Physicians involved with developing the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) are attempting to change the Diagnostic Criteria for Autism Spectrum Disorder (ASD). They are making efforts to more accurately diagnose individuals with Autism and avoid over diagnosis, which many people, most of whom I'd be willing to wager are people without kids on the Spectrum, are very concerned about. Don't get me wrong, it's certainly a concern, but I'd rather there be kids out there getting some one on one help with their issues, than simply being told they're "just fine" when in actuality, they aren't. This attitude of "over-diagnosis" is certainly contributing to the stigma surrounding Autism. And I want us all to start Thinking Differently About Autism.
The DSM-5's new criteria would do away with the diagnosis of PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified)... Abby's diagnosis. This could be good, but it kind of freaks me out. Why? It is a vague and confusing label. "So does my kid have Autism then, because her label doesn't say she does?" Losing that diagnosis freaks me out, because Abby went to three pediatricians who looked at only a few of the typically "Autistic" symptoms, disregarding everything I'd just told them, which were typical symptoms of people with PDD-NOS, and then repeatedly told me she was "fine". Well she wasn't.
Getting the PDD-NOS diagnosis enabled us to not only get her help from an outside source, but for me and my husband to find the information we needed to focus on parenting her in the ways she needed us to. We started reading books about Autism, instead of Milestone books for typical kids that just confused us. When I think of all the times we put Abby in time-out for trying to "communicate" with us in her limited, autistic way... it breaks my heart. How many times I disciplined her for displaying typically "autistic" behavior? Behavior that was "normal" for her and that she didn't know was "wrong". I should have just followed my instincts, but I was hoping my instincts were wrong.
Here is About.com's definition for PDD-NOS:
In essence, it's a diagnosis that means
"on the Autism spectrum, but not falling within any of the
existing specific categories of Autism."
To explain more fully, there are five disorders that fall under the category of PDDs. These include Autism, Asperger syndrome, Rett syndrome, Fragile X syndrome, and PDD-NOS. Austism, Asperger syndrome, Rett syndrome and Fragile X are all specifically described in the DSM-IV... the manual that practitioners use (barely) to diagnose neurological disorders.
Many children have some symptoms of on PDD and some symptoms of another, but not enough of any one of the four specific disorders to receive a diagnosis. Thus, they DO have a PDD-- but they DO NOT have Rett syndrome, Fragile X, Asperger syndrome, or autism. As a result, they receive the catch-all diagnosis of PDD-NOS.
So does that clear it up for you? Because it barely clears it up for me.
"So my kid doesn't have Autism?"
The hope-filled question that I've asked her teachers, therapists and social workers before.
"Oh, no. She has Autism." they assure me.
So maybe getting rid of this vague label is good. But then my question is... what's her new label and does she need one at all? Why are we so anxious to put a label on our kids? Why her? Why me? Why us? WTF am I supposed to do with this "new" information?
We need the label to tell insurance providers, pediatricians, Abby's typical friends who are learning how to communicate with her, ourselves to remind us that we have to "Think differently" about the way we raise her, anyone who will listen and learn about this disease that affects 1 in 100 kids, and for the people who stare and wonder "What is wrong with that kid?" ("She has Autism. What's wrong with YOUR kid?")
Other than that, I could give a shit less about labels. She is Abby J and she is practically perfect just as she is.
*NOTE* Please take a moment to read the comments associated with this posting. There is some interesting conversation there that adds to this post. Thanks!