On October 31, 2016, the very eminent psychiatrist Allen Frances, MD, architect of DSM-IV, published an article on his Psychology Today blog, Saving Normal. The article is titled DSM-5 Diagnoses In Kids Should Always Be Written In Pencil. (The piece also appeared on the Huffington Post Blog on the same date.) The subheading is “Mislabelling children and adolescents is frequent and can haunt them for life”
As in many of Dr. Frances’s recent articles, the bulk of the text is written by someone else, and Dr. Frances provides an introduction and a summary/conclusion. In this case, the core of the article is written. by Juan Vasen and Gisela Untoiglich of Forum Infancias, an Argentine organization of mental health workers dedicated to the “proper diagnosis and treatment of children and adolescents”.
The material written by Drs. Vasen and Untoiglich is basically sound, e.g. “Children and adolescents vary dramatically in the way they develop and in the chronology of their developmental milestones. Individuality and immaturity should not be confused with disease”, but there is also the implication that ADHD is a real disease entity which can be identified with careful and painstaking assessment.
“Accurate diagnosis in children and adolescents takes a great deal of time in each session and often many sessions over a number of months.”
Dr. Frances opens the article by lamenting what he describes as the “three most harmful fads in psychiatric diagnosis, during the past 20 years,” These are:
“Rates of Attention Deficit Disorder have tripled and rates of Autism and childhood Bipolar Disorder have multiplied an incredible 40 times.”
Dr. Frances goes on to write that “Powerful external factors have contributed greatly to this massive mislabelling of kids.” From the general context it is clear that what Dr. Frances calls “massive mislabeling” is not the assignment of psychiatry’s spurious labels as such, but rather what he calls the overuse of these labels.
He then takes his usual shot at pharma:
“For ADHD and kiddie Bipolar, drug companies misleadingly and aggressively sold the ill to peddle their expensive and profitable pills. Their marketing strategy was based on the cynical assumption that starting a kid early on pills might make him a customer for life.”
Dr. Frances frequently blames pharma, while ignoring the role that psychiatry, and he himself personally, played in the proliferation of psychiatry’s so-called diagnoses and the progressive relaxation of the criteria for these diagnoses. I have spelled out in an earlier post how the criteria for ADHD were markedly relaxed in Dr. Frances’s own DSM-IV.
The widespread application of the “bipolar diagnosis” to children was the brainchild of the Harvard psychiatrist Joseph Biederman, MD, but some of the groundwork for this had been laid in DSM-IV.
The earlier edition of the manual (DSM-III-R) had stated that the age of onset of manic episodes
“…is in the early 20s. However, some studies indicate that a sizable number of new cases appear after age 50.” (p 216)
The corresponding statement in DSM-IV reads:
“The mean age at onset for a first manic episode is the early 20s, but some cases start in adolescence and others start after 50 years.” (p 331) [Emphasis added]
So it was Dr. Frances’s own DSM-IV that first legitimized the notion that this so-called diagnosis could be applied to children.
Certainly, pharma played its part, but psychiatry was hand-in-glove with its generous benefactor, as it has been since the 60’s-70’s.
. . . . . . . . . . . . . . . .
“The explosion of Autism resulted from the combination of two things: the DSM-IV introduction of a much milder form (Asperger’s) and the far too close linkage of the diagnosis to eligibility for enhanced school services. DSM diagnoses developed for clinical purposes are inappropriate gatekeepers for allocating educational resources. Educational decisions should be based on the child’s educational need, as assessed by educators, using educational tools.”
The reference to Asperger’s disorder is probably accurate, and represents an honest admission on the part of Dr. Frances, but the statement:
“DSM diagnoses developed for clinical purposes are inappropriate gatekeepers for allocating educational resources. Educational decisions should be based on the child’s educational need, as assessed by educators, using educational tools.”
is extremely misleading.
The issue here is that, in general, public schools are required by federal law to make accommodation for children with disabilities. It is also required that these children be taught, not in special education settings, but rather in regular classrooms, whenever possible.
