As I have discussed previously, a number of changes have been proposed for Tourette’s Syndrome and tic disorders in the DSM-5. I found the proposed changes problematic and wrote a commentary in The Psychiatric Times as well as sending my feedback to the DSM-5 workgroup.
Now the national Tourette Syndrome Association has issued its own statement on the proposed changes. In their statement, they address some proposed revisions that I did not address in my commentary, but in all important respects, their statement is consistent with my major concern that TS and tic disorders not be grouped under any heading such as "Anxiety and Obsessive-Compulsive Disorders." They write:
The TSA strongly recommends that Tourette’s disorder/tic disorders not be included in a section that is entitled “Anxiety and Obsessive-Compulsive Disorders”. We believe that grouping tic disorders under the rubric of anxiety and obsessive compulsive disorders is not accurate. Essentially, tic disorders are movement disorders, and thus are best represented as neurological conditions. Tic disorders are not anxiety disorders and they are sufficiently distinct from obsessive compulsive disorder to warrant not being subsumed under this category. In addition, for many years, the TSA and the broader Tourette’s disorder community, along with countless medical professionals, have worked to dispel the misleading notion that Tourette’s disorder is, at its root, a psychiatric condition. We are concerned that grouping Tourette’s disorder with “Anxiety and Obsessive-Compulsive Disorders” in DSM-5 will represent the condition solely as a psychiatric illness. This categorization would prove very confusing, would lead to renewed stigma and potential discrimination, as well as serve to reverse many years of successful advocacy on behalf of children and adults with Tourette’s disorder. Therefore, the TSA supports the retention of Tourette’s disorder in the category of “Disorders Usually First Diagnosed In infancy, Childhood or Adolescence” in the DSM-5. If this is not possible, then we suggest that tic disorders be placed under a different or newly created category that is more suitable for these neurological disorders.
You can read their entire position statement here.
The deadline for providing feedback to the DSM-5 workgroup is April 20. I would encourage everyone to let the workgroup know that the proposed change would be a step backwards for children and adults with TS.
Allen Frances, M.D. has been an outspoken critic of the DSM-5 process and draft proposal. In Psychology Today, he blogs about the proposed changes to Autism Spectrum Disorder, a topic I have blogged about here and here. Dr. Frances writes, in part:
There has been an "epidemic" of autism in the last fifteen years. This used to be a very rare condition diagnosed less than once in every two thousand kids. Now it is diagnosed once in a hundred. We will elsewhere take up the foolish theory that this was cause by vaccination. Here we will trace the real causes.
People change slowly, if at all. In contrast, fads in psychiatric diagnosis can come and go in a fast and furious fashion. The autism fad resulted from changes in DSM4 (published in 1994) interacting with a strong societal push.
There were two DSM4 contributions:1) the inclusion of a surprisingly popular new diagnosis, Asperger’s Disorder; and, 2) much less importantly, editorial revisions meant only to clarify the criteria for Autistic Disorder, but which may have inadvertently lowered the threshold for its diagnosis.
The DSM5 proposal is highly controversial both within the professional community and among the advocacy groups- with strong supporters and equally strong critics and probably about an equal weight of argument on both sides. When it comes to labelling, the heat of the argument is often a direct reflection that there are no clear right answers. The major point is to ensure that DSM5 not provoke a further misleading "epidemic" of autism. The criteria set should retain and enhance items that will reduce the risk of false positive diagnosis. Proposed changes and alternative wordings need careful field testing in nonspecialist settings to determine their likely future impact on rates. Even small wording changes can have a profound impact on who is, and who is not, diagnosed.
Ultimately, there will not ever be a clear right verdict on the DSM5 proposal to unify autistic disorders within one rubric. The scientific evidence is not overwhelming either way and is subject to different plausible interpretations. The stigma question cuts both ways. The services issues will have to be dealt with whether there is one diagnosis or two.
Read more of his commentary here.
One of the more controversial proposed changes in the DSM-V concerns eliminating Asperger’s Disorder as its own diagnosis. The rationale for the proposal is provided on the DSM-5 site, here. The proposal has met with a lot of opposition from those who call themselves "Aspies" proudly and feel that the proposal would take away their identity, reduce the likelihood of people seeking diagnosis due to the stigma of the label "autistic," make it harder for students to get necessary services in school, and overall, be a step backwards. Elizabeth Landau of CNN described some of the opposition here, and it has been discussed all over the Internet. Read more
One of the many changes proposed for the DSM-V, the diagnostic manual used by mental health professionals, is a revision of the group of disorders currently subsumed under Pervasive Developmental Disorders. In the current system in the DSM-IV-TR, there are five disorders in this group: Rett’s Disorder, Childhood Disintegrative Disorder, Autistic Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). Under the new proposal, however:
- The name for the grouping would change from Pervasive Developmental Disorders to Autism Spectrum Disorders.
- Rett’s Disorder would be removed completely from the DSM. You can read their rationale for removal here.
- The diagnostic criteria for Autistic Disorder will change. You can read the revised diagnostic criteria here. You can also read the rationale for changing the diagnostic criteria by clicking on the “Rationale” tab on that page and see the existing diagnostic criteria by clicking on the “DSM-IV” tab on that page.
- Asperger’s Disorder will be removed as a unique or separate diagnosis; people currently diagnosed with Asperger’s Disorder would be diagnosed under the newly re-defined Autistic Disorder. You can read the rationale for this change here.
- Childhood Disintegrative Disorder will be removed as a unique or separate diagnosis; children who meet current diagnostic criteria for Childhood Disintegrative Disorder would be diagnosed under the newly re-defined Autistic Disorder. You can read the rationale for this change here.
- PDD-NOS will also be removed as a unique diagnosis and will be subsumed under the proposed Autistic Disorder.
If you wish to send the APA feedback on their proposal, you can register on the DSM-5 web site and then submit feedback when you are logged in and looking at a particular diagnosis.
Note: With this post, I am switching over to “DSM-5″ instead of “DSM-V,” as the APA just announced that they are changing that, too!
In response to the newly proposed Temper Dysregulation Disorder with Dysphoria (TDD), the Child and Adolescent Bipolar Foundation issued a press release commending the APA work group on the proposal, but suggesting that the name was not helpful because of the connotations of the word "temper." They subsequently sent out a response to others’ criticisms of the proposed diagnosis. I am reproducing their mailing below with their kind permission:
We are writing to clarify some inaccurate media reports and email distributions. You may have heard about the proposed diagnostic category for children called Temper Dysregulation Disorder with Dysphoria (TDD). This new diagnosis is intended for children who have some overlapping symptoms of bipolar disorder, but do not have clear episodes of mania. CABF has provided feedback to the DSM V committee of the American Psychiatric Association. You can read our comments, concerns and recommendations in our press release and blog. Some media reports and listservs have provided inaccurate information, claiming that TDD is intended to replace a diagnosis of bipolar disorder in children, and that TDD is not supported by scientific evidence. These claims are untrue. CABF is guided by a Scientific Advisory Council that includes the nation’s leading pediatric psychiatric researchers, and we are committed to providing the most accurate and carefully-vetted information which affects our children.
- TDD is NOT meant to replace a diagnosis of bipolar disorder in children. Instead, it is meant to offer a diagnostic “home” for those children who do not fit the criteria for mania, but have been given this diagnosis because it was the best fit. There is “unambiguous agreement” within the Childhood Disorders Work Group of the DSM V committee that bipolar disorder presents in children. TDD is proposed to address overdiagnosis and misdiagnosis of BD in children.
- Read more