The DSM-5, Autism, and The Obscenity Decision
Although the DSM-5 was published less than a month ago, it has already been the subject of a staggering amount of commentary. For those unfamiliar with the DSM-5, it was constructed by The American Psychiatric Association and its full title is Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition. It provides a list of every “official” mental health disorder and a set of criteria for their diagnosis. The 5th edition comprises the first full set of revisions since 1994 and includes some radically different conceptualizations of mental disorders from those presented in the DSM IV. It’s an enormous (945 pages), expensive (I bought a discounted softcover from Barnes and Noble for a mere $136), controversial manual that will take those us a long time to digest. For the past 3 years, however, I’ve been focusing on the wholesale changes that were proposed and now adopted to the diagnoses along the Autism Spectrum.
Prior to the publication of the DSM-5, disorders on the Autism Spectrum were placed in the category of Pervasive Developmental Disorders. That category, along with the individual diagnoses that comprised it – Asperger’s Disorder, Autistic Disorder, Pervasive Developmental Disorder – Not Otherwise Specified, Childhood Disintegrative Disorder, and Rett’s Syndrome – have been eliminated. The new manual replaces all those with one diagnosis – Autism Spectrum Disorder – which can be modified with varying degrees of severity and “specifiers.” The APA’s rationale for this change centers on research that shows that the old model was useful for distinguishing those people on the spectrum from those who were not on the spectrum but that it was less effective at distinguishing one specific disorder on the spectrum from another. They found that clinicians were using the various diagnoses interchangeably, which lends credibility to their statements about the overlap and repetition among those different conditions.
The varying reactions to the changes made to the Autism Spectrum have depended largely upon the station of the person doing the reacting and, to a large extent, how they answer the question “Why diagnose?” To that end, many researchers and psychiatrists seem largely in favor of the new version of Autism. The scientific community had good reason to be frustrated with the DSM IV. Establishing reliability and validity in research became difficult, if not impossible, when the established boundaries between disorders were as fluid as they were. For instance, if a researcher were interested in learning more about any possible differences in – say – gross motor control between adolescents with Asperger’s Disorder on one hand and adolescents with PDD-NOS on the other hand, the prospects for reaching any meaningful conclusions are limited if the clinicians who did the evaluating are used what amounted to different sets of diagnostic criteria from one client to another.
Reactions to the proposals were considerably more varied among people on the Autism Spectrum and among members of the Autism advocacy community. There were those who felt that it would be a good thing to break down boundaries and barriers that were probably artificial in the first place. They felt that having one diagnosis – Autism Spectrum Disorder – rather than 5 would be a step towards bringing the Autism community closer together. On the other hand, some felt that lumping high functioning individuals with Asperger’s Disorder together with people with much more debilitating forms of Autistic Disorder, for example, would be unnecessarily stigmatizing. They worried that the changes would serve no purpose other than to further pigeon-hole a segment of society that had already received more than its fair share. Noted Autism author, Steven Shore, once wrote “If you’ve met one person with Autism, you’ve met one person with Autism” and the community’s widely disparate points of view on this issue attests to the individuality he was describing.
Of all the constituencies with a stake in this issue, the group of people most consistently opposed to the APA’s proposals seem to be clinicians whose work focuses on people on the spectrum. As a member of that group myself, my point of view lines up closely with that of many of my colleagues.
Although this may seem a digression, I’d like to share my experience with this issue as a way of illustrating how I came to think the way I do. Through a strange combination of events, I found myself in April, 2010 digging vigorously into this topic. I sent comments to the APA, wrote an Op-Ed for a local paper, and was asked by The Asperger’s Association of New England, one of my favorite organizations, to lead a discussion at their Fall conference on this topic. In preparing for the conference, I made a point to speak to other clinicians in order to hear what they had to say on the issue. In all the discussions I had, I made a point to ask “What’s the difference between Asperger’s Disorder and Autistic Disorder?” As the researchers and psychiatrists might have predicted, I got some pretty varied answers. However, taken together, the answers formed a collective vision of these diagnoses that I thought contained a good deal of validity and consistency.
