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DSM Committee Takes Heat Over ‘Mental Retardation’ Update

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As experts behind a forthcoming update of the Diagnostic and Statistical Manual of Mental Disorders look to revise psychiatry’s definition of “mental retardation” their efforts are becoming unexpectedly contentious.

Under a draft that’s currently open for public comment, experts working with the American Psychiatric Association are proposing that the name of the diagnosis be changed to “intellectual developmental disorder.”

What’s more, they’re looking to give more discretion to clinicians by putting less emphasis on IQ. While people qualifying for the diagnosis would still be required to score at least two standard deviations below average on such assessments, there would no longer be a bright-line IQ requirement of 70 or under.

The changes are bringing significant backlash from two of the most established organizations in the country advocating for those with intellectual disabilities — the American Association on Intellectual and Developmental Disabilities and The Arc.

Both groups object to the name change arguing that the psychiatric profession should follow the federal government and most other entities in adopting the term “intellectual disability.” The groups say that using a different phrase in clinical settings would do nothing more than confuse people.

“I think there’s a great deal of shared concern on this disorder and the way it’s being conceptualized in the DSM-5,” said Margaret Nygren, executive director of the American Association on Intellectual and Developmental Disabilities.

Beyond the name, Nygren says the proposal diverges widely from the existing diagnosis criteria currently endorsed by the American Psychiatric Association, which has always been closely aligned with a definition produced by her own group.

Nygren says the lack of specificity in the proposed diagnosis with regard to testing for IQ and adaptive functioning is troubling. She also believes that there should be a finite age by which symptoms of the disorder manifest. Currently the DSM requires that individuals meet the criteria for “mental retardation” prior to age 18, but the draft changes would ease that requirement indicating that symptoms must originate “during the developmental period.”

“This decision will have a great impact on our community,” said Peter Berns, CEO of The Arc, which plans to submit comments to the psychiatric association expressing concerns similar to those of Nygren’s group.

The proposed changes remain a work in progress, according to James Harris, a professor of psychiatry and pediatrics at the Johns Hopkins University School of Medicine who is a member of the American Psychiatric Association work group responsible for updating the “mental retardation” diagnosis.

However, Harris said one aspect driving the committee’s proposal is a desire to align its criteria with an upcoming revision of the International Classification of Diseases, or ICD, a guide to diseases and disorders published by the World Health Organization.

ICD plans to use “intellectual developmental disorder” in it’s eleventh version, which is expected in 2015. Despite significant debate within the DSM committee, Harris says they determined that the term favored by ICD more accurately describes the condition for clinical purposes as compared to “intellectual disability” which puts an emphasis on functioning level.

What’s more, though IQ tests would still be required under the proposed changes, the medical groups are looking to move away from a reliance on scores alone to determine a diagnosis.

“There is only one diagnosis that’s based on a test,” Harris says, referring to the current standard for the “mental retardation” label. “All the other diagnoses are based on people. We want to focus on the person, not the number.”

Changes to the “mental retardation” diagnosis are not the only ones yielding controversy. Many disability advocates have also expressed concerns about proposed alterations to the definition of autism after some studies suggested that many currently diagnosed with the disorder may no longer qualify under the new criteria.

The proposed changes call for folding autistic disorder, Asperger’s syndrome, childhood disintegrative disorder and pervasive developmental disorder, not otherwise specified under one umbrella diagnosis of “autism spectrum disorders,” with diagnosticians indicating a level of severity associated with an individual’s condition.

The American Psychiatric Association is accepting public comment through June 15 on proposed changes for the fifth edition of the DSM. Then, work groups tasked with revising the psychiatric manual are expected to make final recommendations to the organization’s board in December. Publication of the manual is anticipated in May 2013.

