Two weeks ago the Trustees of the American Psychiatric Association made the serious mistake of approving and rushing to press a DSM-5 that has many unsafe and untested suggestions.
The reaction has been unexpectedly heated: dozens of extremely negative news stories, many highly critical blogs, and a number of calls for a DSM-5 boycott in the US, England, France, Australia, Spain and Italy.
I have since written two blogs. The first ‘DSM-5 Is Guide Not Bible: Ignore Its Ten Worst Changes’ outlined the reasons why DSM-5 has failed so badly and warned clinicians and the public about the worst dangers it will pose.
The blog must have touched a raw nerve. Despite the fact that I don’t know how to Twitter or Facebook or do whatever it is people do to promote a blog, this one has received 100,000 hits on Psychology Today and was also a most popular view on Huffington Post. This level of concern is not because I am that good a writer — it is all because DSM-5 is that bad. The 10 worst changes all flunk the simple common sense test. Only the highly specialized DSM-5 experts (wearing blinders to possible unintended consequences) could have come up with this rogues’ gallery of risky diagnostic suggestions.
It turned out that I had made one serious omission. Many respondents to my first blog noted that I had left out another DSM-5 change that deserved to be at, or near, the top of the list of its bad ideas. Suzy Chapman has eloquently summarized how the DSM-5 criteria set for Somatic Symptom Disorder is wildly over-inclusive and the harms that result.
DSM-5 would turn a significant proportion of medically ill people into psychiatric patients — somewhere between about 15 percent to 25 percent, depending on the disease. Most of the time, the diagnosis of mental disorder will be incorrect and harmful. Beyond the stigma and hurt, encouraging the quick and mistaken reflex that physical symptoms are really just psychiatric is a big mistake, leading both to missing the underlying medical cause and to overtreating the trumped-up psychiatric problem.
We are at the eleventh hour. Is there a last minute way for DSM-5 to restore some of its lost credibility and save itself from the widespread rejection and ridicule that is being expressed by clinicians, the public, and the press? A great deal of irrevocable damage has been done, but I have four simple suggestions that would help reduce the harm done by DSM-5 and demonstrate that APA has regained its integrity.
Although the Trustees approved the broad outlines of DSM-5, they did not settle the final wordings. The last-minute editing of DSM-5 can improve it significantly. Four simple steps:
1) The placement of a black box warning in the text section of each of the dozen or so most controversial changes (eg temper dysregulation, grief, minor neurocognitive, adult ADD, somatic, binge eating, behavioral addictions, etc.). These would indicate the risks involved, tips on how to avoid over diagnosis, and an admission that the change is a hypothesis to be tested in a living DSM-5 document.
2) Criteria sets should have a thorough final review to tighten them and remove ambiguities. If the Somatic Symptom Disorder has gotten this far in such a sorry state, it is likely that many other DSM-5 criteria sets also cry out for careful editing.
3) All the texts and criteria sets need a thorough forensic review. If any word in DSM-5 can possibly be twisted in court, it will be.
4) A surveillance mechanism with staff, funding, and teeth should be set up to identify and counteract any DSM-5 changes that lead to the fads and excessive treatments I have been warning about.
I know that it is late in the game and that these are band-aids to salvage a failed process. They can only reduce, not totally eliminate, the risks of DSM-5 — but together would constitute a big step forward.
APA will argue that there is no time. This makes no sense. Everything is happening now, at what seems the last minute, only because DSM-5 has previously missed every deadline. And the May publication date has been set arbitrarily only to meet the APA budget projections — there is no reason (except financial) that it can’t be delayed a few months to allow APA time to produce a safer DSM-5. APA is on the spot. It needs to choose between publishing profits and public trust.
I believe that radical damage control is in APA’s own best long-term interest. Publishing a third-rate DSM-5 will lose it the support of the field and also risk APA’s continuing control of the DSM franchise.
On a personal note, it would be great for me if APA were to provide its own realistic cautions concerning changes that the DSM-5 leaders have already acknowledged are only poorly tested hypotheses. If APA takes on what should be its own appropriate responsibility, then I can relinquish my unpleasant role as constant prophet of DSM-5 doom.
