With them it’s always the dollars. Always the fuckin’ dollars.” Nicky Santoro, Casino 1995.
The Case Against Asperger’s
by Lucy Berrington / Psychology Today, Oct 21, 2012
Lucy Berrington is a Massachusetts writer and the parent of a teen with Asperger syndrome. She serves on the Board of Directors of the Asperger’s Association of New England.
It seems likelier than not that the Asperger’s diagnosis will disappear from the Diagnostic and Statistical Manual of Mental Disorders (DSM). Seven months from now, the DSM-5 will be with us, and Asperger syndrome technically won’t. Actually, it’s hard to be sure about the date, since sticking to the publication timeline (link is external) has not proven a strength of the American Psychiatric Association. (May we diagnose an institutionalized executive function disorder? Or “abulia”, the neurological term for loss of drive?)
Outside the APA, the case against Asperger’s as a diagnosis has intriguingly crossed party lines. Many who advocate for the acceptance of autism have reached the same conclusion as some of the pro-cure factions: Asperger’s must go! This is a startling phenomenon the like of which we might never see again. And their reasons, needless to say, are exactly opposite. I’m with the Asperger’s must stay! party, and later I’ll explain why. But here’s the case against, as I understand it — and please weigh in if I miss your particular Asperger’s peeve or if you disagree with my ratings. Inevitably, some of these arguments overlap.
The consensus: the DSM-IV approach to autism isn’t working well (link is external). Clinicians have complained (and research (link is external) has shown) that differences between the autistic subtypes are largely subjective. Which means your diagnosis might be influenced by what your clinician had for breakfast or the Korean boy band track the kids insisted on in car pool. To accurately diagnose the various forms of autism would require a Sorting Hat of the Hogwarts type, with all its unfathomable wisdom, announcing of each client, “Asperger’s,” or “PDD-NOS,” or “Autistic Disorder!,” and never to be second-guessed.
Instead, the APA has applied its own special magic and conjured up the supposedly all-embracing Autism Spectrum Disorder (link is external).
Whether the new criteria improve on the old ones is beyond the scope of this blog post (though here’s (link is external) an excellent evaluation). Nevertheless, the old ones were problematic enough that the APA had a strong case for making revisions. Strangely, though, it wasn’t strong enough for the APA, and several members of the autism committees threw in additional, more objectionable rationalizations, which I’ll get to later. The result? Much clashing of wands and broomsticks, and suspicions that perhaps the motives of the APA were more sinister than at first appeared. I give this argument 3/5. Would have been 4/5 if the APA had handled it more persuasively.
AGAINST: Asperger’s is separatist and elitist, the label of choice for those distancing themselves from classic autism. In the same vein, mainstream media and pop culture have bestowed on Asperger’s syndrome benign, even flattering stereotypes (quirky geniuses and the like), promoting the acceptance of a small percentage of autistic people while most are still largely excluded.
Like when the coolest kid pals up with a token nerd (the cute one) in a smug display of reasonableness, but continues to persecute the others. This is the argument (link is external) of many self-advocates associated with the neurodiversity movement. It’s a real issue, but does it justify abolishing Asperger’s?
Maybe the recent cultural prominence of Asperger’s promotes a more mature lay understanding of autism and of developmental conditions, helping to shatter the myth that autism is disastrous. I accept that it’s a fine line, and fine lines are not easily drawn in our impulsive, melodramatic 24/7 news cycle. But still. Roy Richard Grinker (link is external), anthropologist and autism researcher, has said the Asperger’s diagnosis “broadened the public understanding of autism as a spectrum,” and “helped previously undiagnosed adults to understand their years of feeling unconnected to others, but without bestowing what was considered the stigma of autism.” He concluded, though, that Asperger’s has done its work, and the stigma of autism is no longer severe enough to justify retaining the Asperger’s diagnosis. I know self-advocates who agree with his conclusion but nevertheless protest his idea that the stigma around autism has seriously diminished. Implicitly, his initial argument remains valid. I appreciate the inclusionary instinct, though, so give this 3.5/5.
AGAINST: The separate Asperger’s category suggests it is a “mild” form of autism, and its challenges mild also.
This “mildness” (link is external) is a false Asperger stereotype. It minimizes the challenges faced by Aspergerians and their need for support and accommodations. And it reinforces the false dichotomy of “high/low functioning” autism. Autism is a complex, multi-dimensional condition. Its highly variable manifestations don’t necessarily correspond in a codifiable way with degrees of severity or need. Many Aspergerians face profound struggles (link is external) in multiple areas of life, including relationships, education, employment, housing and health.
Again, a real issue – but the abolition of the label doesn’t necessarily resolve it, and could introduce equivalent problems. 2.5/5.
AGAINST: Asperger’s isn’t autism anyway.
