My Son Has Asperger's ... At Least Until 2013

BlogHer Original Post

My 10-year-old son chatters endlessly and laughs loudly and often and wrestles with his friends and snuggles with the dog and makes great eye contact and technically, yes, he is also autistic.

More specifically, he has Asperger's Syndrome, which is a subset of high-functioning autism typically characterized by social awkwardness and repetitive interests. I don't know if you've spent any time with any group of children, recently, but most of them are a little socially awkward and have repetitive interests... so Asperger's bears the dubious distinction of being the autism spectrum disorder most likely to go undiagnosed or to not be diagnosed until later in life. Many kids with Asperger's can "pass" for neurotypical, under the right circumstances.

Currently, Asperger's Syndrome is considered an autism spectrum disorder but is given a distinct classification in the DSM-4. Part of the reason for the separation from other autistic disorders is that -- while it's related to even the severity of autism that might leave an individual completely unable to communicate or interact with others in a meaningful way -- it presents very differently. Also, there's a set of expectations and assumptions that comes with labeling someone as autistic, whereas the Asperger's label suggests something different.

Raymond in Rain Man was autistic. Albert Einstein had Asperger's. Rather a different mental picture from one to the other, no?

You might meet my son and not realize he's an Aspie. He's charming. He's very social. And on a good day, he's happy and "normal" and life is good. On a bad day -- a day when his anxiety is running high -- he will not fit in, and he will not be pleasant. He will say rude and inappropriate things and be rigid and argumentative, and if you didn't know he was an Aspie you'd probably just think he was an unmannerly brat. So, no, he doesn't sit mute in the corner and rock or flap, but he does require special help at school, which is currently afforded to him under an IEP.

Why am I telling you all of this? It's so that you can understand where I'm coming from on this latest bit of news: The proposed changes to the DSM for version 5 -- slated to be released in 2013, although currently still in draft form -- include (among other things) a call for the elimination of the Asperger's diagnosis. Specifically:

[T]he draft sets "autism spectrum disorders" as the diagnosis that encompasses a full range of autistic brain conditions — from mild social impairment to more severe autism's lack of eye contact, repetitive behavior and poor communication — instead of differentiating between the terms autism, Asperger's or "pervasive developmental disorder" as doctors do today.

Now, someone who doesn't live life with someone on the spectrum might not understand why this is kind of a big deal. But like it or not, there is a stigma associated with the label of autism. Even though Asperger's is autism, it's not, as the colloquial saying goes, "autism autism." Asperger's has become more mainstream, and more socially acceptable. We struggled with whether or not to allow our son to be labeled, and ultimately decided that the advantages of the label outweighed the drawbacks... but we were also accepting a label that describes a specific set of symptoms and impairments which, hey, happen to match the symptoms and impairments my son experiences.

Eliminate the Asperger's label, and he's left being labeled autistic. Which can mean anything from who he truly is -- which happens to be a really bright and social person who suffers a variety of sensory sensitivities and a fair amount of anxiety relating to his inability to gauge and follow social cues -- to a person who will never speak or interact with another human intentionally. I know it's called a spectrum for a reason, but c'mon. That's like saying "Let's just do away with labels like 'babies,' 'kids,' 'adolescents' and 'adults.' We're all just humans! Why differentiate?"

We differentiate because it gives us more information. Knowledge is power. The proposed changes to the DSM may be wrapped up in rhetoric about better diagnostic criteria, but at the end of the day the lack of specificity does those with Asperger's a grave disservice by taking a well-known set of manifestations and lumping them in with a bunch of related (but very different) disorders and calling it "good enough."

As the parent of a child with Asperger's, I'm here to say it's not good enough. It's not even close.

NPR ran an episode of The Story called "What's in a Name?" that included a fascinating interview with Nomi Kaim, a young woman who was diagnosed with Asperger's a few years ago while she was in college. (Listen to the audio here.) Kaim is opposed to the removal of the Asperger's classification, and she speaks to the matter eloquently, but my favorite part was when the interviewer said, "At a personal level for you, if they take away the term Asperger's, they take away a part of your identity, right?" Here's Kaim's response:

It's actually, to be honest, it's like, it's the core of my identity. Because Asperger's affects, like, every aspect of your life. Every aspect. It's social, communicational, emotional, intellectual, because our intellects, they can be great, but they're kind of different. Um. It affects your body, your coordination, your sensory sensitivities to touch, and just everything.

Disability Scoop's Michelle Diament agrees:

Changes to the autism diagnoses were long expected to be considered in the DSM revision, and anticipation alone stirred significant debate. Many with the diagnosis of Asperger’s syndrome said the possibility of eliminating the term which is widely recognized both in popular culture and among health care and educational providers would mean losing a sense of identity.

My son has only been officially diagnosed for a few months and we have already seen a huge change in how he views himself; "This is part of my Asperger's," he'll say, realization dawning. "It's not that I'm bad or wrong, this is just part of who I am, because of that. And other people are, too." It has been tremendously empowering for him, and upon hearing Kaim's words I found myself growing a little teary. It is an identity issue.

Dana Rossenwasser writes for Hear Our Voices Magazine covers the proposed DSM changes and notes:

To explain the decision, the vice chair of the DSM stated that there isn’t enough evidence to keep Asperger’s syndrome as a separate diagnosis.

But some remained unsatisfied. Among them is the director of the Global and Regional Asperger Syndrome Partnership.

The director explained “I personally am probably going to have a very hard time calling myself autistic.”

Allison of The Forgotten Child of Autism has Asperger's and isn't beating around the bush about the issue of stigma.

The high-priests at the DSM prematurely decided to throw Asperger Syndrome in with classic autism. For those of us trying to find jobs, I think there is going to be hardship. When you say “My daughter is autistic”, people say things to you like, “Can your daughter talk?”

J.M. at AspieSaurus is ambivalent about the change:

I don't really have an opinion about this either way. I don't really see Asperger's as any less stigmatizing than autism, and I don't think that this plan would really deter anyone from seeking a diagnosis. If someone's symptoms are severe enough that the really see benefits from getting a diagnosis, they shouldn't care what that diagnosis is. And as far as government benefits go, this could possibly help more people get help from the government. Of course, they could always say that only those with more severe symptoms get benefits.

And if you want a look at how the diagnostic criteria really ought to be done -- if you're willing to experience it with no holds barred and tongue planted firmly in cheek -- well, Rachel Cohen-Rottenberg of Asperger Journey shares how she would rewrite the DSM criteria for autism. Spoiler: Expect multiple appearances of the word "awe-tistic" rather than "autistic." It's a masterpiece and I'm not even going to try to excerpt it here; just go read it.

There's no telling if the proposed changes will make it into the revision, at this point. All I know is that knowing that my kid has Asperger's has made his life more manageable for all of us, and I'm very leery of a group of "experts" wanting to take that away because they've suddenly decided it's somehow inconvenient for them.

I'll say it again: Knowledge is power. You can try to tell me that less knowledge is "better," but I'm not going to buy what you're selling. Sorry.

BlogHer Contributing Editor Mir also blogs about issues parental and otherwise at Woulda Coulda Shoulda (where she is equally likely to brag on her Aspie as on her neurotypical child), and about the joys of mindful retail therapy at Want Not.

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