Temple Grandin on DSM-5: “Sounds like diagnosis by committee

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When it comes to autism, Grandin argues we're paying too much attention to labels -- and not enough to individuals

BY TEMPLE GRANDIN

http://www.salon.com/2013/05/18/temple_ ... committee/



Excerpted from "The Autistic Brain: Thinking Across the Spectrum." This piece was written prior to the publication of the new DSM-5, but Grandin anticipated much of the thinking in the new edition.

I had my eye on Jack. He was ten years old, and he had taken only three skiing lessons in his life. I was in high school, and I’d been taking skiing lessons for three years. Yet I would watch Jack pass me on the slope, and I would see him execute these gorgeous stem christie turns, and, man, he could handle the four-foot ski jump with no problem. Meanwhile, I was still working my way up to one good christie, and every single time I tried the ski jump, I fell, until I was scared to use it.

What was so special about Jack?

Nothing, it turns out. What was so special, instead, was me — me and my autism. The connection between my autism and my poor athletic performance is pretty obvious in retrospect. At the time, though, I didn’t see it. Not until I was in my forties and I had the brain scan showing that my cerebellum — the part of the brain that helps control motor coordination — is 20 percent smaller than normal did I put two and two together. Now it all made sense! I couldn’t keep my skis together without falling because —

Because what? Because I’m autistic? Or because I have a small cerebellum?

Both answers are correct. Which, however, is more useful? That depends on what you want to know. If you’re looking for a label, something that will help you understand who I am in a general sense, then “because I’m autistic” is probably good enough. But if you’re looking for how I got that way specifically — if you’re looking for the biological source of the symptom — then the better answer is definitely “because I have a small cerebellum.”

The difference is important. It’s the difference between a diagnosis and a cause.

My research on subtypes of sensory problems got me thinking about the limitations of labels. I realized that two different labels — underresponsive to sensory input, and overresponsive to sensory input — can describe the same experience: too much information! The labels might be useful, but, as in the skiing example, their usefulness depends on what you want to know. Do you want to know what the behavior looks like from the outside? Or do you want to know what the experience feels like from the inside? Do you want a description for a set of symptoms — a diagnosis? Or do you want a source for a particular symptom — a cause?

Parents come up to me all the time and say things like, “First my kid was diagnosed with high-end autism. Then he was diagnosed with ADHD. Then he was diagnosed with Asperger’s. What is he?” I understand their frustration. They’re at the mercy of a medical system that’s full of label-locked thinkers. But the parents are part of that system, too. They’ll ask me, “What’s the single most important thing to do for an autistic kid?” Or “What do I do about a kid who misbehaves?” What does that even mean?

I call this kind of thinking label-locked because people get so invested in what the word for the thing is that they no longer see the thing itself. I’ve encountered the same kind of label-locked thinking elsewhere as well. A livestock handler might say to me, “My horse is wild. What should I do?” Or someone who has read my books on animal behavior will say to me, “My dog’s crazy. What should I do?” Well, first you have to tell me what wild or crazy even means in each case. I don’t have a clue unless you give me one. Does the dog try to bite the hands of strangers? Or does he jump on people because he’s really happy?

What I say in all these cases is the same: Don’t worry about the label. Tell me what the problem is. Let’s talk about the specific symptoms.

First question I ask parents who want me to advise them is “How old is the kid?” What I might recommend for a three year old is going to be completely different from what I might recommend for a sixteen year old.

Next question is “Does the kid talk?” If he’s nonverbal, that’s one thing. Let’s start trying to teach him and see what happens. If he’s verbal, I’ll say, “How good is his speech?” If the description is too vague, I’ll say, “Give me an example.” I want to know if the child is speaking in complete and grammatically correct sentences. Does he speak only in single words? Does he pronounce words accurately or does he say, as I did, buh for ball?

Can the kid hold a conversation? Can he place an order at a fast-food counter? If not, then the first thing you want to do is teach the kid social skills, starting with taking turns and saying “Please” and “Thank you.”

Does she have trouble making friends? Is she in school? Does she have a favorite subject?

The questions can go on and on, of course, just as they can for anybody — autistic or not. We’re all individuals. We all have a range of skills, habits, preferences, limitations. What would a totally normal brain even be like? A brain that is average in every way, that has the average number of neural connections, the average size of amygdalae and cerebellum, the average length of corpus callosum?

It would probably be pretty boring.

The differences are what makes us individuals — the departures from the norm, the variations in the brain. Take the corpus callosum, which is the collection of neural cables that stretch the length of the brain and connect the left and right hemispheres. I have more of those cables than normal, but obviously someone can have even more than I do, or fewer than I do, or the normal amount, or fewer than normal. And my brain’s language circuit branches more than a normal brain’s, but, again, the extent to which language circuits branch exists on a continuum. The cerebellum size that probably affects my skiing — another continuum. The number of de novo copy number variations in someone’s DNA? The particular position of those CNVs on the chromosome? Continuum and continuum. I have often thought that eventually we’re going to be asking ourselves at what point this or that autism-related genetic variation is just a normal variation. Everything in the brain, everything in genetics — they’re all one big continuum.