Disability is obviously a complex, and difficult-to-define concept. But for practical purposes, the Social Security Administration (SSA) has two broad criteria. Firstly, the child must have a confirmed illness; and secondly, he must have confirmed illness-related functional limitations. Both autistic disorder and attention deficit hyperactivity disorder have been accepted by the SSA as covered illnesses. Evidence of functional limitations is usually gathered from the child’s treatment providers, supplemented as needed by reports from outside consultants.
So – and this is the critical point – “DSM diagnoses” are not being used as gatekeepers for allocating educational resources. Rather, they are being used as the first stage in disability determination (i.e., the presence of illness). And it is the disability determination that in turn drives the educational decisions, and, in some cases, channels additional funding to the school.
So Dr. Frances is, in effect, lamenting the use of “DSM diagnoses” to determine the presence of psychiatric “illness”, which seems a major about-face for someone who routinely asserts the validity and usefulness of these “diagnoses” for precisely these purposes. The point is this: Once the APA invented the ADHD illness, the door was opened for this illness to become disability-eligible.
And, incidentally, the plot thickens. In 1985 the SSA contracted with the APA to conduct a major study of the standards and guidelines for the assessment of mental impairment. The study lasted two years. The APA made some minor recommendations, but “All recommendations were made on the premise that the basic construct of the SSA’s medical standards and guidelines for the evaluation of claims based on mental impairment should be retained.” [Italic emphasis in original] So whatever criticism Dr. Frances has of the present system, he needs, I suggest, to acknowledge the part his own profession played in the creation of this state of affairs.
But the plot thickens even more. Most of the details involved in the education of disabled children are set out in the Individuals with Disabilities Education Act (IDEA), 1990. When this bill was being drafted, there was considerable controversy over whether ADHD should be included as a covered “illness”. Opposition came from teacher organizations and the NAACP. The original act (1990) did not include ADHD. However, in 1991 the Department of Education issued a clarificatory memo stating that “ADHD” is a covered disability under IDEA. This amendment was the result of intensive lobbying by CHADD and others. And organized psychiatry has been a long-time supporter of CHADD. At the present time there is a downloadable document titled ADHD: Parents Medication Guide on the APA website. CHADD is mentioned five times and is recommended as a source of information. The document was prepared by the American Academy of Child and Adolescent Psychiatry and the APA.
“OVER-DIAGNOSIS”
Dr. Frances continues:
“It is long past time to tame the wild DSM over-diagnosis of kids.”
Then, after the material written by Drs. Vasen and Untoiglich:
“Thanks so much, Juan and Giselle, for poetically cautioning clinicians to be conservative, never careless or creative, in diagnosing kids. Mislabelling has serious and often longstanding consequences on how the child sees himself, how the family sees the child, and on the misuse of medication. Diagnosis should never be taken lightly.”
and
“Accurate diagnosis in kids is really tough and time consuming. Misdiagnosis in kids is really easy and can be done in 10 minutes. Accurate diagnosis in kids leads to helpful interventions that can greatly improve future life. Misdiagnosis in kids often leads to harmful medication and haunting stigma.”
and
“The stakes are high and the harms sometimes permanent. The best way to protect our children is to respect their difference and to accept uncertainty. I really love the idea of writing psychiatric diagnoses in pencil.”
This notion of conservative, careful and accurate diagnosis is a common theme in Dr. Frances’s writing, but in fact, it’s an empty exhortation, because the criteria are inherently vague and ill-defined.
Let’s consider the first criterion in the APA’s list:
1(a) “often fails to give close attention to details or makes careless mistakes in schoolwork, work, or other activities” (DSM-IV, p 83)
The DSM-5 wording is almost identical, but adds two examples: (e.g. overlooks or misses details, work is inaccurate).
To illustrate the problem, let’s imagine a conversation between two experienced psychiatrists, Dr. I. Druggem and Dr. Ak Curate.
Dr. Curate: You’re diagnosing too many children with ADHD.
Dr. Druggem: No, I’m not. I always make sure that they meet the requisite number of criterion items.
Dr. Curate: But you’re interpreting the criteria too loosely.
Dr. Druggem: You’re interpreting them too tightly.
