Monday, January 28, 2013

The Diagnosis, Part One

This is the first in a series of posts related to Owen's diagnosis.

Although Owen’s diagnosis on that fateful day in May simply confirmed fears that I already felt were pretty well-founded, I was fairly shocked at just where the consulting physicians believed that Owen fell along the autism spectrum.

For the uninitiated among us, at the time of Owen’s diagnosis, there were five disorders that were classified as being on the spectrum:
·         Classic autism
·         Asperger syndrome (which has since been re-classified; Asperger’s is no longer considered its own disorder, but has rather been lumped into the more general “autism spectrum disorder” classification)
·         Childhood disintegrative disorder
·         Rett’s syndrome
·         Pervasive developmental disorder not otherwise specified (PDD-NOS)

If I had been forced to guess, I would have lumped Owen into the PDD-NOS group. Although he definitely had some obvious delays, I didn’t think his social issues were as profound as they typically are in children with classic autism or Asperger’s (or what I thought at the time was "typical" of either of those disorders; I now know that every case is wildly different from every other case).  Rett’s syndrome is almost exclusively seen in girls, and Owen did not have the significant physical issues that go along with Rett’s in any case.  He also hadn’t experienced regression, the hallmark of childhood disintegrative disorder.  Children with that particular disorder typically develop normally for the first few years, and then they lose the language, social, and motor skills (among others) that they had previously developed.  That left PDD-NOS. Generally, children with PDD-NOS have developmental delays and issues with communication and play, and while they do have some difficulty in their interactions with others, they’re generally too social to consider to be autistic.

Gasp!  I said the word “autistic.”  Embracing my own ability to become easily distracted from the issue at hand and commencing mini-rant in 3…2…1…

I’ve learned a number of things during the eight months that we’ve all been trying to adjust to our “new normal.”  Some parents blame vaccines (I don’t).  Some parents sing the praises of special diets (we tried it; it’s not for us).  Some parents are offended by use of the word “autistic,” since it puts a label on the child.  Instead of saying that the child “is autistic,” these parents prefer to say that the child “has autism.”  Is autistic.  Has autism.  Sounds about the same to me.  I’m far too concerned with helping Owen understand the world (and helping the world understand him) to get too caught up in the description.  You know what offends me?  Ignorance, not semantics.  Say it either way you want - doesn’t bother me.  Truth be told, I’d say that “Owen is autistic” is probably more accurate than “Owen has autism,” at least as far as our personal situation is concerned.  A person has a cold.  A person has a stomachache.  They are momentary afflictions, meant to be addressed and moved past.  Owen is autistic.  It’s not something to be ashamed of, it’s not something to treat willy-nilly, and it’s not something he’ll magically appear cured of one day (barring a touch from God).  It’s something that he, we, and everyone who loves him will have to deal with and address every single day for the rest of his life, and that’s OK.  It’s not wrong.  It’s not unnatural.  It just is.

Rant completed…where was I?

When the developmental physician handed me the paperwork that indicated that he and his colleagues were diagnosing Owen with classic autism, I was floored.  Not because I wasn’t expecting a spectrum diagnosis.  I was fully prepared for that.  I just wasn’t prepared for that one.

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