redefining Autism?

My husband wanted me to read this article New Definition of Autism Will Exclude Many, Study Suggests.  Little N meets the criteria for a diagnosis of Autism Spectrum Disorder (ASD), although maybe he’s not a severe as many of the experiences that we hear in the media and read on blogs and in books.  So the article has me concerned about the future of what we recognize as ASD and the practical implications that the proposed changes will have on my son’s life and the lives of children like him.

In one of Little N’s earliest evaluations I asked the therapist for a distinction between cultural norms and pathology.  What makes Little N “on the spectrum” in some clinical, pathological way rather than a kid being raised by parents who are a little outside the norm?  (For example, we didn’t have a car but one of the evaluation examples referred to the parts of a car, so of course N missed it.)  The answer was that the line is crossed into pathology when the child’s differences impeded their ability to grow, learn, engage with peers, participate at school, etc. 

I agreed to that definition and the diagnosis that followed largely because it’s actionable.  It set us up to get the early intervention program, developmental preschool, in-school supports, and insurance assistance for therapy that Little N needs to be able to manage the challenges that Autism presents.

But like I said, I still wonder about the issue of severity.  Some folks tell me that they can’t tell he has Autism at all, and I’m not sure how to interpret that.  I do know that Little N is a very different child at home (lots of eye contact, chatter, and independent mischief) than he is at school (withdrawn, clinging to adults, needs support to choose activities).  All this leads me to see Little N in a grey area of the Autism Spectrum where the scattershot of his challenges land him just enough inside the line to render a diagnosis. 

So to me, changing the definition of Autism is a source of anxiety.  Will Little N be redefined off of the spectrum, putting more distance between him (us) and the tools for his success?  That’s what seems to make the positive difference for folks on the Autism Spectrum.  Tools.  Supports. Programs.  Folks on the spectrum manifest a broad range of skills and abilities that needs some distinct tools to engage with neuro-typical folks.  This might be as simple as speech therapy and therapeutic playgroups or as intricate as highly specialized speech software for a particular design of computer.

The article doesn’t clarify why they might change the definition of Autism.  And it seems that there’s disagreement about how many people the changes would really affect.  So maybe it’s too soon to get upset?  Or maybe it’s exactly the right time to say a few things that are important to me:

• My child is different in such ways as place him on the Autism Spectrum.
• Recognizing that, as his parents, his doctor, his teachers, means that he can get the tools and support that he needs to engage with others, learn academics, eat, play etc.
• The current definition of Autism facilitated that recognition and access to services.
• The current definition of Autism provided this for my son and for millions of other children.
• The diagnosis of ASD and the supports it can point to, helps us to see our children more clearly, know them, experience life with them, and equip them to experience life on their own.

I understand that the high number of children being diagnosed with Autism (cited at 1 in 150 and even 1 in 100) has raised concern and questions.  Is it a new epidemic?  Is it the result of a too vague definition?  Has it always been this way, and unrecognized?  But these are human beings, children and families, classrooms, and communities that we’re talking about.  Not research’s numbers and abstractions.  We’re talking about real people and the challenges that they (we) really wrangle with every day.

We need more time to understand the Autism Spectrum before we can change how we define it.  Maybe there’s another approach to take.  Rather than tightening the definition to reduce the number of cases, we might define categories of criteria and severity along the spectrum as well as the tools and therapies that best support them.  Maybe we share stories of life on the spectrum and become more familiar with neuro-diversity.  Those are two thoughts off the top of my head.  I’m sure folks more embedded in the issues can come up with lots more than that.

But now my thoughts are spiraling out of control away from me.  Redefining Autism strikes me as a bold example of socially defining reality – in this case by a group of experts to then be rolled out to families like mine.  My thoughts surf other examples of socially defined reality: race, gender, sexuality, religion…etc. Not to mention the struggles we’re born into as part of these definitions: typical and atypical, majority and minority, privileged and underserved…etc.  Autism and neuro-diversity fits in here too. 

I don’t have a tidy conclusion.  This is a big issue that I don’t feel like I have any say in.  I hate that feeling.  I’m grateful for what Little N’s diagnosis has made possible for him.  I’m concerned and curious as to where the definition of Autism will go and how Autism families can participate in that discussion.  Where can my voice, and my family's experience, be heard and counted?