely hope they do!

  3. by Defending Jenny McCarthy | To The Max

    On January 8, 2014 at 8:56 am

    [...] every individual. And an autism misdiagnosis is not out of the realm of possibility for anyone- especially since the criteria has recently changed. Back in November I wrote This Is My Son. This is Autism describing what autism looks like for us. [...]