As I was putting my thoughts together for the conference, I also took a look through the files I had on all my clients whose diagnosis fell along the spectrum. I asked myself whether or not the people with Asperger’s Disorder couldn’t have just as easily or accurately been diagnosed with PDD-NOS or some other similar disorder, or vice versa. For many, the answer was a definitive “yes,” bearing out the idea that the DSM IV model had some serious flaws and overlap from one disorder to another. On the other hand, there were some kids I worked with who had been diagnosed with Asperger’s Disorder, who were unquestionably “Aspie.” No other diagnosis described them nearly as accurately. Other clinicians I spoke to made similar observations about their clients. While I can put my finger on some of the reasons for my own conclusions, I was reminded of the comments made by Supreme Court Justice Potter Stewart in his opinion on the landmark 1964 case (Jacobellis v. Ohio) on obscenity. Justice Stewart wrote:
Supreme Court Justice Potter Stewart
“I shall not today attempt further to define the kinds of material I understand to be embraced within that shorthand description and perhaps I could never succeed in intelligibly doing so. But I know it when I see it….”
One clinician I spoke to pointed out the irony of APA committee members complaining about the reliability and validity of a document written by their own organization. In fact, The DSM IV listed a total of 12 possible criteria for Asperger’s Disorder and 15 for Autistic Disorder. Of those, 8 were identical from one disorder to another. Other criteria were so similar in language that their differences were really no more than semantic. Given those similarities, is it surprising that they came to be used interchangeably? By instituting wholesale changes to this diagnostic class in the DSM-5, The APA is, in effect, pulling the rug out from under those who had done little besides making the best of the imperfect system – a system devised by the same organization now tearing it down. By chucking that system, they have thrown out the baby with the bathwater. It would have been a realistic and much more helpful endeavor for the APA to have focused on making improvements to the old system rather than reinventing the wheel as they did.
As I mentioned earlier, one’s feelings about this issue often come down to how one answers the question “Why diagnose?” There are plenty of good answers – improving research, insurance billing, case conceptualization to name a few – come to mind. By far the most important reason to diagnose, however, is to help people make their lives better. To that end, the DSM IV system, warts and all, worked well. The diagnoses along the Autism Spectrum enabled a group of people to move beyond viewing themselves as misfits or as just strange. It gave them a lens through which they could take a more systematic view of their strengths and weaknesses. In many cases, it also gave them a path forward towards furthering their strengths and mitigating their weaknesses. It helped to create a climate in which a group of people who are often characterized by the difficulty they have in coming together and forming a community were able to do just that. That’s nothing to sneeze at – questionable validity and all.
After picking up the DSM-5 this week and giving it a good once over, my feelings are a bit more tempered than they were before. The Autism Spectrum Disorder criteria and narrative seems to afford us more flexibility and specificity than I had anticipated it would. Despite my lingering misgivings about the new system, I am optimistic that we will all make it work somehow. The APA, despite its well-earned reputation for arrogance and political self-advancement, deserves some credit for working to improve reliability and validity. In the end, most of us can only heave a sigh and get with the new program. The National Institutes of Mental Health is working on a new diagnostic system that aims to “incorporate genetics, imaging, cognitive science, and other levels of information” and noted Autism author Temple Grandin urges us – with tongue planted firmly in cheek – to make accurate diagnoses by taking people and “throwing ’em in the scanner.” In the future, it may be plausible that diagnoses will be made more frequently through the use of technology and “hard science.” In 2013, most of us don’t have access to PET Scan machines or genetic labs and still rely on a system that makes inferences through behavioral observations and cognitive testing. For now, we’re going to have to suck it up and, as best as we can, embrace the DSM-5. At least until The APA pulls the rug out from under all of us again.
I don’t understand why autism is even in the psychiatry manual, when it is neurological.
Michele-
Thanks for reading my blog and for making the comment. My sense is that the boundary between what’s psychiatric and what’s neurological is a pretty fuzzy one. Unfortunately, psychiatry uses terms like “illness” and “disorder,” which sound judgmental and a bit demeaning. Some of the conditions in the DSM are nothing more that strong manifestations of traits that we all have to one extent or another. ADHD is the prime example. I don’t know anyone who is not, on occasion, impulsive or distractible. The place at which we choose to give it a label can seem arbitrary but ultimately it’s going to come down to how much it affects a person’s life. Many people have traits that resemble those found on the Autism Spectrum as well and the line seems to get drawn in a fairly similar way.
