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Authors: Temple Grandin,Richard Panek

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What isn’t scientific about the
DSM-5
’s handling of the diagnostic criteria, however, is its collapsing together social interaction and social communication. Social interaction covers nonverbal
behavior
that involves being with another person—making eye contact, smiling, and so on. Social communication covers the verbal or nonverbal
ability to converse—
share ideas and interests, for example. Do impairments in social communication and impairments in social interaction actually belong to one single domain? Does an inability to get words out and master grammar and syntax (known as specific language impairment or syntactic-semantic disorder) really come from the same place in the brain as a tendency to speak with abnormal intonation and give conversational responses that are socially inappropriate (known as pragmatic language impairment or semantic-pragmatic disorder)? Are language mechanics and social awareness closely related, neurologically speaking? I doubt it—and I’m not alone in that doubt.

A 2011 paper
in the
Journal of Autism and Developmental Disorders
surveyed more than two hundred fMRI and DTI studies in an effort to determine whether the dyad model has a basis in neuroimaging data. The authors’ conclusion: “only partially.” They found that neuroimaging supports the separation of behavior and communication into two categories. No surprise there. But they also found that neuroimaging supports the division of communication into two further categories, just like the
DSM-IV
said—though not necessarily the two categories the
DSM-IV
described!

The
DSM-5
is also changing the scope of the diagnosis itself. In the
DSM-IV,
the autism-related category was pervasive developmental disorders, and it included
8
these diagnoses:

 

  • Autistic disorder (also called “classic” autism)
  • Asperger syndrome
  • Pervasive developmental disorder not otherwise specified (or atypical autism)

 

The
DSM-5
lists one:

 

  • Autistic specturm disorder

 

So, you might ask, what happened to Asperger’s and PDD-NOS? Let’s take them one at a time.

The big change regarding Asperger’s and autism is speech delay. Previously, if you had speech delay as a kid, as I did, then you fell on the autistic side of the diagnostic divide (assuming you met the other necessary criteria, of course). If you didn’t, then you fell on the Asperger’s side. Now some of the former Aspies will get an ASD diagnosis, just by virtue of meeting all the criteria for that diagnosis but not having speech delay.

The APA says that those already diagnosed with autism will keep the diagnosis. But what about the previously undiagnosed Aspies who meet only the social half of the new dyad criteria—deficits in social communication and interaction but not in repetitive behaviors and fixated interests? They could find themselves in another subcategory altogether: communication disorder. Specifically, they’ll find themselves receiving a diagnosis that’s new to the
DSM
: social communication disorder. Which is, basically, autism without the repetitive behaviors and fixated interests. Which is, basically, rubbish. (To my way of thinking, social impairments are the very core of autism—more so than the repetitive behaviors.) So having a diagnosis of social impairment that’s distinct from the diagnosis of autism is the same as having a diagnosis of autism that’s distinct from the diagnosis of autism!

Those who previously would have been diagnosed with Asperger’s might learn that they don’t belong in the neurodevelopmental-disorders category at all, at least not officially. They could find themselves in a whole other diagnostic category: disruptive, impulse-control, and conduct disorders. The decision ultimately comes down to an individual doctor’s opinion—and if you say that that doesn’t sound like science, I wouldn’t disagree.

First, as a biologist, I find just about this whole diagnostic category scientifically suspect. The category includes six diagnoses. As far as I can see,
only one has any basis in science: intermittent explosive disorder. Neuroimaging shows that if you lack top-down control from the frontal cortex to the amygdala, you’ll be prone to outbursts that will get you fired or arrested. But as for the other diagnoses in the disruptive, impulse-control, and conduct disorders category? I smell a strong case of “If we label them that, then we don’t have to give them ASD services and we can just let the police deal with them.” The
DSM
might as well call this category Throw ’Em in Jail.

Second, these diagnoses overlook the gifted but frustrated—the typical Aspie or high-functioning autistic who is laboring in a nonsympathetic environment. Consider the oppositional defiant disorder diagnosis: “The disturbance in behavior causes clinically significant impairment in social, educational, or vocational activities.” I guarantee you that if you take a third-grader who can read high-school math texts and make him do baby-math drills over and over and over, he will turn oppositional defiant—because he’s bored out of his mind.

How do I know? Because I’ve seen these cases—kids who are considered to have severe behavior problems at school until you give them math lessons that meet them where their brains are. Then their behavior normalizes, and they become productive and engaged—maybe even model students.

And here, again, we see the limitations, and even dangers, of label-locked thinking—the difference between what behavior
looks
like from the outside and what it
feels
like from the inside.

As for PDD-NOS,
DSM-IV
used this catchall diagnosis to describe several scenarios, including atypical autism, defined as “presentations that do not meet the criteria for autistic disorder because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these.” In the
DSM-5,
though, people with that diagnosis might find themselves jettisoned from autism altogether and put into another neurodevelopmental-disorder subcategory, intellectual-development disorders—specifically, intellectual or global developmental delay not elsewhere classified. No wonder so many parents feel like they’re in the Diagnosis of the Year club.

For a lot of people, the changes to the
DSM
won’t make a difference. For instance, under the
DSM-5
guidelines, I would be diagnosed with autistic spectrum disorder. If you look at the description of what constitutes social impairments and repetitive behaviors, I definitely qualify. Extreme distress at small changes? That was me as a kid. Fixated interests? Boy, I had that. Hypersensitivity to sensory input? Let me tell you about the squeeze machine.

But for a lot of people, these changes will make a huge difference. A 2012 survey
of 657 people who had been clinically diagnosed with any one of the three
DSM-IV
autism spectrum disorders found that 60 percent would continue to receive the ASD diagnosis under
DSM-5
criteria but 40 percent would not. Breaking those numbers down into subgroup diagnoses, the researchers discovered that 75 percent of subjects who had received the specific diagnosis of autism according to
DSM-IV
criteria would also meet the
DSM-5
criteria for ASD, but only 28 percent of those diagnosed with Asperger’s would, and only 25 percent of those diagnosed with PDD-NOS would.