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Comments (7 Responses)

  1. Patricia Elaine Chandler says:

    Boycott the proposal and take this fight to Washington, DC. NOW! That is the only way Juctice will be served. I will not have the last 48 years of My Life negated and done away with by the say so of a few Ignorant, Under-educated, Un-Caring, and Un-FEELING Men on the DSM Committee. They don’t have to take care of me or the millions of Others like Me. Then, Who Will? ICD-9 Coding is about $$$$$ and Insurance Coverage is about $$$$$ and That is what This Is Really About! I worked in the Industry of Clinical Trials R&D and for a 3rd-party MAnaged Health Care Company, they KNEW I was Autistic and Used me for 23 years. They had no idea I would gain the Courageous to SPEAK One Day! I Am Growing and I Am SPEAKING NOW, for All Of Us because I have too and this is My Life and I have to Take Care of Me. No one else has and no one else will. Though, there are too many of us, Childrens and Adults who cannot cqare for themselves. Who is going to do it? The Jials, Institutions and Grave Yards??? Becasue, if the proposed DSM-V changes aee Implements, that is Where Millions of People Like ME are going to End UP! Period!

  2. Marian Helmick says:

    It is important to be properly diagnosed because treatments might vary. My Sister who is a year older than me was diagnosed with profound retardation when she was a child. over 5 years ago when I attended a care team meeting I brought info about autism to the team. They had her assessed for autism and found that she had severe autism. (She had some stemming that was similar to my son’s stemming and that’s when I decided they had to find out if it was autism.) Over the years I remember her care aides telling me that they she thought she was more intelligent than presumed, (but she can’t cooperate to be able to know by standard testing.) I think good assessments can give better direction for treatments/ therapies for all individuals.

  3. Cori Wise says:

    While I like the aspect of taking out the ‘retarded’ due to the stigma associated. By what’s stated here if ones condition is not diagnosed with in guide lines they would loose the chance for support.
    I am a parent of a child already diagnosed with Autism. Autism IS already a spectrum Disorder. I have read the DM for the proposed DX. I agree with it.

  4. Patricia Homan says:

    As the Intake Coordinator for a county board of DD it would make it much more difficult to make an eligibility determination if there are various definitions between agencies, texts, professionals for MR and autism…….we need to have a standardized definition, standardized format for testing and a common understanding to use.
    I understand that it is difficult to put people in a ‘box’ but this is what we are required to do when deciding if the person qualifies for services.

  5. Why? says:

    Why call less intelligent people names? Why do you have to call them names and put labels on them? Just leave them alone. It’s not like there is a magical way to increase their intelligence is there? There’s nothing that can be done for them, so at least stop calling them names. Just call them less intelligent than most people. That’s enough to cover it all. It’s not even a real medical problem. Some people are dumb, some smart, some average. We are all OK.

  6. Valerie says:

    There needs to be a consistent way to determine which individuals meet the criteria for mild, moderate, severe and profound cognitive disabilities to ensure those individuals are provided services. I am concerned that focusing solely on an individual without taking into consideration when the diagnosis is made, functioning levels during the formative years, could open the floodgates to a variety of individuals who never had any limitations during their formative years. Providing services to individuals who did not have any limitations/diagnosis in childhood, could greatly reduce services to those individual with the greatest needs.

  7. John Scharf says:

    Disability – the condition of being disabled

    Disorder – an abnormal physical or mental condition – ailment

    As a parent of some 27 years who has walked the path of caring for two persons who have an extra chromosome and one who lacks intellectual development due to birthing difficulties it is an insult to my intelligence to identify that Kevin and Paul have an ailment. They have a normal physical and mental condition which is related to the genetic make up of their anatomy and Paul has a normal condition related to the lack of oxygen at birth. No disorder here thus the new definition is stigmatic and offensive. Bottom line it is not a mental health issue as that infers recovery for which there is none.

    We as a society need to return to our core values and address the care of these special persons. Rather than developing definition that marginalize them as members of our society.

    For some it is difficult that they are the image and likeness of their creator. They are in that they are perfect in many ways that we are not.

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