Before responding to your comment, I went to the source of all knowledge (not really), Wikipedia. I found their listing for mental disorder helpful. I followed one of the links on their listing and also found it helpful. Here it is, if you’re interested: title=”Guardian/Mental Illness/DSM-5″>http://www.guardian.co.uk/society/2013/may/12/medicine-dsm5-row-does-mental-illness-exist..
Thanks again for reading my blog and taking the time to comment.
I don’t understand why autism is even in the psychiatry manual, when it is neurological.
Michele-
Thanks for reading my blog and for making the comment. My sense is that the boundary between what’s psychiatric and what’s neurological is a pretty fuzzy one. Unfortunately, psychiatry uses terms like “illness” and “disorder,” which sound judgmental and a bit demeaning. Some of the conditions in the DSM are nothing more that strong manifestations of traits that we all have to one extent or another. ADHD is the prime example. I don’t know anyone who is not, on occasion, impulsive or distractible. The place at which we choose to give it a label can seem arbitrary but ultimately it’s going to come down to how much it affects a person’s life. Many people have traits that resemble those found on the Autism Spectrum as well and the line seems to get drawn in a fairly similar way.
Before responding to your comment, I went to the source of all knowledge (not really), Wikipedia. I found their listing for mental disorder helpful. I followed one of the links on their listing and also found it helpful. Here it is, if you’re interested: title=”Guardian/Mental Illness/DSM-5″>http://www.guardian.co.uk/society/2013/may/12/medicine-dsm5-row-does-mental-illness-exist..
Thanks again for reading my blog and taking the time to comment.
I once asked a similar question of a psychiatrist friend of mine. He smiled and replied, “Well, when you get right down to it, *everthing* is neurological, isn’t it?”
I think the objection that many of us who are autistic have is exactly what you said. The labels using “disorder” indeed “sound judgmental and a bit demeaning.” More than a bit, I might add. And to no good purpose. In fact, I think it leads to counterproductive thinking; about how to “fix” someone rather than acknowledge simply that they are different and that this presents challenges in how to deal with an alien world.
While your idea about some DSM conditions fading into normality may have some justification, I fear that way of thinking is harmful when considering autism and related conditions (schizophrenia, bipolar, dyslexia, etc.), which arise from a very different neural structure. I have participated in some studies at Beth Israel which have found stunning differences in brain function with respect to things such as plasticity. The distributions of test results of the autistic and control groups were so markedly different there was almost no overlap in the observations. This gives (me) some hope that there may be simple tests that can be developed to identify brains that might be autistic.
Including autism in the DSM also implies to many, if not most, that autism is “treatable” or (shudder) that there is a “cure.” This is terribly harmful. Awareness of autism is a huge gift, I work with neuroexceptional couples (usually one partner is neurotypical and the other is not), and a simple understanding of how very differently their brains work and perceive the world can provide huge relief and assistance to both partners. We nee understanding, acceptance, and celebration, not “treatment!”
A sample of some of my commentary on related issues: http://www.mfw.us/blog/2012/12/02/neurobabble-and-all-that/
Michael-
Thanks for you thoughtful comment. You and I are almost entirely on the same page. I have little doubt that someday in the not too distant future, imaging and genetic tests for Autism will become much more commonplace and will enable us to leave the DSM and all its political, paternalistic baggage behind us. In 2013, I just don’t see those techniques being viable options for enough people to enable us to abandon the methods of diagnosis that involve as much art as they do science. I’m a clinician in private practice and I don’t have anywhere near the level of clout that NIMH does so I’m not really in a position to do what they did. I suppose that when I wrote about “sucking it up” and using the DSM-5, I should have added that, while doing so, we can all continue to be thorns in the side of the APA.
Here’s a question that may sound like I already know the answer – but it’s being asked in an attempt to glean a better understanding. If, as you suggest, understanding, acceptance, and celebration, not treatment, are the goals, how can we continue to make demands of our public schools and institutions to provide funding for accommodations and additional services for kids who are on the spectrum? I’m asking this as someone who has worked with hundreds of kids on the spectrum and who continues to be blown away by their many and varied assets. It seems to me that those services, which are not cheap, are closer to treatment than they are to the other ideas you mention.