The sad truth is that all my dire predictions during the past three and one half years have turned out to seriously underestimate the degree to which DSM-5 could get itself into, and cause, mischief. My final prediction: Unless APA takes the time to tighten DSM-5 and provide it with appropriate cautions, DSM-5 sales will be less than half what is projected. DSM-5 will likely be a financial as well as a clinical, scientific and artistic flop. APA has one last act to save DSM-5 before the curtain drops.
Many readers of my previous blog listing the ten worst suggestions in DSM-5 were shocked that I failed to mention an eleventh dangerous mistake — that DSM-5 will harm people who are medically ill by mislabeling their medical problems as mental disorder. They are absolutely right. I apologize for my previous failure to attend to this danger and hope it is not now too late to influence the process.
Adding to the woes of the medically ill could be one of the biggest problems caused by DSM-5. It will do this in two ways: 1) by encouraging a quick jump to the erroneous conclusion that someone’s physical symptoms are “all in the head”; and 2) by mislabeling as mental disorders what are really just the normal emotional reactions that people understandably have in response to a medical illness.
UK health advocate Suzy Chapman has closely monitored every step in the development of DSM-5. Her website is the best available resource for finding just about everything you need to know about DSM-5 and ICD-11. Ms Chapman sent me a troubling email that summarizes where DSM-5 has gone wrong and the many harmful consequences that will follow. More details are available at: ‘Somatic Symptom Disorder could capture millions more under mental health diagnosis.’
Ms. Chapman writes:
“The DSM-5 Somatic Symptom Disorders Work Group is planning to eliminate several little used DSM-IV Somatoform Disorders and replace them instead with an extremely broad new category that is likely to be wildly overused (‘Somatic Symptom Disorder’ — SSD).
“A person will meet the criteria for SSD by reporting just one bodily symptom that is distressing and/or disruptive to daily life and having just one of the following three reactions to it that persist for at least six months: 1) ‘disproportionate’ thoughts about the seriousness of their symptom(s); or 2) a high level of anxiety about their health; or, 3) devoting excessive time and energy to symptoms or health concerns.
“Unless DSM-5 changes these incredibly over inclusive criteria, it will greatly increase the rates of diagnosis of mental disorders in the medically ill — whether they have established diseases (like diabetes, coronary disease or cancer) or have unexplained medical conditions that so far have presented with somatic symptoms of unclear etiology.
“The diagnosis of mental disorder will be based solely on the clinician’s subjective and fallible judgment that the patient’s life has become ‘subsumed’ with health concerns and preoccupations, or that the response to distressing somatic symptoms is ‘excessive’ or ‘disproportionate,’ or that the coping strategies to deal with the symptom are
‘maladaptive’.
“These are inherently unreliable and untrustworthy judgments that will open the floodgates to the overdiagnosis of mental disorder and promote the missed diagnosis of medical disorder.
“The DSM-5 Work Group is taking a flying leap into the unknown. There are no published research data on the likely prevalence rates, clinical characteristics or treatment of ‘Somatic Symptom Disorder,’ or its validity and safety as a construct. Decisions to code or not to code will hang on the arbitrary and subjective perceptions of DSM end-users who often spend very little time with the patient and lack training in psychiatry.
“The DSM-5 field trials produced results that should have scared off the Work Group. One in six cancer and coronary disease patients met the criteria for DSM-5 ‘Somatic Symptom Disorder.’ Do we really want to burden and stigmatize seriously ill people with an additional diagnosis of mental illness, just because they are worried about being sick and are vigilant about their symptoms? Might patients with life threatening diseases become reluctant to report new symptoms that might be early indicators of recurrence, metastasis or secondary disease — for fear of attracting a diagnosis of ‘SSD’?
“The Work Group is not proposing to classify Chronic Fatigue Syndrome, Irritable Bowel Syndrome, and Fibromyalgia within the DSM-5 ‘Somatic Symptom Disorders’ section, but these patients and others with conditions like chronic Lyme disease, interstitial cystitis, Gulf War illness and chemical injury will now become particularly vulnerable to misdiagnosis with a DSM-5 mental health disorder. In the field trials, more than one in four of the irritable bowel and chronic widespread pain patients who comprised the ‘functional somatic’ study group were coded for ‘Somatic Symptom Disorder.’
“To meet requirements for Somatization Disorder (300.81) in DSM-IV, a considerably more rigorous criteria set needed to be fulfilled. There had to be a history of many medically unexplained symptoms before the age of thirty, resulting in treatment sought or psychosocial impairment. The diagnostic threshold was set high — a total of eight or more medically unexplained symptoms from four, specified symptom groups, with at least four pain and two gastrointestinal symptoms.
