My daughter is HFA or “Austism, High Functioning” according to the physicians at a well-respected Autism research facility. She met one more criteria for Autism that Aspergers.

We were informed that, as of 2013, Aspergers will not likely be an available diagnosis in the new DMS anyway (nor will Pervasive Developmental Disorders). It will all just fall on The Autism Spectrum and be considered an Autism Spectrum Disorder.

Great, right? All under one umbrella might mean greater likelihood of insurance coverage, right? Access to services? I hoped so. Our insurance (Yay Kaiser!) covers all sorts of cool services for our daughter, including diagnostics and specialists. But for most insurance? Nope. Autism is a big taboo. Getting a child even tested (developmental pediatricians, battery of tests) is prohibitively expensive for many parents and is in the realm of “experimental” for insurance companies – I am looking at you Blue Cross.

This article in the New York Time’s has me wondering.

“The proposed changes would put an end to the autism epidemic,” said Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine and an author of the new analysis."
Dr. Volkmar said that although the proposed diagnosis would be for disorders on a spectrum and implies a broader net, it focuses tightly on “classically autistic” children on the more severe end of the scale. “The major impact here is on the more cognitively  able,” he said.

Huh. Okay. That leaves a gaping hole for children like my daughter.

The likelihood of being left out under the new definition depended on the original diagnosis: About a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three quarters of those with Asperger’s would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not.

Here is the lowdown:

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. Under the current criteria a person can qualify for the diagnosis by exhibiting six or more of 12 behaviors; under the proposed definition, the person would have to exhibit three deficits in social interaction and communication and at least two repetitive behaviors — a much narrower menu.

My daughter presents as a completely classic HFA Female. Which is obviously different than a classic HFA Male. The deficits are there in social interaction although marked improvement has been shown with intervention. Let me tell you a little secret about HFA girls … they are less likely to line up their toys by color and shape, less likely to key in on a topic obsessively, less likely to stim in ways that their HFA male peers will. They are more likely to mask their symptoms, mimic their peers. But mimic does not mean neuro-traditional.

It infuriates me. I hear parental frustration about how to best help their child when other parents, teachers and pediatricians see this:

1. Boys go gonzo but THAT boy is flapping his hands, spinning in circles, refuses eye contact and obsessed with trains and can’t talk about anything else so he is extra-gonzo and has Autism. He meets criteria. Case closed.

2. Girls are social creatures, but THAT girl is socially withdrawn, refuse eye contact, get ulcers, develops obsessions over rules and expectations, gets caught in an emotional “loop” that she can’t break through without intervention, takes her peers literally and does not understand their social motivations … she is just shy. Or has anxiety. But she is not Autistic. Autism looks like a spinning, train-obsessed little boy. Right?

And to all the mamas and papas out there who experience the truly amazing autistic meltdown on a regular basis – hugs. I know. It is film-worthy (check YouTube an you will realize you are not alone and then get ticked that parents are putting their autistic children’s meltdowns on YouTube). That seems to be a constant, regardless of gender.

We are all different. I would dare say that none of us is truly neuro-traditional. But most of us function in a world that we made and contribute to. We mostly understand it. We work within its rules an norms and attempt to function the best we can. The one way in that these kids are the same – regardless of level of diagnosis – is that they frequently feel like they are just visiting our world. I don’t know if the new DMS is going leave many feeling like outsiders, without help to translate and understand their world or if it will bring about a tighter diangostic process to help those who are far on spectrum recieve the help they need.

It could very well mean that we are entering an era of a new definition of neuro-typical.

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Note: the “d” on my laptop is wonky and does not seem to want to work well. Excuse my an when an and is appropriate!