The sinking of Aspergia

Public commenting has now closed on the fifth edition of the DSM, the first new version in 18 years.  For those who don’t know, the Diagnostic and Statistical Manual of Mental Disorders, released by the APA, essentially decides 1) what diagnoses are available to mental health patients, and 2) what the diagnostic criteria are.  If you clicked my linky about BPD a couple of posts back, then you’ve seen the format.

In the DSM-IV, Asperger’s Syndrome is listed as a separate disorder from Autism, distinguished by a lack of delayed speech development.  As of the release of DSM-V,  Asperger’s will no longer exist.  Nor will the other popular diagnoses of PDD-NOS and NLD.  All of these will be lumped into a single diagnosis of “Autism Spectrum Disorder.”  In addition, the diagnostic criteria will be reorganized from three categories down to two, and expanded to include sensory issues and aversions.

Some in the autism community have been anticipating this change with attitudes ranging from nervous to Armageddon.  I personally have yet to hear anyone be really excited about it [how’s that for scientific?].  The main fear, it seems, is that those diagnosed with so-called “higher functioning” flavors of the spectrum will lose their diagnoses after the revision.  However, it appears that this fear is misplaced.  The Autistic Self Advocacy Network states, “We believe that the unification of the disparate DSM-IV autism spectrum diagnoses into a unified ASD diagnosis under DSM-5 constitutes a positive development…”  For those who prefer the smug, slick brandedness and dubious motives of Autism Speaks® (go figure, it’s up to you, that’s a topic for another day), they also profess “cautious optimism” about the changes.  Both organizations are convinced, based on research and discussion with the APA, that anyone who currently has a spectrum diagnosis should receive a diagnosis of ASD under the new system.  Of course, this still leaves the question of whether people will find it harder to receive a new ASD diagnosis than they would have to be diagnosed with Asperger’s, etc., before, but I don’t consider myself qualified to discuss the clinical validity of the changes.  Instead, I’m concerned with the meaning of the labels themselves and their effect on the discourse and thought processes surrounding spectrum disorders.

To provide some context for those less familiar with the area, the term “autism spectrum” has been widely used for a good while.  I’ve been using it here.  The label serves as a way to unify groups of people who experience the world in related but diverse ways.  At the same time, sub-categories like Asperger’s have been used to identify where on the spectrum any given person fits.  So, one web community might welcome and house people from across the spectrum, but many of them will list their diagnoses as a siggy– for a totally made-up example, “Dx’d NVLD, ADHD, Social Anxiety, Allopecia, Erectile Dysfunction.  Suspected HFA and initialismophilia.”  [Yes, those are initialisms, not acronyms.  An acronym is when you pronounce it as a word, like SARS, AIDS, and other depressing diseases.  An initialism is when you say the letters, like ATM.  Stupidity is when you say the letters and then repeat what they stand for, like “ATM machine.”]

Part of the reason that people are so concerned with specifying their diagnoses is because of the public image of “classic autism.”  Prior to Asperger’s becoming widely known– and, in fact, since then, because I don’t think most people are aware of the concept of the spectrum and understand Asperger’s status thereon– the image conjured in the average person’s mind by the word “autism” was of a young child, usually a boy, who is non-verbal, in danger of getting lost in the woods, and probably a savant of some sort.  Naturally, this isn’t a misconception, since these individuals do exist, and their (dis)abilities deserve as much attention and understanding as any others.  However, it is a narrow conception that has done immeasurable harm to those whose autism manifests in different ways.

The popularization of the Asperger’s diagnosis, along with other related labels like PDD-NOS, has brought a much wider range of experiences into the conversation.  It has allowed people like myself, who previously struggled through life feeling as though we were just somehow off-kilter and capable of being “normal” if we just tried hard enough, to find a recognizable and legitimized way of talking about our differences.  It has offered us chances at invaluable treatment and accommodation, particularly for us adults whose “higher functioning” status previously slipped under the radar, and who were then basically considered non-existent because autism was perceived as a childhood condition.  Many people have become aware that those who may appear ridiculous or uncomfortable because of their awkwardness, restricted and esoteric interests, odd mannerisms, and general seeming inability to “get it”– that these losers have legitimate reasons for their differences, and possess unique strengths, but also weaknesses that deserve support and understanding.