“In DSM-5, the requirement of eight symptoms is dropped to just one. And the requirement of ‘medically unexplained’ symptoms is replaced by much looser and more subjective ‘excessive thoughts, behaviors and feelings’ and the clinician’s perception of “dysfunctional illness belief’ or ‘excessive preoccupation’ with the bodily symptom.
“That, and a duration of at least six months, is all that is required to tick the box for a bolt-on diagnosis of a mental health disorder — Colorectal cancer + SSD; Angina + SSD; Type 2 diabetes + SSD; IBS + SSD.
“I would like to put to Dr Dimsdale: what percentage increase in mental health diagnoses across the entire disease spectrum is estimated to result from implementation of his group’s ad hoc proposals and has he also considered the increased costs to US health care providers and payers?”
“Incautious, inept misapplication of these highly subjective and catch-all criteria will likely result in frequent inappropriate psychiatric diagnosis with far-reaching implications for both the health care industry and diverse patient populations. Harms include:
• Stigma
• Missed diagnoses through failure to investigate new or worsening somatic symptoms.
• Patients will be prescribed inappropriate psychotropic drugs with consequent side effects, complications, and costs.
• There may be limits imposed on the types of medical tests and treatments offered for patients misdiagnosed as having a mental disorder.
• Misdiagnosed patients may be disadvantaged
in employment, medical and disability reimbursement.
• An additional diagnosis of ‘SSD’ in a patient’s medical history may negatively influence decisions made by agencies involved with social and medical services, disability adaptations, education and workplace accommodations.
• An inaccurate SSD diagnosis will skew the person’s view of herself and her illness and perceptions of family and friends.
• In multi-system diseases like Multiple Sclerosis, Behçet’s syndrome or Systemic lupus, it can take several years before a diagnosis is arrived at. In the meantime, patients with chronic, multiple somatic symptoms who are still waiting for a diagnosis would be vulnerable to misdiagnosis as psychiatrically ill.
• DSM-5 allows for a diagnosis of ‘Somatic Symptom Disorder’ when a parent is considered ‘excessively concerned’ about a child’s symptoms. Families caring for children with any chronic illness may be placed at risk of wrongful accusation of ‘over-involvement’ with their child’s symptomatology or of encouraging ‘sick role behavior.’ By what means will a practitioner accurately assess an individual’s response to illness within the context of the patient’s personal, family and economic circumstances and reliably determine what might be considered ‘excessive preoccupation’ versus a positive coping strategy for that patient and family?
• The burden of the DSM-5 changes will fall particularly heavily upon women who are more likely to be casually dismissed when presenting with physical symptoms and much more likely to receive inappropriate antidepressants and anti anxiety medications for them.
“The Work Group is well aware that patients, families, caregivers and advocacy organizations are strongly opposed to the DSM-5 changes. During the second DSM-5 public review, the ‘Somatic Symptom Disorders’ proposals attracted more responses than almost any other category.
“At the APA’s 2012 Annual Meeting, Work Group Chair, Joel Dimsdale, MD, admitted his committee has struggled from the outset with the ‘SSD’ criteria set. But rather than revising in favor of less inclusive requirements or subjecting the entire section to independent, external scientific review, the Work Group’s puzzling response has been to lower the threshold even further from ‘at least two from the B type criteria’ to ‘at least one’ — placing even more medical patients at grave risk of attracting an inappropriate mental health diagnosis.
“Despite the APA Trustees signing off on DSM-5, work on specific wording is still not complete. Psychiatric and non psychiatric clinicians, primary care practitioners and specialists, allied health professionals, psychologists, counselors, social workers, medical lawyers and patient advocacy organizations all need to look very hard and quickly at these proposals, consider their safety and the implications of an additional diagnosis of ‘SSD’, and weigh in vigorously to the Work Group Chair with a call for urgent revision of this section... while there is still time.”
Ms. Chapman has provided a devastating and compelling critique. It is crucial that DSM-5 tighten its over-inclusive wording to prevent what could otherwise be the wholesale dismissal of real medical symptoms as psychiatric illness — leading to missed diagnoses, incorrect treatment, stigma, and patients understandably feeling greatly misunderstood.
