Thursday, April 11, 2013

The Diagnosis Dilemma

UPDATE: since this post, his diagnosis has changed from PDD-Nos to Autism from his developmental pediatrician but we are still waiting for the wraparound evaluation.

     Something happened at our year meeting with Early Intervention this past week that still has my head spinning. Our case worker brought out the supervisor for the Intermediate Unit since Xander will be turning three this summer and moving to the I.U. and that means pre-school.
     We are no stranger to evaluations anymore and while they still make me anxious at times, this one I thought would be a simple review and update of paperwork. But it turns out, this one is one that's raised a few weird points of interest.
     For the first days of researching what exactly PDD-Nos was, most of what we found was confusing and conflicting. I've since tried to make the best sense of a rather confusing, poorly described style. For those you who don't know exact what Nos is, don't bother googling it that will only get you running in circles. Here's the way I've come to understand it.

There's PDD, Pervasive Developmental Disorders. Under that umbrella are Classic Autism, Asperger's Syndrome and Not Otherwise Specified. Or as I like to refer to it as "Column A," "Column B" and "Everyone Else." Nos is sometimes referred to Atypical Autism because they give this diagnosis to people who are either very young, have some but not all characteristics of Column A or B, or they are not able to communicate well enough to get a good idea of their areas of delay. (Please note that I'm nothing more than a parent in this systems and this is just my understanding of the why things are worked out. I do not claim this is 100% correct, but its the best of my understanding after much research.)

     For some reason, that description isn't something easy to find online. Its all put in much more confusing terms and your head is spinning by the end. The biggest question I had was whether or not it was Autism. And I know I'm not alone in this. In the year or so that I've been surfing autism support facebook groups and forums, its a reoccurring question. Then someone comments in a belittling tone, asking if it really matters what they call it, that the diagnosis doesn't change who the kid is. These comments make my blood boil now. In the beginning they made me feel like sh*t, like I was a bad mom for want a clear idea of what it was and was not. I didn't love my son less, I just needed clarity. Now I get mad because more than likely this is a parent with a clear class of Column A or B and they have never had to worried how to define what's going  with their kid. I know we all have hunted for accounts of kids like our child and tried to compare to get a clearer picture but with a diagnosis that is basically the catch all of Autism, that's nearly impossible to do. Questioning Nos status of being Autism or not doesn't make you a bad parent or love your kid less and people need to stop acting like that's the case. We are all concerned about our kids, we want to know what the future hold and even to be told what's wrong can't be "specified" is upsetting.

    So back to my reason for even bringing this up. During the discussion we had about pre-school and discussing the increase in his behaviors and traits over the last year, things we are now noticing with a more educated eye, they feel he would thrill in a specific autism based classroom. There's one catch, they don't consider Nos, Autism. This seems like a ridiculous cause of nitpicking over details. After the meeting, Xander's BSC (Behavioral Specialist Consultant) stuck around to discuss this because she's the only one that goes with us to the psychologist who can give or change his diagnosis. She feels that its not only in his best interest but also a better fit now to change him to Column A and I don't disagree but for there to even be a problem with Nos not being "good enough" seems ridiculous. Nos parents don't go through anything less difficult than Column A parents, and the children have a lot of the same challenges, but to suggest a change simply for services sake makes me question the latest 1 out 55 percentages of children with autism. I know funding and resources come into play and I'm not saying every kid should be put into the class at the parents request, but a case by case bases regardless of formal label makes sense, over cutting a child's chances for increased help because they happen to not have fine motor issues or might not have issues with eye contact as bad as most seems cruel.

     We will see what the psychologist has to say and what effects the new classifications for ASD in the latest evaluation criteria change coming this May might have on our case. I was originally worried that getting rid of Nos and Asperger's would be a huge problem for us, but now I'm thrilled they seem to be doing away with a flawed system and creating a more even playing field.


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