That’s the positive side of the label.  As with most things, there is a negative, as well, or a couple of them.  First, there is the danger of the Asperger’s label becoming stereotyped, and thus either dismissed as harmless fun or pejorated.  To see how this works, look to what certain aspects of queer culture have experienced, with mass media’s obsession over the idea of effeminate male interior designers, hairdressers and fashion experts who call everybody “honey” and swoon exaggeratedly over anything that looks like an underwear model.  And the consistent portrayal of gay women as gritty, street-smart, hip and promiscuous.  You might think the proliferation of queer television stars and protagonists would foster acceptance and diversity.  In reality, these treatments single out an aspect of a community by which the average television viewer is not threatened (or by which, perhaps, they are aroused) and thus not only marginalize other individuals but make a laughing-stock of the same exaggerated stereotype they create.  These unfortunate victims of entertainment whoredom are the “friendly niggers” of the digital age.  We don’t hate them, but it’s safe to laugh at them because “some of my best friends are gay,” and we can feel comfortable with our self-perpetuating assumptions that, for example, same-sex attraction is purely sexual and therefore relatively indiscriminate, which allows us to evade the more disconcerting idea that queer people might actually be just like us.  [I don’t really know why I’m saying “we” here.  That doesn’t even make any sense because I’m, roughly speaking, on the other side of the equation.  I suppose it just sounds less accusatory phrased this way.  Whatevs.]

Anyhow, returning from that digression, Asperger’s has already begun to suffer similar media treatment.  A great example is the character Sugar from Glee: basically a spoiled brat who waltzes into the show announcing that she has “self-diagnosed Asperger’s” and can therefore say whatever bitchy things she wants.  If you know Glee, you might argue that this is just one comic character among a cast of equally exaggerated stereotypes.  If you know me, you also know that I’m the first to laugh at my own foibles.  What makes this characterization so damaging, though, is that people on the spectrum are not, to my knowledge, widely represented in a large number of more sympathetic roles elsewhere: we are a novelty, and the first few portrayals of us will be highly influential in determining how we are viewed by the population at large.  The addition of the “self-diagnosed” jab doesn’t help matters either.  The testing required to obtain an official spectrum diagnosis is difficult and time-consuming to obtain, particularly for adults, because the emphasis by most testing centres is on diagnosing children and working with them at an early age; therefore, many who legitimately deserve the diagnosis qualify as “self-diagnosed” with support from family and friends.  Unlike with many psych conditions, the symptoms and experience of autism are distinctive enough that self-diagnosis is far from ludicrous.  Ridiculing this fact marginalizes those who haven’t made it through the testing system yet or prefer not to go through the process.  I’m disappointed to see such a shallow, prejudiced portrayal from a series that offers one of the most nuanced, sympathetic representations I’ve seen of queer characters.  I don’t believe that any producers would be so crass as to represent other conditions like “classic” autism, schizophrenia, blindness, brain damage, or clinical depression in a similar manner, because these are “serious” disabilities and the viewing audience would undoubtedly take offense.  But because of the distinct “Asperger’s” label, it’s somehow okay to minimize and parody genuine neurological differences, because it’s taken as just another “fad” diagnosis like hypoglycemia and fibromyalgia.  By including Asperger’s in an autism spectrum diagnosis, perhaps we can alter this perception and garner more respect.