I first became personally and painfully aware of the risks of misdiagnosis of somatic symptoms when, as a new psychiatric resident, I treated a man for depression for two months before discovering that his problems were in fact caused by the brain tumor I had previously missed.
The golden rule: an underlying medical illness or medication side effect has to be ruled out before ever deciding that someone’s symptoms are caused by mental disorder. And the underlying medical illness may take time to declare itself. Uncertainty is hard to live with, but much better than jumping to false and risky conclusions.
The boundary between medical and psychiatric illness is inherently difficult to draw, especially since many psychiatric disorders do present with prominent somatic symptoms that are often mistaken for medical illness. Best example — people with panic attacks often get far too many medical tests for the dizziness, shortness of breath, and palpitations that are really just part of the hyperventilation caused by the panic attack. And the emotional distress some people have in reaction to real or feared illness does sometimes get out of all proportion enough to require psychiatric attention.
But there are serious risks attached to over-psychologizing somatic symptoms and mislabeling the normal reactions to being sick- especially when the judgments are based on vague wording that can’t possibly lead to reliable diagnosis. DSM-5 as it now stands will add to the suffering of those already burdened with all the cares of having a medical illness.
DSM-5 must emphasize that physical symptoms deserve the respect of a thorough work-up before assuming their cause is psychiatric. And people with defined medical illnesses should not be casually mislabeled as also mentally ill just because they are upset about being sick.
There is a possible solution to the problems we have identified. Somatic Symptom Disorder should be removed from the main body of DSM-5 that is meant to describe the various mental disorders. Instead, unexplained physical symptoms or problematic responses to illness should be covered in the V Code section of the manual that includes Other Conditions That May Be A Focus Of Clinical Attention. This would remove the stigma and risks of mislabeling somatic concerns as mental disorders, while still providing clinicians with a code to describe the presentation. Second best solution- tighten the wording of the criteria set to make it less wildly over inclusive. As Ms Chapman points out, time is running out because DSM-5 is being rushed to press half baked.
This is the saddest moment in my 45-year career of studying, practicing and teaching psychiatry. The Board of Trustees of the American Psychiatric Association has given its final approval to a deeply flawed DSM-5 containing many changes that seem clearly unsafe and scientifically unsound. My best advice to clinicians, to the press and to the general public — be skeptical and don't follow DSM-5 blindly down a road likely to lead to massive over-diagnosis and harmful over-medication. Just ignore the ten changes that make no sense.
Some brief background: DSM-5 got off to a bad start and was never able to establish sure footing. Its leaders initially articulated a premature and unrealizable goal — to produce a paradigm shift in psychiatry. Excessive ambition combined with disorganized execution led inevitably to many ill conceived and risky proposals.
These were vigorously opposed. More than fifty mental health professional associations petitioned for an outside review of DSM-5 to provide an independent judgment of its supporting evidence and to evaluate the balance between its risks and benefits. Professional journals, the press and the public also weighed in — expressing widespread astonishment about decisions that sometimes seemed not only to lack scientific support but also to defy common sense.
DSM-5 has neither been able to self-correct nor willing to heed the advice of outsiders. It has instead created a mostly closed shop — circling the wagons and deaf to the repeated and widespread warnings that it would lead to massive misdiagnosis. Fortunately, some of its most egregiously risky and unsupportable proposals were eventually dropped under great external pressure (most notably 'psychosis risk', mixed anxiety/depression, internet and sex addiction, rape as a mental disorder, 'hebephilia', cumbersome personality ratings, and sharply lowered thresholds for many existing disorders). But APA stubbornly refused to sponsor any independent review and has given final approval to the ten reckless and untested ideas that are summarized below.
The history of psychiatry is littered with fad diagnoses that in retrospect did far more harm than good. Yesterday's APA approval makes it likely that DSM-5 will start a half dozen or more new fads which will be detrimental to the misdiagnosed individuals and costly to our society.
The motives of the people working on DSM-5 have often been questioned. They have been accused of having a financial conflict of interest because some have (minimal) drug company ties and also because so many of the DSM-5 changes will enhance Pharma profits by adding to our already existing societal overdose of carelessly prescribed psychiatric medicine. But I know the people working on DSM-5 and know this charge to be both unfair and untrue. Indeed, they have made some very bad decisions, but they did so with pure hearts and not because they wanted to help the drug companies. Theirs is an intellectual, not financial, conflict of interest that results from the natural tendency of highly specialized experts to overvalue their pet ideas, to want to expand their own areas of research interest and to be oblivious to the distortions that occur in translating DSM-5 to real life clinical practice (particularly in primary care where 80 percent of psychiatric drugs are prescribed).
