Saturday, January 21, 2012

Autistic Today. Typical Tomorrow? (or Who will benefit from the proposed changes to the autism definition?

If you have a child somewhere, anywhere on the autism spectrum, you probably read this article by now.   If you haven't, here are what I deem as "the highlights": 
The definition [of autism] is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. 
The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”
At least a million children and adults have a diagnosis of autism or a related disorder, like Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. People with Asperger’s or P.D.D.-N.O.S. endure some of the same social struggles as those with autism but do not meet the definition for the full-blown version. The proposed change would consolidate all three diagnoses under one category, autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual.

(I won't divulge my immediate reaction upon reading this article.  While in real life, I may have quite the potty mouth, I just don't write that way.) 
If the proposed changes are made, this will not impact The Boy.  He's autistic.  He'll fit the criteria today, tomorrow and quite possibly twenty years from now.  No ifs, ands or buts about it.

But it could impact many people I know.  And I know how critical services are to their families. 

What Do Services Have To Do With It?

I don't know how it works in other parts of the country/world?  But within New York City?  Diagnosis is EVERYTHING.  And even with a diagnosis, you still need to fight tooth and nail for appropriate services.  They're just not given out like candy.     

And if the criteria of diagnosis will the services.   Services like OT, PT and Speech.  And school placements in smaller classrooms or specialized school programs unfunded by the New York Department of Education.  

More importantly, how will that impact Special Education Laws?  What will become of appropriate school placement?

And when I think of my best friend's daughter who has a PDD-NOS diagnosis - a little girl who is at age level, cognitively but has speech delays and requires a smaller classroom setting. She's currently in a specialized preschool and receives OT and Speech.  If the criteria changes - will she no longer qualify for special education?  Will the DOE recommend she be placed in a typical classroom of 25 or more kids?  It's quite possible.  But it's not where she belongs.  And it's absolutely not where she will succeed.  (Not as of now anyway.)

For the last few years, I've heard about budget cuts to special education, special needs services and medicaid.  I've heard of agencies and schools shutting down and therapists moving on to other careers.  In areas like The Bronx, where services and therapists and finances are already extremely limited, what will families do to ensure their child gets the therapies they need?  Will their children have a chance?

And please don't me get started on insurance companies who will do absolutely anything not to pay for services...

As it is, The Boy has a diagnosis and my insurance still gives me the run around.  

Maybe I'm reading this article all wrong.  I mean, I'm not a doctor.  Nor am I business analyst.  I'm just a mom.  But to me, the only people who this may benefit from the diagnostic change criteria are government agencies.  

So MY Big Question is:

What exactly are they trying to nip in the bud?

If you are opposed to the change - please sign this petition.
(petition started by the Mom behind The Aspie Side of Life)   

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AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.