Thursday, July 10, 2014

Processing a Processing Disorder

My pastor recently sent me an interesting article questioning whether Sensory Processing Disorders are a true medical diagnosis. It's a condition I have talked about before, and one that my husband and I are seeing in our middle daughter as well. The article is worth reading, even if it raises a point that ruffles some feathers, including mine. Sensory Processing Disorders are not widely recognized, and I have a friend who had to fight for a while to get her child diagnosed. Even then, insurance may do little or nothing to treat its symptoms, and there is no cure. 

Thankfully our doctor does recognize it and has worked with us on free or very inexpensive ways to cope with it--Meg "snuggles" with a medicine ball, I made a "sensory jar" she can stare at to calm herself down, I've learned deep tissue compressions, etc.--and we haven't needed to try to find therapy which is, indeed, not covered by insurance.  Gratefully, Meg's Kindergarten teacher also recognizes Sensory Processing Disorders and worked hard to make sure Meg transitioned well into full-time schooling. Meg was fine at school, but her teacher wanted to be sure we were coping at home, too. And she saved us. She really did. 

So, obviously, I disagreed with the title of the article. I believe Sensory Processing Disorders are real. And totally a medical condition. 

Right? 

Still, I found this interesting: 
In 2012, the American Academy of Pediatrics claimed it is unclear whether children with sensory problems have a distinct disorder or whether their challenges are linked with other disorders such as autism, ADHD, and anxiety. It urged doctors to caution parents that the effectiveness of sensory integration treatments are "limited and inconclusive."

While I do think it's apparent that I have something more than just normal reactions to things, and I can see that Meggie does too, I'm not prepared to say it's not linked to autism or ADHD.  I believe autism is a spectrum--ranging from ADD to savantism--and that spectrum includes a range of functioning.  It's all sensory processing difficulties--an inability to concentrate on any given task, an inability to control oneself to sit still, an inability to function in social settings, an inability to express oneself in any way other than playing the piano.  In fact, when I describe it to other people, I just say, "It's on the autism spectrum."  And Meg isn't as far down the spectrum as Asperger's, but she is closer to that than just ADHD or ADD.  So am I, though I'm also coming to terms with the fact that I might have ADD.  So do I have an extreme case of ADD manifested in a constant flight or fright state?  Or does a place on the spectrum closer to autism mean I have everything to the left as well, including the ADD?  And someone with Asperger's would have the ADD and the flight/fright state AND trouble in social settings/gathering social cues?  Hence the problem.


What I do know is that the therapies we've tried DO generally work, and it IS a matter of finding what works for yourself or your child.  But, boy oh boy, it's easy to be overstimulated in this fast-paced world.  I can't imagine trying to diagnose this or get insurance companies to determine what or how much to pay for it.  It's rather like diagnosing post-traumatic stress disorder.  Each of us is capable of handling different stressors . . . and we all have bad days.  So is someone with PTSD weak or depressed or just dramatic?  Or is it real and does it deserve disability payments and therapy?  How do you measure that degree and then assign a dollar value to treating it or compensating for it?

I understand why the psychiatric establishment isn't ready to rewrite the DSM just yet.  But I hope they're investing the time and the research dollars to explore it and helping families who haven't yet found what it takes to cope.



2 comments:

Anonymous said...

I've been watching Parenthood on Netflix and one of the characters on the show is a middle school kid with Asperger's. Joel was sitting with me, with his back to the tv, playing a game on his DS (seemingly not paying attention to the show). Out of the blue, he said, "Mom, do I have Asperger's?"

I said, "No. I don't think so. But you are a little quirky, in an awesome way, and have some of the good qualities a kid with Asperger's might have - like being really smart and having a great memory for unusual facts."

I thought it was so interesting that he saw himself somewhere on that spectrum that makes each kid (and all of us, really) challenging and unique. And, so far (thank God!) he's cool with it.

RMMcDowell said...

I love that, Amy. Thanks for sharing it. I think more of us are somewhere on that spectrum than we might initially think, and I don't think that's a bad thing. I thing Meg is AWESOME exactly as she is. I do wish she had fewer freak out moments, because they cause me to flair up and freak out too, but the quirky and interesting parts of her are so cool.