The APA's deep dependence on the publishing profits generated by the DSM-5 business enterprise creates a far less pure motivation. There is an inherent and influential conflict of interest between the DSM-5 public trust and DSM-5 as a bestseller. When its deadlines were consistently missed due to poor planning and disorganized implementation, APA chose quietly to cancel the DSM-5 field testing step that was meant to provide it with a badly needed opportunity for quality control. The current draft has been approved and is now being rushed prematurely to press with incomplete field-testing for one reason only — so that DSM-5 publishing profits can fill the big hole in APA's projected budget and return dividends on the exorbitant cost of 25 million dollars that has been charged to DSM-5 preparation.
This is no way to prepare or to approve a diagnostic system. Psychiatric diagnosis has become too important in selecting treatments, determining eligibility for benefits and services, allocating resources, guiding legal judgments, creating stigma and influencing personal expectations to be left in the hands of an APA that has proven itself incapable of producing a safe, sound and widely accepted manual.
New diagnoses in psychiatry are more dangerous than new drugs because they influence whether or not millions of people are placed on drugs — often by primary care doctors after brief visits. Before their introduction, new diagnoses deserve the same level of attention to safety that we devote to new drugs. APA is not competent to do this.
So, here is my list of DSM-5's ten most potentially harmful changes. I would suggest that clinicians not follow these at all (or, at the very least, use them with extreme caution and attention to their risks); that potential patients be deeply skeptical, especially if the proposed diagnosis is being used as a rationale for prescribing medication for you or for your child; and that payers question whether some of these are suitable for reimbursement. My goal is to minimize the harm that may otherwise be done by unnecessary obedience to unwise and arbitrary DSM-5 decisions.
1) Disruptive Mood Dysregulation Disorder: DSM-5 will turn temper tantrums into a mental disorder — a puzzling decision based on the work of only one research group. We have no idea whatever how this untested new diagnosis will play out in real life practice settings, but my fear is that it will exacerbate, not relieve, the already excessive and inappropriate use of medication in young children. During the past two decades, child psychiatry has already provoked three fads: a tripling of Attention Deficit Disorder, a more than twenty-times increase in Autistic Disorder, and a forty-times increase in childhood Bipolar Disorder. The field should have felt chastened by this sorry track record and should engage itself now in the crucial task of educating practitioners and the public about the difficulty of accurately diagnosing children and the risks of over-medicating them. DSM-5 should not be adding a new disorder likely to result in a new fad and even more inappropriate medication use in vulnerable children.
2) Normal grief will become Major Depressive Disorder, thus medicalizing and trivializing our expectable and necessary emotional reactions to the loss of a loved one and substituting pills and superficial medical rituals for the deep consolations of family, friends, religion, the resiliency that comes with time and the acceptance of the limitations of life.
3) The everyday forgetting characteristic of old age will now be misdiagnosed as Minor Neurocognitive Disorder, creating a huge false positive population of people who are not at special risk for dementia. Since there is no effective treatment for this 'condition' (or for dementia), the label provides absolutely no benefit (while creating great anxiety) even for those at true risk for later developing dementia. It is a dead loss for the many who will be mislabeled.
4) DSM-5 will likely trigger a fad of Adult Attention Deficit Disorder diagnoses leading to widespread misuse of stimulant drugs for performance enhancement and recreation and contributing to the already large illegal secondary market in diverted prescription drugs.
5) Excessive eating 12 times in 3 months is no longer just a manifestation of gluttony and the easy availability of really great tasting food. DSM-5 has instead turned it into a psychiatric illness called Binge Eating Disorder.
6) The changes in the DSM-5 definition of Autism will result in lowered rates — 10 percent according to estimates by the DSM-5 work group, perhaps 50 percent according to outside research groups. This reduction can be seen as beneficial in the sense that the diagnosis of Autism will be more accurate and specific — but advocates understandably fear a disruption in needed school services. Here the DSM-5 problem is not so much a bad decision, but the misleading promises that it will have no impact on rates of disorder or of service delivery. School services should be tied more to educational need, less to a controversial psychiatric diagnosis created for clinical (not educational) purposes and whose rate is so sensitive to small changes in definition and assessment.
