11/09/2009

Is the DSM-V throwing the baby out with the bathwater?: Thoughts on labels

The forthcoming new DSM (DSM-V) is getting rid of the diagnosis of Asperger's syndrome.* It's sparking a lot of controversy. The New York Times printed a set of three letters that represent some of the main positions in this debate. What a great jumping off point for a discussion of the autistic spectrum, diagnosis, and what makes a label valid!

Note: The names of disorders (i.e., autism, Asperger's, ASD) will usually appear in quotes but will occasionally appear without. When it appears in quotes, I'm talking about the label. When it appears without, I'm talking about the condition.




To the Editor:
Only an academic psychiatrist would believe that because the term Asperger’s syndrome is “confusing and not terribly useful,” to quote Catherine Lord of the University of Michigan, it is appropriate to replace it with “autism spectrum disorder” — a category that is even broader thus even less useful.

Perhaps they should consider a more politically correct and even broader term: “mentally and emotionally challenged,” which would encompass the entire range of everything and make the diagnostic manual obsolete.
Ron Baldwin
Newark, Del.

Ron Baldwin may have pointed out a loophole, but he has a pretty unsophisticated view of what makes a label valid and useful.

What makes a label valid?
What makes a label valid is not how broad or narrow it is, but how well it posits a cause-effect relationship that suggests specific ways of responding to the condition. The cause should be an explanation of the specific function that is impaired and the corresponding brain wiring problems. For example, here's a description of a condition I made up:

"Hyperfocus is a neurological profile in which an individual has heightened ability to focus on one thing (a strength), but has impaired task-switching ability (a weakness). Hyperfocused people can be seen playing video games or writing books for hours on end, often forgetting to eat, sleep, or go to the bathroom, and often do not respond when others interrupt them. They appear to be in a trance and may describe themselves as in a 'flow' state if familiar with the concept. XYZ problems in an areas that integrate visual information and XYZ task-switching areas are underdeveloped in hyperfocus. People with this profile are exceedingly good at tuning out environmental noises because of XYZ process in XYZ auditory and frontal attention areas. This may because when not in a hyperfocused state, they are intensely auditorily sensitive and may jump at every little noise because of hyperactivation in auditory area XYZ.

Hyperfocus can be constructive in people who do creative work--most accounts of creative work describe a flow state of this sort, hence the idea of "inspiration." It can be problematic in school and work environments that require a lot of task-switching. It's not great for multitasking or performing rote tasks that don't require a lot of attention. Hyperfocused adults should arrange their lives and careers in such a way that their hyperfocus helps, rather than harms, their performance. They may need to set timers to break them out of their trances. They may need headphones, earplugs, etc. to help with their auditory sensitivity, as well as coping skills like avoiding noisy places when possible. Helpful exercises would train them in integrating visual information, integrating auditory information, and task-switching. Repeated practice would help rewire the brain so hyperfocused people have an option other than hyperfocusing."
Valid labels will tend to be fairly narrow because they have to be specific about function and, when possible, neural mechanisms. If there are ten different reasons why one might have an attentional or social problem, each one will have a different label and they may be grouped together as a family ("Attentional Disorders" or "Social Disorders"). However, broad labels of a certain sort can also be valid. If one functional problem (a sensory processing difficulty, say) turns out to cause a variety of symptoms now grouped under several labels (i.e., "ADHD," "Asperger's," "high-functioning autism," "PDD-NOS," "SPD," and "NLD"), then the label will seem "broad." It will still be valid, though, because these heterogeneous symptoms have one cause.

In this respect, psychological diagnosis would work like medical diagnosis, which it currently does not. Medical diagnosis organizes by causes, not by symptoms. You can imagine how much headway a doctor would make if there were diseases called "Fatigue," "Nausea," "Congestion," "Mild Chest Pains," "Vomiting," "Fever," etc. But I would argue that "ADHD," "Asperger's," and the rest are the equivalent--they are descriptions of attentional, social, and motor symptoms that can exist for any number of reasons.

What makes a label useful?
What makes a label useful is very different from what makes it valid, although obviously a valid label will be more useful in that it implies more suggestions for treatment.

"Useful" can mean at least 3 different things. For Ron Baldwin, it means "valid and intellectually consistent," a nice minimum qualification that, IMO, most LD labels don't currently meet (but that's another post). It can mean "medically valid," in the sense I just described. It can mean "useful for identifying people who have a learning disability and getting treatment they might not otherwise have, and which is better than nothing." A label can be useful for identifying and treating people without being either intellectually consistent or medically valid. And I think the current labels are very useful in this sense. Finally, it can be useful for helping people understand themselves and explain themselves to others. An intellectually and medically consistent set of labels would probably be more useful for this, but some people find the current labels useful in this sense and are very attached to them.

How Valid and Useful are Asperger's and ASD?
With this more sophisticated understanding of diagnosis in mind, let's look at "Asperger's Syndrome" and "Autistic Spectrum Disorder" again. How good are these labels? Which is better and which is worse? And are either too broad to be useful?

Several years ago, shortly after Adam was diagnosed with "hyperlexia" and "autistic spectrum disorder" (more like "Asperger's" than "classic autism"), his parents went to get a second opinion. The diagnostician said he didn't recognize "hyperlexia" because it was a linguistics term, not a clinical term. He said he had only 2 labels: "classic autism" and "Asperger's." Since Adam clearly didn't have classic autism, it was "Asperger's" or nothing. While not all clinicians are like this man, "Asperger's" is often a convenient dumping ground for highly intelligent and verbal kids with nonverbal learning disabilities who don't quite fit any label--kids with persistent attentional, motor, and social issues who don't seem to have ADD, classic autism, emotional problems, or any of the other usual suspects.