The addition of Asperger’s to the DSM-IV in 1994 validated the idea of an autistic spectrum, but the meaning of “on the spectrum” itself has changed over the years. “In scientific circles,” a 2011 article in Nature reported, “many accept that certain autistic traits — social difficulties, narrow interests, problems with communication — form a continuum across the general population with autism at one extreme.”

In other words, you don’t have to have an autism spectrum disorder diagnosis to be “on the spectrum.”

This notion was popularized by the psychologist Simon Baron-Cohen. In 2001 he and his colleagues at the Autism Research Centre in Cambridge, England, introduced the autism-spectrum quotient questionnaire. People often take the AQ test online just to see whether they fall on the autistic spectrum. They might be wondering if they have Asperger’s or high-functioning autism. Or they might want to see what traits they have that, if amplified, would qualify them for one of those labels.

If nothing else, the AQ test got a lot of people thinking about behavior in a new way — the behavior of autistics, certainly, but the behavior of nonautistics, too. Their own behavior. The behavior of a neighbor, or a coworker, or oddball Uncle Ned with his disturbingly thorough stamp collection. Behavior that previously had seemed peculiar or perhaps aggressively strange now made a kind of sense.

The test consists of fifty statements. For each statement, you choose from four responses, ranging from “definitely agree” to “definitely disagree.” Definitely agreeing with the statement “I would rather go to a library than a party” might indicate that a person has an autistic bent. Definitely agreeing with the statement “I find myself drawn more strongly to people than to things” would suggest a more neurotypical person. When Baron-Cohen and his colleagues administered the test in a clinical setting, the average score in the control group was 16.4 out of 50 while 80 percent of those diagnosed with autism or a related disorder scored 32 or higher. But if you scored 33 would you be autistic? Not necessarily. What about 36 Or 39 What is the cutoff point?

Label-locked thinkers want answers.

This kind of thinking can do a lot of damage. For some people, a label can become the thing that defines them. It can easily lead to what I call a handicapped mentality. When a person gets a diagnosis of Asperger’s, for instance, he might start to think, What’s the point? or I’ll never hold down a job. His whole life starts to revolve around what he can’t do instead of what he can do, or at least what he can try to improve.

Label-locked thinking goes the other way, too. You might be comfortable with your diagnosis but worry that it will define you in the eyes of others. What will your boss think? Your coworkers? Your loved ones? Half the employees at Silicon Valley tech companies would be diagnosed with Asperger’s if they allowed themselves to be diagnosed, which they avoid like the proverbial plague. I’ve been to their offices; I’ve seen the work force up close. Many of the hits on my home page come from Silicon Valley and other areas with a high concentration of tech industries. A generation ago, a lot of these people would have been seen simply as gifted. Now that there’s a diagnosis, however, they’ll do anything to avoid being ghettoized.

Read the rest of this article at Salon here> http://www.salon.com/2013/05/18/temple_ ... committee/

That's what it's trying to do as far as I can tell.

You know, just "ASD" and the severity of each person.

(I'm guessing this is what she's getting at.)

This is the most articulate and informative article I've read on the topic. She makes some points I really wish were being made more frequently. I am glad she said something about taking autistic self reports more seriously.

I've been thinking about the omission from the new DSM and I think it's because there are so many new cases (newly diagnosed) insurance companies don't want to pay for it so poof, someone pays someone off, and it vanishes from the DSM. Now insurance doesn't cover any type of therapy for that diagnosis, any more, because "it does not exist."

That's not exactly what happened here, and it appears that most who would be or have been diagnosed with AS would be diagnosed with ASD now, so they're not disappearing.

Why do you think they omitted it Verdandi?

They said why in the rationale. To sum it up, trying to identify clear differences between the various PDD diagnoses was like trying to carve meatloaf at the joints.

Or in other words: Impossible.

Sounds like an excuse to me. Just my opinion.

Of course it does, and you have your favored explanation already. No need to change your mind on my account.

If you get a chance, though, look up the rationale.

It isn't about not believing you or anything personal towards you, whatsoever. It's more like it sounded like a vague excuse on their part.

If you want to point me in a direction to understand what you said better, what you said about what they said or what it was they said to begin with, that's fine but don't assume I'm attacking you please.

I also never said I am going to stick to my so called "favored explanation" throughout time. I said I'd been thinking about it and it was my opinion. Did I say it's a fact or I am an expert on the topic? No.

I didn't say you attacked me. I wasn't trying to be sarcastic. I am sorry that you took that as me taking what you posted personally. I've just been in so many back and forths I am not invested in changing minds.

Here's a much more involved description:

http://www.plosbiology.org/article/info ... io.1001544

OK. It did sound sarcastic to me. First time I have spoken what I thought (as I only thought about it yesterday), so it seemed a bit harsh.

Thank you for the link.

I realized my first response sounded harsh so I tried to take the harsh out, only I guess I didn't succeed as well as I hoped.

This gets me into a lot of trouble sometimes.

Thank you for sticking with me and explaining. I feel better

It does make a lot of sense though. I've never been sure what the difference between autism and AS it. The closest I've got is "autism has a language delay", which seems a fairly minor difference.

I think the language delay can be a fairly big difference, but then there's the assumption that Asperger's represents little or no language impairment because of the lack of apparent delay in speaking.