7) First time substance abusers will be lumped in definitionally in with hard-core addicts despite their very different treatment needs and prognosis and the stigma this will cause.
8) DSM-5 has created a slippery slope by introducing the concept of Behavioral Addictions that eventually can spread to make a mental disorder of everything we like to do a lot. Watch out for careless over-diagnosis of internet and sex addiction and the development of lucrative treatment programs to exploit these new markets.
9) DSM-5 obscures the already fuzzy boundary between Generalized Anxiety Disorder and the worries of everyday life. Small changes in definition can create millions of anxious new 'patients' and expand the already widespread practice of inappropriately prescribing addicting anti-anxiety medications.
10) DSM-5 has opened the gate even further to the already existing problem of misdiagnosis of Post-Traumatic Stress Disorder in forensic settings.
DSM-5 has dropped its pretension to being a paradigm shift in psychiatric diagnosis and instead (in a dramatic 180 degree turn) now makes the equally misleading claim that it is a conservative document that will have minimal impact on the rates of psychiatric diagnoses and in the consequent provision of inappropriate treatment. This is an untenable claim that DSM-5 cannot possibly support because, for completely unfathomable reasons, it never took the simple and inexpensive step of actually studying the impact of DSM on rates in real-world settings.
Except for autism, all the DSM-5 changes loosen diagnosis and threaten to turn our current diagnostic inflation into diagnostic hyperinflation. Painful experience with previous DSM's teaches that if anything in the diagnostic system can be misused and turned into a fad, it will be. Many millions of people with normal grief, gluttony, distractibility, worries, reactions to stress, childhood temper tantrums, forgetfulness in old age and 'behavioral addictions' will soon be mislabeled as psychiatrically sick and given inappropriate treatment.
People with real psychiatric problems that can be reliably diagnosed and effectively treated are already badly shortchanged. DSM-5 will make this worse by diverting attention and scarce resources away from the really ill and toward people with the everyday problems of life who will be harmed, not helped, when they are mislabeled as mentally ill.
Our patients deserve better, society deserves better and the mental health professions deserve better. Caring for the mentally ill is a noble and effective profession. But we have to know our limits and stay within them.
DSM-5 violates the most sacred (and most frequently ignored) tenet in medicine: First, do no harm. That is why this is such a sad moment.
There has been a heated controversy about the DSM-5 proposal to redefine autism. Will its dramatic changes in definition result in dramatic changes in who gets diagnosed and will this cause a big reduction in the overall rate of autism? The DSM-5 folks claim their changes will have minimal impact. My prediction has been that they will have a major impact.
Dr. Lynn Waterhouse, an autism researcher for more than 30 years, has weighed in on the issue in her recently published book, “Rethinking Autism: Variation and Complexity.” Dr. Waterhouse believes the DSM-5 criteria are seriously flawed and will reduce the number of diagnoses. She sent this email:
“Dr. Catherine Lord, head of the DSM-5 autism group, recently cited a data analysis she performed as conclusive evidence that DSM-5 criteria for Autism Spectrum Disorder (ASD) will 'not change the number of children with clinical diagnoses.'"
I disagree. First off, Dr. Lord did find that using the new DSM-5 criteria caused about a 10 percent reduction in ASD diagnoses. That’s a lot of kids who will no longer qualify for the diagnosis and who will not get services.
And Dr. Lord’s 10 percent estimate is almost certainly way too low because two of her study’s three data sets were not really representative of the typical children assessed for ASD. It is a very good bet that her results won’t generalize very accurately to real world settings where a much larger percentage of kids would lose the diagnosis.
Other (admittedly smaller) studies tell a radically different story — one that should inspire a lot more caution in the DSM-5 group than it has. Mattila found only 46 percent of those given a DSM-IV diagnosis met criteria for DSM-5 ASD. Taheri and Perry found only 63 percent of DSM-IV patients met DSM-5 criteria. And McPartland found only 60 percent diagnosed with ASD under DSM-IV would get a DSM-5 ASD diagnosis.
These studies all suggest that, contrary to Dr. Lord’s assertion, DSM-5 will likely have a radical impact on autism diagnosis and qualification for school and mental health services.
