The Deep End

I read this study some days ago, but it’s taken me a bit to digest its implications and formulate a response. I realized as the days wore on that I’m more upset about it than I originally thought.

The American Psychiatric Association is in the process of revising what is to become the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (or the D.S.M.), the first major revision it’s undertaken in 17 years. Chief among these revisions is the new definition of autism which, though it currently encompasses five separate disorders on an “autism spectrum,” would, under the new version, be limited singularly to “autism spectrum disorder,” a diagnosis with far stricter criteria. So strict, in fact, that parents of children with ASD (Asperger’s Disorder) or PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified) diagnoses are worrying their children’s healthcare is about to fall into the deep end of uncharted waters.

It is believed that only 24% of ASD and only 16% of PDD-NOS children would qualify under the proposed modifications.  http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html

Media outlets report an autism “epidemic” in our country.  http://www.latimes.com/news/local/autism/la-me-autism-day-one-html,0,1218038.htmlstory
So many are being diagnosed each year (approximately 1% of all children in the U.S. now carry the diagnosis of some form of autism – more than 20 times the prevailing rate in the 1980’s), that the medical community is at a loss to determine whether it’s the result of better diagnostic tools, or an actual increase in the incidence of autism. The disorder was believed in the 1950’s to be psychosocial, and the result of the “refrigerator mother” syndrome.  (I have to snort here.  Just ask Noah how much affection he gets.  Makes me think I’d have had a good piece of my mind to share with the theory’s champion, Dr. Bruno Bettelheim).

The disorder is now understood to be neurobiological – thought in part to stem from a 1965 study that stumbled upon a neural connection between epilepsy and autism.  To make plain the point, epileptics don’t just, for example, have difficulty “getting along” because of their “emotionally frigid” mothers.  They don’t seize simply because they have a difficult home life.  Their brains are hardwired differently, just as the brains of autistic children are.  The neural pathways for both are infinitely more complex, resulting in behaviors that stray vastly from the neuro-typical norm.  If you’re not already convinced, consider that Noah has two cousins who are epileptics.  If two of his close relatives have neurobiological  disorders, it certainly makes a more convincing argument that Noah’s is neurobiological, as well.

Yet, soon to be on the books is a new definition of autism that could in part be due to a hold-out faction of the psychogenic theory of autism; a segment of the medical community spouting dictum that it’s not physiological (biological) in nature, and could even STILL be the result of poor parenting.

Because I am writing to encourage and exhort, not incite a holy smack-down, I will demur on what I REALLY want to say about those particular doctors.

For me, it comes down to this: now what?

Noah’s original diagnosis was Asperger’s/PDD-NOS, and a year later, was changed simply to Asperger’s.  If the modifications pass as proposed, Noah may no longer meet the criteria.  And the ICD-9 diagnostic code that’s given him occupational and behavioral therapy, that’s paid for tutoring materials, that’s afforded us an extensive neuro-psyche evaluation that’s become the core of most of his therapies –will be gone.

Narrowing the definition of autism will not make Noah un-autistic.  It will simply make us have to work harder to fill in his cognitive and behavioral gaps.  The financial support we’ve received from insurance coverage based on that diagnostic code will be gone.  We’ll be jumping head-first into the deep end.  This is, by the way, a bit like the analogy my mom used with me when I got pregnant with Noah.  “Having children is like jumping out of an airplane without a parachute,” she said.  “At a certain point, there is no control.  All you can do is your best, and then entrust them to the Lord.”

“No control.”  Oh yeah.  LOVE that.

*Snort.*

So, in the same way I had to employ faith when Noah was initially diagnosed, (“What do we do now!?”), I’m back to asking the Lord with outstretched hands for wisdom on what to do if we’re plunged head-first into the deep end.

“For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God.” (Ephesians 2:8).  Faith saves us.  It throws us the life ring.  We cannot save ourselves.  “He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand.” (Psalms 40:2).

Faith rips us from the deep end and sets our feet on solid ground.  And faith will do it again for Noah and me.

- Sarah