Again, very thoughtful comments. I subscribed to your blog and look forward to having a chance to really sink my teeth into your writings.
Bruce
Bruce, I appreciate your following up on my comments. As may be obvious to you, I’m not trained in this field. I only came to my awareness of my own autism about 8 years ago, at age 59. Also, I have no clinical experience, nor any firsthand knowledge of any of the programs available today for kids. I went to school before the days of Special Education.
What I do have, however, is abundant curiosity, and a willingness to blend my life experiences with what I learn from reading, talking with clinicians and academics, and attending programs. I know that in some contexts, my perspective has helped people (talking with parents, working with neuroexceptional couples in support groups, for example). But I’m also aware that a little knowledge can be a dangerous thing. Offsetting that, I hope, is some wisdom that comes with living for a long time.
I agree with you that, for now, we can’t replace the current “methods of diagnosis that involve as much art as they do science.” One of my self-appointed projects is to come up with a list of characteristics that I think help identify thinking and behavior patterns of autistic people that are more robust that the simple (and simplistic) checklist in the DSM. Many of my in-person and on-line conversations with other autistic people confirm for me that there are many “tells” (as poker players call them) that reveal to us who are kindred spirits. These can be simple things like sensory reactions or more complex behaviors like not being particularly fussed with consequences. Some of these things are simply amusing, some are frustrating, and some are painfully obstructive.
And, of course, I should hasten to add, not everyone experiences the world in the same way. Those who are alexithymic, for example, are going to have difficulty with empathy, but that has nothing to do with their autism.
http://www.mfw.us/blog/2013/03/22/empathy-as-a-form-of-communication/
To address your query, “If, as you suggest, understanding, acceptance, and celebration, not treatment, are the goals, how can we continue to make demands of our public schools and institutions to provide funding for accommodations and additional services for kids who are on the spectrum?” — leaving aside my objection to the euphemism “spectrum” (a topic for another time), we may be dealing with more semantics here than real issues. With the “understanding” part comes a knowledge that kids (and adults, too, believe me!) need help making their way in a world that does not make intuitive sense. I don’t like the word “treatment” because it evokes the medical (disease) model, but you can do the same things you are doing and call them something friendlier. Remediation is a word used by some.
With “acceptance,” moreover, comes a realization that it isn’t helpful to [sorry for the shopworn phrase] “pound a square peg into a round hole.” Our objective should not be to “makeover” people but to improve their ability to accomplish what they want. This involves two-way understanding. Granted, the largest burden falls on the minority, but there should be an effort to make accommodations, not just to modify “non-normal” behavior.
I would love to have a conversations sometime about your work, because I have many questions about dealing with young people. I worry that sometimes we just don’t give autistic kids time to catch up in areas where their development lags. Nancy Kanwisher of MIT has done some fascinating research in this area.
Okay, enough blathering for one night…
I once asked a similar question of a psychiatrist friend of mine. He smiled and replied, “Well, when you get right down to it, *everthing* is neurological, isn’t it?”
I think the objection that many of us who are autistic have is exactly what you said. The labels using “disorder” indeed “sound judgmental and a bit demeaning.” More than a bit, I might add. And to no good purpose. In fact, I think it leads to counterproductive thinking; about how to “fix” someone rather than acknowledge simply that they are different and that this presents challenges in how to deal with an alien world.
While your idea about some DSM conditions fading into normality may have some justification, I fear that way of thinking is harmful when considering autism and related conditions (schizophrenia, bipolar, dyslexia, etc.), which arise from a very different neural structure. I have participated in some studies at Beth Israel which have found stunning differences in brain function with respect to things such as plasticity. The distributions of test results of the autistic and control groups were so markedly different there was almost no overlap in the observations. This gives (me) some hope that there may be simple tests that can be developed to identify brains that might be autistic.
Including autism in the DSM also implies to many, if not most, that autism is “treatable” or (shudder) that there is a “cure.” This is terribly harmful. Awareness of autism is a huge gift, I work with neuroexceptional couples (usually one partner is neurotypical and the other is not), and a simple understanding of how very differently their brains work and perceive the world can provide huge relief and assistance to both partners. We nee understanding, acceptance, and celebration, not “treatment!”