The DSM-5 criteria define ASD with two core symptoms: (1) global impairment in social communication and social interaction not accounted for by developmental delay; and, (2) a restricted, repetitive pattern of behavior, interests, or activities.
Worley and Matson compared 78 children given a DSM-5 ASD diagnosis with 52 children who met DSM-IV but not DSM-5 ASD criteria. Surprisingly, they found no significant differences in overall autism symptoms between the two groups. Mandy found that 64 of 66 individuals with a DSM-IV diagnosis of Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) would be excluded from a DSM-5 ASD diagnosis because none of the 64 met the second DSM-5 criteria — restricted repetitive behaviors, interests, or activities — even though all 64 had global impairment in social communication and social interaction. Mayes, Black and Tierney found only 27 percent of children with PDDNOS were identified as having ASD with the DSM-5 criteria.
These and other independent research groups have reported that DSM-5 ASD criteria will significantly reduce the number of ASD diagnoses. Their findings counter Dr. Lord’s claim that DSM-5 ASD criteria will not change the number of people diagnosed. Because nearly all of those excluded from a DSM-5 diagnosis have serious developmental social interaction impairment, they cannot be correctly diagnosed by any of the other DSM-5 childhood disorders, such as Social Communication Disorder or Intellectual Developmental Disorder. These children will need services that will be more difficult to obtain without a DSM-5 diagnosis. Unfortunately, the DSM-5 group has chosen to simply ignore data that don’t conform with its beliefs.
Thanks, Dr Waterhouse. The DSM-5 autism group has been blinded by an intellectual conflict of interest. Eager to introduce its concept of an autism spectrum, the group somehow lost sight of a crucial and obvious fact — its proposed criteria set is written so exclusively that it must inevitably reduce the diagnosis of autism.
I personally believe that autism is currently being over diagnosed because it has been too closely coupled to school services. I am all for providing needed school services but am very much against flawed and sloppy psychiatric diagnosis. We should as a society get kids the services they need without tagging many of them with an inaccurate diagnosis that can sometimes haunt their lives with a stigmatizing and damaging (mis)label.
But I don’t think the needed reduction of rates should come from a mistake in DSM-5 criteria writing or the over valuation of one study that has been conducted by the person who is most responsible for recommending the change. This question is clearly far too important to be left to a very small group of biased experts who ignore contrary data and opinion. It deserves the kind of independent scientific review that was requested by 51 mental health associations, but denied by the APA. Changes this big should not be based on the beliefs of a few using data that is so contested.
References:
Huerta, M., Bishop, S., Duncan, A., Hus, V., & Lord, C. (2012). Application of DSM-5 criteria for autism spectrum disorder to three samples of children with DSM-IV diagnoses of pervasive developmental disorders. American Journal of Psychiatry, 169, 1056–1064.
Kupfer, D. J., & Regier, D. A. (2011). Neuroscience, clinical evidence, and the future of psychiatric classification in DSM-5. American Journal of Psyc
hiatry,
168, 672–674.
Mandy, W. P. L., Charman, T., & Skuse, D. (2012). Testing the construct validity of proposed DSM-5 criteria for autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 51, 41–50.
Mattila, M. L. et al. (2011). Autism spectrum disorders according to DSM-IV-TR and comparison with DSM-5 draft criteria: an epidemiological study. Journal of the American Academy of Child and Adolescent Psychiatry, 50, 583–592.
Mayes, S. D., Black, A., & Tierney, C. D. (2013). DSM-5 under-identifies PDDNOS: Diagnostic agreement between the DSM-5, DSM-IV, and Checklist for Autism Spectrum Disorder. Research in Autism Spectrum Disorders, 7, 298-306.
McPartland, J. C., Reichow, B., & Volkmar, F. R. (2012). Sensitivity and specificity of proposed DSM-5 diagnostic criteria for autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 51, 368–383.
Taheri, A., & Perry, A. (2012). Exploring the proposed DSM-5 criteria in a clinical sample. Journal of Autism and Developmental Disorders, 42, 1810-1817.
Worley, J. A. & Matson, J. L. (2012). Comparing symptoms of autism spectrum disorders using the current DSM-IVTR diagnostic criteria and the proposed DSM-5 diagnostic criteria. Research in Autism Spectrum Disorders, 6, 965-970.
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