The other problem I see with the Asperger’s designation is its effects on discourse within the spectrum community.  Many with a simple autism diagnosis feel that differentiating a portion of the spectrum as definitively “higher-functioning” imposes an artificial and unscientific hierarchy, in which certain parts of the spectrum are encouraged to look down on others.  I believe this works in both directions: those with the most severe difficulties dismiss those with an Asperger’s diagnosis as not really disabled– a judgment with which I disagree emphatically, since only about 20% of those labeled as Aspies are ever able to function at full capacity, meaning they are able to obtain education appropriate to their intellectual abilities and work according to their qualifications.  Aspies are also thought to feel themselves superior to other autists or, at the least, to feel a disconnect with the rest of the spectrum and confine themselves to interacting with the similarly abled.  I don’t think that these generalizations hold true, as I know too many good-hearted people from all areas of the spectrum whose attitudes are inclusive and non-judgmental.  I also know, though, that there is an amount of truth in both ideas.  In addition, patronizing organizations like Autism Speaks® take advantage of the perception of division to argue that anyone with a more “functional” diagnosis, who is capable of self-advocacy due to verbal and social skills, is by definition unqualified to advocate on behalf of the rest of the spectrum; they argue that the eugenic battle for eliminating autism from the gene pool is justified on the basis that those who can’t communicate their experience would, if they could, agree, and that people with HFA and Asperger’s are incapable of understanding what they somehow intuit.  (This is a pretty discriminatory attitude, if you ask me, which no one did: it assumes that our fabled lack of empathy disqualifies us from speaking on behalf of others.)  My hope, therefore, is that getting rid of divisions within the spectrum can encourage identification and relation among those differently abled.

Finally, there is the belief, which I find repellantly arrogant, among many diagnosed with Asperger’s that the syndrome ought not to be considered a disability, but perhaps even a superior evolutionary development.  I highly doubt that anyone, again, would be so audacious as to make such a statement about autism in general.  It’s possible to argue for neurodiversity and reject eugenic discrimination without asserting that we do not suffer from legitimate setbacks or engaging in reverse discrimination against “neurotypicals.”  (This is another detrimental term; it implies that there is a concrete, generic norm against which we must define ourselves by distance and contrast.)  The fact is, like it or not, that social evolution has consistently worked in favor of those with the most developed social skills, and that modern society is based around the assumption that people behave and interact in certain normative ways.  This doesn’t mean that we are inferior, but it does mean that, in terms of the ability to function in this extant framework, people whose brains work differently are inherently compromised– read, disabled.  Yes, many of us also exhibit extraordinary abilities that have served humanity in invaluable ways, but this doesn’t negate the fact that our differences cause us to struggle and, often, sadly, suffer.  Denying that we are disabled amounts to denying us the right to appropriate accommodations, and this is something with which I can’t help but being intensely concerned, because those accommodations have allowed me to progress immeasurably farther and lead an exponentially more fulfilling life than I can otherwise imagine.  The idea that this leg up should be taken away from us is best left to the same people who bitch about welfare queens.

So, in the face of these pros and cons, I greet the new DSM with similarly cautious optimism, but also with a slight twinge of loss.  As for many, many others like me, Asperger’s was a label that proved useful to me for a good while.  It helped me make sense of my life, figure out how I could improve my situation, ask for what I needed, and be comfortable with who I am.  However, I’ve known this change was coming for some time, and I look forward to seeing what, if any, changes it will bring in the treatment– both conceptual and therapeutic– of spectrum disorders.   I think that the vocabulary we use to discuss our experiences is crucial to public perception and, in turn, acceptance and accommodation.  I hope that the new diagnosis will become a tool for inclusion rather than exclusion– that rather than narrow the group of people whose differences are acknowledged, or make way for new artificial divisions, it will foster a sense of supportive community that contains a place for all those on the spectrum in our infinite diversity.

3 thoughts on “The sinking of Aspergia

  1. It’s actualy a great blog thanks for this!

  2. tera gold says:

    I’m amazed, I have to admit. Rarely do I come across a blog that’s both educative and engaging, and without a doubt, you have hit the nail on the head. The issue is an issue that not enough men and women are speaking intelligently about. Now i’m very happy that I stumbled across this during my hunt for something concerning this.

  3. […] (Side note:  Some people may be more familiar with the term Asperger’s.  With the recent 5th edition of the DSM, this diagnosis is no longer in use.  It, along with Autism and Pervasive Developmental Disorder, has been reclassified in the more expansive Autism Spectrum Disorder diagnosis.  For my thoughts on this change, see The sinking of Aspergia.) […]

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