The Tourette Syndrome Association, Inc. (TSA) wishes to comment on the proposed changes to the diagnostic criteria and classification of Tourette’s disorder in the forthcoming Diagnostic and Statistical Manual-V (DSM-5).
The diagnostic criteria in DSM are used widely by physicians, insurance companies and other professionals for diagnosing medical conditions and managing reimbursement of medical care for individuals with mental disorders. The description and diagnostic criteria for Tourette’s disorder (the name for Tourette syndrome used in the DSM) and several other neurological conditions are also included in the manual. The DSM was first published by the American Psychiatric Association in 1952, and has since undergone several revisions prior to its current version (DSM-IV). Once again, the DSM is being updated, and the revised version (DSM-5) is expected to be released in May, 2013.
There are several changes to the diagnostic criteria being proposed for Tourette’s disorder. A draft of these proposed changes has been posted on the American Psychiatric Association’s website for public review and comment. The TSA encourages the Tourette’s disorder community to visit the DSM-5 website (www.dsm5.org) to learn more about the proposed changes for tic disorders and, if they choose, submit comments. The deadline for such comments is April 20, 2010.
The following are the major recommendations by the DSM-5 Work Group, a panel of experts responsible for revising the manual. Each recommendation is followed by the TSA’s position which has been developed in collaboration with members of TSA’s Medical Advisory Board.
1. In the current version, DSM-IV, Tourette’s disorder is listed in the section entitled “Disorders Usually First Diagnosed In infancy, Childhood or Adolescence”. For now, the DSM-5 Work Group is recommending that Tourette’s disorder remain in this section in the upcoming DSM-5. However, the DSM Work Group does make note of the fact that there is a possibility that the entire section “Disorders Usually First Diagnosed In infancy, Childhood or Adolescence” might be eliminated in the next DSM-5 edition. If that were to happen, then the DSM Work Group would recommend moving Tourette’s disorder over to the section entitled “Anxiety and Obsessive-Compulsive Disorders”.
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.
2. In DSM-5, it has been proposed that a diagnosis of chronic tic disorders – e.g. Tourette’s disorder and Chronic Motor or Vocal Tic Disorder can be made if tics persist for more than 1 year, beginning at first onset and regardless of a tic-free period during that time. This criterion eliminates the maximum 3 months tic free interval which was specified in DSM-IV. The rationale for the requirement for a maximum of a 3 month tic interval was an effort to assure that the chronic tic disorder was indeed chronic.
The TSA supports these revised diagnostic criteria. Our medical experts suggest that most doctors make a diagnosis of a chronic tic disorder based on the duration of symptoms from first tic onset and they do not adhere to the maximum 3 month tic free interval. This change is consistent with our experts’ actual practice, and simplifies the assessment of the chronic tic disorders.
3. In DSM-5, it is recommended that the term “stereotyped” be removed from the descriptive definition of a tic which was present in previous versions of the manual. The new proposed definition is: “A tic is a sudden, rapid, recurrent, non-rhythmic motor movement or vocalization”.
The aim of this change is to make it easier for physicians to distinguish between tics and stereotypic movements seen in children and adults. Although tics are clearly stereotyped movements, the TSA understands that the use of the term in the definition may create confusion and misdiagnoses. On the other hand, the proposed description of a tic does not capture the relative stability in tic symptoms within and across individuals. It is hoped that the committee will note this feedback and consider revising the definition of a tic so that it is both accurate and does not lead to misdiagnoses.
4. In DSM-5, it is proposed to change the name ‘Transient Tic Disorder’ to ‘Provisional Tic Disorder’. The current Transient Tic Disorder criteria are awkward in implementation because a twelve months observation period was required. For example, a child with a history of tics for six months could not receive a tic disorder diagnosis until 12 months had passed after first tic onset – a period when he or she could either receive a chronic tic disorder diagnosis if the symptoms had persisted, or a transient tic disorder diagnosis if the tics had gone away. This change in criteria will also eliminate the use of the “Tic Disorder, Not otherwise specified” category – an important goal for DSM-5.
The TSA supports this revision. Clearly, it simplifies the distinction between tics which are chronic, that is tics which are present for a year or more, from tics that have been present for less than 1 year.
In summary, the TSA, along with its medical advisors, recognize the importance of the classification and description of Tourette’s disorder in the DSM, and we are committed to doing all we can to ensure that the disorder is presented accurately and clearly in the forthcoming revision of the manual. Should there be further developments in this area, we will release an updated statement.
4/9/10 |