A later study
that concentrated on only the PDD-NOS diagnosis reached a far more optimistic conclusion: nine out of ten children with a
DSM-IV
PDD-NOS diagnosis would be eligible for a
DSM-5
ASD diagnosis. The disparity between the two reports, however, should give any parent, let alone scientist, pause.

What practical effects will these diagnostic changes have? Will people who were labeled Asperger’s and are now labeled autistics experience a different response from the world? From themselves? How will these changes affect insurance coverage? What about social services? Autistics have more problems than those with Asperger’s; will they still get the same range of help as before? That question will be decided on a state-by-state basis, but these changes have opened a Pandora’s box of possibilities.

And research! Any study of autism that uses
DSM-5
criteria for autism is going to be mixing speech-delay apples and non-speech-delay oranges. For instance, we’ve seen in the literature that sensory problems tend to be a whole lot worse among members of the population who have speech delays. How are researchers going to be able to compare
DSM-5
sensory-problem studies with pre-
DSM-5
studies?

To me, the
DSM-5
sounds like diagnosis by committee. It’s a bunch of doctors sitting around a conference table arguing about insurance codes. Thanks to label-locked thinking, we now have a cornucopia of diagnoses—and there simply aren’t enough brain systems for all these names.

Back in 1980, when the
DSM-III
first tried to codify the diagnosis of autism, nobody knew about brain systems. Nobody knew much about DNA sequencing. But now we do. We may not be able to apply those advances in science to the
DSM
yet, but what we can do, I feel, is begin to change the way we think about the autistic brain. Instead of talking about
sets of symptoms
in an attempt to assign them a label, we can begin to talk about
one particular symptom
and attempt to determine its source. We’ve reached a point in our research that we can match symptoms and biology.

For the first thirty years or so after Leo Kanner introduced the term
autism,
in 1943, the emphasis in the psychiatric community was on finding a cause, and because psychoanalytic theory dominated the psychiatric thought of the day, the cause was hypothesized to be the behavior of the parents, especially the mother.

Let’s call this period phase one in the history of autism, and let’s say it extended from 1943 to 1980, the year the American Psychiatric Association published the
DSM-III.

That edition of the
DSM
represented a shift in the psychiatric community toward greater scientific rigor in its treatment of mental illnesses, a shift that included the first official diagnosis for autism. Since then, much of the discussion about autism has involved what specific symptoms make up the diagnosis.

Let’s call this period phase two in the history of autism, and let’s say it extended from 1980 to 2013, the publication year for the
DSM-5.

The diagnosis can and will continue to change, but now we can shift our emphasis once again. Thanks to advances in neuroscience and genetics, we can begin phase three in the history of autism, an era that returns to the phase-one search for a cause, but this time with three big differences.

One,
the search for the cause involves not the mind but the
brain
—not some phantom refrigerator mom but observable neurological and genetic evidence.

Two,
because we realize how extraordinarily complex the brain is, we know this search will lead not to
a
cause but to
causes.

Three,
we need to be looking for a cause or multiple causes not of autism but of
each symptom
along the whole spectrum.

Phase-two thinking says,
Maybe I can’t ski well because I’m autistic.
Phase-three thinking says,
Maybe I can’t ski well because I have a smaller than normal cerebellum.

Phase-two thinking says,
Let’s group people together by diagnosis.
Phase-three thinking says,
Forget about the diagnosis. Forget about labels. Focus on the symptom.

Instead of—or at least in addition to—assigning human subjects to studies by their autism diagnosis, we should be assigning them by their main symptoms. As I learned from examples like Carly Fleischmann’s description of feeling overstimulated in the coffee shop, I think researchers should stop pooh-poohing self-reports and start looking at them very carefully and, in addition, begin eliciting them from subjects in new ways. Then they should be putting the subjects into studies based on those self-reports.

I once had a graduate student who saw wavy lines between the curved lines in a drawing of a cattle chute, and sometimes she saw only pieces of words. She wasn’t autistic, but these symptoms were notably similar to those described by Donna Williams, who definitely is autistic.

I say, Throw ’em both in a scanner, and let’s see what lights up. Let’s see where the problem is. Is it in the language-output area? Language-meaning?

Let’s take the people who can’t ride on an escalator because they can’t figure out how to get on and off. Or let’s take the people who hate driving at night. Let’s take those subgroups and put them against controls who don’t have that problem. Let’s take this secretary over here who can type 180 words a minute. Let’s take another secretary who can type 90 words a minute. Let’s throw them both in a scanner and compare them, motor cortex to motor cortex.

Some researchers, I’m pleased to see, are beginning to recognize the limitations of labels. And they’re beginning to recognize the need for narrower definitions of targets. A 2010 article,
“Neuroimaging of Autism,” concluded: “For autism it becomes more and more clear that the possibility to identify one single marker might become very small, just because of the large variability we meet in [this] spectrum. In this view the definition of
smaller autism subgroups
with
very specific characteristics
might give a key to further elucidate this complex disease” (emphases added).

Personally, I would go even further and argue that we need to think not just about smaller autism subgroups that are defined by their symptoms but about the symptoms themselves. Because thinking about individual symptoms on a symptom-by-symptom basis will eventually allow us to think about diagnosis and treatment on a patient-by-patient basis.

My friend Walter Schneider, who developed high-definition fiber tracking at the University of Pittsburgh, is already making that argument—probably because he has so vividly seen for himself the potential of this approach.

BOOK: The Autistic Brain: Thinking Across the Spectrum
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