What happens to these kids when there's no longer a label "Asperger's?" I see two possibilities. The first one was raised in a letter by Nomi Kaim, who herself has Asperger's.
Professionals who work with Asperger’s have a more specialized knowledge base than those who treat autism as a whole, and books on Asperger’s address topics like higher education and romantic relationships that do not apply to many people with autism. Indeed, having to constantly straddle the line between disability and (often astonishing) capability is what makes the Asperger’s experience unique.

For me, the greatest gift of the term Asperger’s syndrome is that it has given me an identity. If the label disappears, I fear that the distinction between Asperger’s and autism will eventually also disappear from the literature and from the minds of professionals. Then people like me, who have a subtle, even “invisible” disorder, will never find the resources they need to get a diagnosis and make sense of their lives.
On the other hand, there are more descriptive labels that haven't yet gained wide acceptance: "Sensory Processing Disorder" (SPD) and "Nonverbal Learning Disability" (NLD). Sensory Processing Disorder seems to have more of an obvious basis in brain function, while "NLD" seems to be more of a symptomatic catchall, like "Asperger's" and "ASD." Both labels could fit children who are lumped into "Asperger's" by default. Maybe if we stop labeling them "Asperger's," "SPD"and "NLD" will come into use out of necessity.

"ASD" is designed to be an umbrella diagnosis. Like "Asperger's," it's broad enough to include people with odd patterns of noverbal learning disabilities that don't look like classic autism, and might not otherwise be diagnosed. It has two major advantages relative to "Asperger's," and two disadvantages.

First, "ASD" is more likely to help kids get treatment. According to the New York Times, in some states like California and Texas, people with a diagnosis of autism qualify for state services, while those with Asperger's and PDD-NOS do not.

"Asperger's" is a one size fits all diagnosis: you have it or you don't. "ASD" highlights that people with the disorder are just on the extreme end of the continuum of traits we all have. As such, it lets tools that help severely socially disabled people be used to help people with less severe deficits. Furthermore, it suggests that people with ASD are not aliens; their differences are in degree rather than in kind. That helps neurotypical people understand and sympathize with them despite their sometimes frustrating behavior.

But "Asperger's" also has advantages "ASD" lacks. Because "Asperger's" is somewhat more homogeneous than "ASD," an intervention is more likely to work for a particular child with Asperger's than it would be for one with ASD. The variety within "ASD" might be one reason for all the controversy between proponents of various approaches (ABA, Floortime, diet, etc.). Most likely, none is the one true solution to autism, but each clearly works for at least some kids.

"Asperger's" is visualizable enough to be the basis of an identity. The label "ASD" is too vague for a person to really identify with what it describes, but anyone can understand and identify with a "little professor." As a result, people with Asperger's have a deep, emotional attachment to their diagnosis:

For me, the greatest gift of the term Asperger’s syndrome is that it has given me an identity. -Nomi Kaim

"On one trip to the bookstore I came across a book about Asperger's Syndrome...After about 15 minutes of reading about AS, my jaw dropped to the floor. I said very audibly in the store, 'Hallelujah!'...I felt an immense wave of relief wash over me as everything suddenly made sense. I looked back over my life, [through] all the painful memories that could now be explained...Getting a diagnosis can be a very cathartic experience...Those hidden barriers between you and others that seemed like a mystery over the years will finally be understood...It made me feel both better and worse knowing that I hadn't meant to disturb or hurt anyone." -Nick Dubin, Breaking Through Hidden Barriers, quoted in Asperger's From the Inside Out

"I have finally reached the end of my race to be normal. And that was exactly what I needed. A finish--an end to the pretending that had kept me running in circles for most of my life." -Lianne Holliday Willey, Pretending to be Normal

"I bought a book of essays on the condition...and devoured it with stunned fascination. Despite the daunting medical language of some of the chapters, I felt as though I had stumbled upon my secret biography. Here it all was--the computer-like retention, the physical awkwardness, the difficulties with peers and lovers, the need for routine and repetition, the narrow, specialized interests...had they created a developmental disorder just for me?...I wouldn't wish my condition on anybody...yet I am also convinced that many of the things I've done were accomplished not despite my Asperger's syndrome but because of it. I'm sure it's responsible, at least in part, for my powers of concentration...I'm sure that it's one of the reasons I take my work so seriously." -Tim Page, in Parallel Play

"Two years after diagnosis, my relationships have been more civil towards [my coworkers]. I believe they improved because I learned to be easier on myself and others for our imperfections. -Jason Zervoudakes, quoted in Asperger's From the Inside Out

Now imagine what a blow it will be to them to lose this diagnosis that had such effects on their lives. Is it any wonder that the new DSM is so controversial?

Some conclusions
Neither "Asperger's" nor "ASD" are medically valid. "Asperger's," because more specific, is somewhat more intellectually valid. "ASD," because more general, is more useful.

There's actually a simple solution to the controversy. Why not maintain both labels, but group "Asperger's syndrome" as a more specific disorder under the umbrella of "ASD?" That's how I've always thought of it and seen it described.

We don't have a science yet since our diagnoses are far from medical, so we should be humanist about the diagnostic process and adopt whatever labels would do the most good for the most people. Thus, we should use both.

I think the DSM-V is taking the wrong approach to making labels more "valid." Rather than throwing out the current labels, we should instead revise them to make them more intellectually and medically valid, and add more.