A sample of some of my commentary on related issues: http://www.mfw.us/blog/2012/12/02/neurobabble-and-all-that/
Michael-
Thanks for you thoughtful comment. You and I are almost entirely on the same page. I have little doubt that someday in the not too distant future, imaging and genetic tests for Autism will become much more commonplace and will enable us to leave the DSM and all its political, paternalistic baggage behind us. In 2013, I just don’t see those techniques being viable options for enough people to enable us to abandon the methods of diagnosis that involve as much art as they do science. I’m a clinician in private practice and I don’t have anywhere near the level of clout that NIMH does so I’m not really in a position to do what they did. I suppose that when I wrote about “sucking it up” and using the DSM-5, I should have added that, while doing so, we can all continue to be thorns in the side of the APA.
Here’s a question that may sound like I already know the answer – but it’s being asked in an attempt to glean a better understanding. If, as you suggest, understanding, acceptance, and celebration, not treatment, are the goals, how can we continue to make demands of our public schools and institutions to provide funding for accommodations and additional services for kids who are on the spectrum? I’m asking this as someone who has worked with hundreds of kids on the spectrum and who continues to be blown away by their many and varied assets. It seems to me that those services, which are not cheap, are closer to treatment than they are to the other ideas you mention.
Again, very thoughtful comments. I subscribed to your blog and look forward to having a chance to really sink my teeth into your writings.
Bruce
Bruce, I appreciate your following up on my comments. As may be obvious to you, I’m not trained in this field. I only came to my awareness of my own autism about 8 years ago, at age 59. Also, I have no clinical experience, nor any firsthand knowledge of any of the programs available today for kids. I went to school before the days of Special Education.
What I do have, however, is abundant curiosity, and a willingness to blend my life experiences with what I learn from reading, talking with clinicians and academics, and attending programs. I know that in some contexts, my perspective has helped people (talking with parents, working with neuroexceptional couples in support groups, for example). But I’m also aware that a little knowledge can be a dangerous thing. Offsetting that, I hope, is some wisdom that comes with living for a long time.
I agree with you that, for now, we can’t replace the current “methods of diagnosis that involve as much art as they do science.” One of my self-appointed projects is to come up with a list of characteristics that I think help identify thinking and behavior patterns of autistic people that are more robust that the simple (and simplistic) checklist in the DSM. Many of my in-person and on-line conversations with other autistic people confirm for me that there are many “tells” (as poker players call them) that reveal to us who are kindred spirits. These can be simple things like sensory reactions or more complex behaviors like not being particularly fussed with consequences. Some of these things are simply amusing, some are frustrating, and some are painfully obstructive.
And, of course, I should hasten to add, not everyone experiences the world in the same way. Those who are alexithymic, for example, are going to have difficulty with empathy, but that has nothing to do with their autism.
http://www.mfw.us/blog/2013/03/22/empathy-as-a-form-of-communication/
To address your query, “If, as you suggest, understanding, acceptance, and celebration, not treatment, are the goals, how can we continue to make demands of our public schools and institutions to provide funding for accommodations and additional services for kids who are on the spectrum?” — leaving aside my objection to the euphemism “spectrum” (a topic for another time), we may be dealing with more semantics here than real issues. With the “understanding” part comes a knowledge that kids (and adults, too, believe me!) need help making their way in a world that does not make intuitive sense. I don’t like the word “treatment” because it evokes the medical (disease) model, but you can do the same things you are doing and call them something friendlier. Remediation is a word used by some.
With “acceptance,” moreover, comes a realization that it isn’t helpful to [sorry for the shopworn phrase] “pound a square peg into a round hole.” Our objective should not be to “makeover” people but to improve their ability to accomplish what they want. This involves two-way understanding. Granted, the largest burden falls on the minority, but there should be an effort to make accommodations, not just to modify “non-normal” behavior.
I would love to have a conversations sometime about your work, because I have many questions about dealing with young people. I worry that sometimes we just don’t give autistic kids time to catch up in areas where their development lags. Nancy Kanwisher of MIT has done some fascinating research in this area.
Okay, enough blathering for one night…