This tends to come from pro-cure advocates representing classically autistic people. Their argument: anyone who can effectively self-advocate is not disabled enough to be autistic. Here’s autism campaigner Lenny Schafer (link is external) leading the charge against Aspergerians: “let us hope that the upcoming DSM-V gets clearer about defining autism only as a disability — and kicks the high functioning ND [neurodiversity] autism squatters onto the personality disorder spectrum where they belong.” WOW! Nasty! – Asperger individuals just can’t “get no respect” Everyone hates us…
My Aspergerian friend Phil, a well-connected advocate, describes the attempt to disenfranchise those with “lesser” forms of autism as “a sort of perversion of Groucho Marx’s famous quip that he wouldn’t ever belong to a country club that would have him as a member. The perversion is that ‘anybody who can effectively self-advocate is ipso facto not disabled enough to be considered truly autistic’ and should be voted off the island, through reclassification if by no other means.”
The case that Asperger’s isn’t autism seems to be based on misunderstandings of autism (link is external), the perception that neurodiversity-based arguments do not address some of the challenges associated with “classic” autism, and (well-grounded) fears around insufficient resources. I score this at 0.5/5. That half point represents my sympathy around the general struggle for services.
Politics aside (or, at least, not exactly central), there’s a case being made that Asperger syndrome sometimes isn’t autism, or autism as we must come to understand it. A study analyzing (link is external) the impact of the new criteria suggests 10% of the children who’d receive a diagnosis under DSM-IV requirements would not qualify under DSM-5. The new criteria seem likely to exclude those whose language struggles are largely pragmatic.
Which brings us to….
AGAINST: The Asperger’s diagnosis has been too liberally applied, pathologizing social awkwardness and straining educational budgets.
Note that the “discussions” about “who has what” are substantially social-economic-political arguments about the HIERARCHY of status among “defective people”.
We may have no place on the “Neurotypical Social Pyramid” but we get our own little pyramid based on “classes of defective people” – kind of like being seated at the Children’s Table at Thanksgiving Dinner; only we never get to “grow up” and move to the Big People’s Table.
The Diagnosis Formerly Known as Asperger’s
In the months after my young son was identified as having Asperger syndrome (link is external), I wondered whether he would outgrow his diagnosis. I never imagined that his diagnosis would outgrow him. Still, that’s happening with changes to the diagnostic criteria and terminology relating to autism. This is far more than a medical technicality. (It isn’t medical at all: it’s social) For autistic people and their allies, the issue is packed with implications for identity, community, and access to education and health services and legal protections. Raging opinion has long since burst the banks of the autism blogosphere and spilled into the mainstream media.
When my son was born in 1996, the Asperger’s diagnosis was only two years old. Asperger’s Disorder, as it is known in the inherently pathologizing terminology of the APA, had been formally introduced (link is external) to researchers and clinicians in DSM-IV (link is external), published in 1994. This followed years of demands from autistic people and their allies for due recognition and support. Nevertheless, the principle of the new umbrella autism diagnosis makes some sense. Plenty of Aspergerians have already put themselves into the autism category, resisting the Asperger’s label for admirable reasons that I’ll look at in my next post. But at the Asperger’s Association of New England (AANE (link is external)), based in Watertown MA, where I serve on the Board of Directors, we witness the value of the Asperger’s diagnosis to many — and I’ll get to their reasons too.
The arguments over the Asperger’s label don’t align neatly with the usual autism factions. Some who reject it (link is external) are motivated by inclusion and solidarity. Others (link is external) appear to do so for reasons of exclusion and hierarchy. Needless to say, these groups aren’t snuggly bedfellows. Autism politics has been a treacherous business since long before the APA launched its latest debacle. Planning this blog, I’m thinking about the importance of not unfairly judging people whose experiences and perspectives I don’t share — and I’m uncomfortably aware that this decision could itself look like an unfair judgment on others.
What am I doing here, anyway? I’m the non-autistic parent of an Aspergerian-slash-autistic teen son and a typically developing tween. My friends include autistic adults who provide generous consultation services on all matters autistic (actually, on all matters) and straightforward (read: polite yet merciless) feedback on my rough drafts. They’ll make frequent appearances here. I’m a consumer of online coverage by self-advocates who engage with and tolerate me in varying degrees. I chair a fledgling Advocacy Committee at the AANE and edit its recently re-launched blog, AspBlogosphere (link is external). My involvement with the AANE inevitably influences my perspective, although my posts here do not represent its positions. And I’m part of a committee responsible for a pioneering Standardized Patient program at Tufts University School of Medicine (link is external), Boston, in which autistic people educate medical students about autism and the barriers to health care they encounter. My professional background is in journalism, I’m a candidate for a Masters of Science at Tufts, and I welcome good faith feedback and criticism. I’ll be reporting and remarking on issues, events and research affecting the Asperger’s community — families, friends, clinicians, and (primarily) people with Asperger’s and related profiles, regardless of which diagnostic label works for them. That which we call a rose by any other name would smell as sweet.
I’m reminded of the traditional chant on the death of a monarch, which acknowledges the immediate transfer of sovereignty to the heir. “The king is dead! Long live the king!”
“Asperger’s is dead! Long live Asperger’s!”
The fine Aspergerian mind will always be with us. As for the label, I’ve a feeling it won’t easily be wrested from those who find it helpful. I envision my son as an old man in 2070, croakily confiding that he has Asperger’s — or autism. And I’ll guess that whichever terminology he favors (and if we’ve done our jobs right) whoever’s listening will have a pretty decent sense of what he means.