Dr. Curate: Well consider that six-year-old boy you diagnosed last week. Which criteria did he meet?
Dr. Druggem: Inattention criteria a, b, c, d, and e. He also met four of the hyperactivity-impulsivity criteria.
Dr. Curate: So he met criterion 1(a) – “often fails to give close attention to details or makes careless mistakes in schoolwork, work, or other activities”?
Dr. Druggem: Yes, absolutely.
Dr. Curate: How do you know?
Dr. Druggem: Because I had his teacher fill out a checklist, and she checked that item.
Dr. Curate: So the teacher said that he met this criterion. Did she say how often is often?
Dr. Druggem: No, of course not.
Dr. Curate: How often is often?
Dr. Druggem: I don’t know; I suppose two or three times a day.
Dr. Curate: I think it would be perfectly normal for a six-year-old boy to make careless mistakes or lose his attention ten or even fifteen times a day.
Dr. Druggem: No way.
Dr. Curate: Yes way.
And the critical point here is that there is nothing in the DSM, or indeed in any psychiatric guideline, that can resolve this disagreement. There is no way to say which psychiatrist is correct. And the problem is compounded when we recognize that similar definitional difficulties arise when we ask what constitutes close attention versus not-so close; or careless mistakes versus other kinds of mistakes. And when we recognize that the same difficulties arise with all 18 criteria, it is clear that the term “accurate diagnosis of ADHD” is a logical absurdity. If one invents illnesses with no identifiable pathology, to be diagnosed on the basis of inherently vague checklists, the concept of true prevalence is meaningless.
So what psychiatry has created is a loose algorithm that can be expanded and contracted at will, without any blame or censure being assigned to the “diagnosing” psychiatrist. But it’s even worse than that, because this arbitrarily flexible “diagnosing” is being conducted in a context where there are enormous incentives to make the “diagnosis”, and considerable penalties for declining to “diagnose”.
First in this regard are the pharma companies whose revenue correlates with the number of children “diagnosed”. Secondly, the parents are off the hook with regards to the need to discipline or train their children effectively. Thirdly, the “diagnosis” may entitle the child (or rather his parents) to a disability income. Fourthly, the school may be eligible for additional funding. Fifthly, the psychiatrists stand a very good chance of acquiring a long-term repeat customer.
So everybody wins – except, of course, the child, who loses, especially in the long term. This is the monster that psychiatry has created. And Dr. Frances played a cardinal role.
The problem is not over-diagnosing. The problem is the spurious medicalization of problems that are not medical in nature. And this was psychiatry’s contribution to the great psychiatry-pharma hoax, which they entered with eyes wide open. The deal was simple. We (psychiatrists) invent and legitimize the illnesses, and write the prescriptions; you (pharma) send lots of money, validations, and business our way. And Dr. Frances is very knowledgeable about this matter. In 1995, he and his partners John Docherty, MD and David Kahn, MD, wrote:
“We are also committed to helping Janssen succeed in its effort to increase its market share and visibility in the payor, provider, and consumer communities.”
This was a reference to The Expert Consensus Guideline Series: Treatment of Schizophrenia produced by Drs. Frances, Docherty, and Kahn (The Journal of Clinical Psychiatry, 1996, Vol 57, Supplement 12B) with a generous grant from Johnson & Johnson (owners of Janssen). The quote is from an expert witness report by David Rothman, PhD, professor of Social Medicine at Columbia University College of Physicians and Surgeons, p 15-16. The entire issue has been covered in great depth by Paula Caplan, PhD, here, and to the best of my knowledge, Dr. Frances has never publicly acknowledged any wrongdoing or issued any apology with regards to the matter.
FINALLY
Dr. Frances was a key player in the promotion of the psychiatric hoax. As architect of DSM-IV, he had the opportunity to reverse the trend begun by Robert Spitzer, MD, with DSM-III, but instead, Dr. Frances not only stayed on the proliferation/expansionist track, but actually accelerated the pace. His present hand-wringing concerning the mislabeling and over-drugging of children is not convincing.
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ADHD is not something a child has. It is something a child does.