In a Facebook posting about two weeks ago, Julya Johnson (nee Shane) asked me to comment on the latest Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V) diagnostic criteria for Specific Learning Disability and the mysterious relegation of the word dyslexia to an “alternative term.”

It might make sense to start by explaining a bit about the process for updating the DSM-V.

Here are a few answers to questions about the development process verbatim from the American Psychiatric Association DSM Development Committee:  (italics are my comments)

What was the process that led to the new manual?

The APA prepared for the revision of DSM for nearly a decade, with an unprecedented process of research evaluation that included a series of white papers and 13 scientific conferences supported by the National Institutes of Health. This preparation brought together almost 400 international scientists and produced a series of monographs and peer-reviewed journal articles.

The APA Board of Trustees, which approved the final criteria for DSM-5 on Dec. 1, 2014 appointed a Scientific Review Committee of mental health experts to review and provide guidance on the strength of evidence of proposed changes. The Scientific Review Committee evaluated the strength of the evidence based on a specific template of validators. In addition, a Clinical and Public Health Committee reviewed proposed revisions to address difficulties experienced with the clinical utility, consistency and public health impact of DSM-IV criteria.

Who was involved in the development process?

APA recruited more than 160 of the top researchers and clinicians from around the world to be members of our DSM-5 Task Force, Work Groups and Study Groups for this important job. These are experts in neuroscience, biology, genetics, statistics, epidemiology, social and behavioral sciences, nosology, and public health.  These members participate on a strictly voluntary basis and encompass several medical and mental health disciplines including psychiatry, psychology, pediatrics, nursing and social work.

How were decisions made about what would be included, removed, or changed?

APA’s goal in developing DSM-5 was to create an evidence-based manual that is useful to clinicians in helping them accurately diagnose mental disordersDecisions to include a diagnosis in DSM-5 were based on a careful consideration of the scientific advances in research underlying the disorder, as well as the collective clinical knowledge of experts in the field. Advances in the science of mental disorders have been dramatic in the past decades, and this new science was reviewed by task force and work group members to determine whether diagnoses needed to be removed or changed.

My point in sharing the above information with you is this:  On the surface, it looks like the decision-making process for updating the DSM looks well-thought out and quite rigorous and in many ways it is.

But for those of you who have participated in the academic world can you imagine using the consensus model with that many researchers and clinical professionals?

Do you think there might be some politics involved in the decision-making process?

Here’s another piece of the puzzle.  One of the stated goals for the new DSM edition, according to Dennis Charney et. al. (,2002.pdf, Chapter 2)  is to work toward a more “etiologically-based diagnostic system” that would move the psychiatric world “into the mainstream of modern medicine where etiology and pathophysiology have replaced descriptive symptomatology as the fundamental basis for making diagnostic distinctions.”

For those of you who are allergic to terminology, etiology of something means the cause of something.  Pathophysiology simply refers to the idea that we can map the symptoms of a disorder to actual physical structures…like neural pathways in the brain and dyslexia.

So, in simpler terms, we want to move from just describing what we’re seeing in testing and observation of dyslexia to actually mapping the underlying issues in how a person’s brain is wired and how that impacts the development of reading, writing and spelling.

Which is what we’ve been doing for many years.

Fascination and Frustration

[Note:  In the next section, I’m going to quote heavily from Comments on Proposed DSM-5 Criteria for Specific Learning Disorder from a Legal and Medical/Scientific Perspective If you do not have this article in your files, I couldn’t recommend it highly enough.  The authors include Ruth Colker, JD, Sally Shaywitz, MD, Bennett Shaywitz, MD and Jo Anne Simon, JD.]

As the Colker, et. al. article points out so elegantly, dyslexia is essentially the most well-described clinical phenomenon we have in the SLD category consequently the DSM committee actions are quite disturbing.

“Specifically, dyslexia is a well-described and long-standing entity that adheres to a well-specified medical model including, known neurobiology, pathophysiology, symptoms and developmental manifestations, treatment, and long term outcome. In contrast to the other domains included under SLD, dyslexia is not a feature but a well described disorder.”

Further… “Given the advanced state of knowledge of its neurobiology and pathophysiology, dyslexia serves as a model for the identification of a learning disorder.”

Nonetheless, in spite of over 100 years of discussion about dyslexia as a distinct clinical phenomenon, the criteria for Specific Learning Disorder relegates the term “dyslexia” to the following in the DSM V:

  • 00 (F81.0) With impairment in reading:
    • Word reading accuracy
    • Reading rate or fluency
    • Reading comprehension
    • Note: Dyslexia is an alternative term used to refer to a pattern of learning difficulties characterized by problems with accurate or fluent word recognition, poor decoding, and poor spelling abilities. If dyslexia is used to specify this particular pattern of difficulties, it is important also to specify any additional difficulties that are present, such as difficulties with reading comprehension or math reasoning.

It would be enough if the denial of the state of knowledge about dyslexia was the extent of the issue.  The disconnect between the stated goals of the DSM development team and the exclusion of acknowledgement of the actual scientific history of dyslexia is stunning and morbidly fascinating…much like a car wreck in the opposing lane.

Finally, one of the very last versions of the DSM V manual the diagnosis of dyslexia included a reference to requiring participation in RTI.

Herein lies the rub for those of us who already suffer needlessly by having to wait sometimes years before a proper evaluation is conducted to determine eligibility for services.

In spite of the final changes in the wording it is noteworthy that, after a 10 year process, attempts were made to insert a poorly executed intervention system into the diagnostic process.  The Colker, et. al. article played a key role in getting the language changed, in my opinion.  Again, if you haven’t read the article I strongly urge you to do so.  It is a great lesson in political manuevering. Suffice it to say, we all know that requiring RTI in lieu of a proper educational evaluation is in direct opposition to the IDEA.  It’s illegal.  But we also know that many school districts are attempting use RTI to replace the special education teams and processes in spite of the final changes in the wording of the diagnostic criteria. 

The Current Bottom Line

  • Colker, et. al. uses the word “inexplicable” to describe why the term dyslexia is subsumed in the SLD category as an alternative term. I don’t think it’s inexplicable at all.  In fact, I think it’s obviously a result of political maneuvering in the DSM update process IN SPITE of massive amounts of peer-reviewed data confirming that dyslexia research strongly reflects the presumed goal of using an “etiologically-based” system for diagnosing SLD.
  • RTI (or the concept of classroom intervention) is not evil in and of itself. The process/strategy is being misused in order to avoid proper evaluation of our kids.
  • RTI (or any other classroom intervention approach) also does not “cover the waterfront” regarding the identification of learning disabilities. As we know, intensive intervention is not offered in later grades (including college) where many of our students are first identified with dyslexia.
  • The research, as well as my own clinical anecdotal experience, clearly indicate that there is no nationally accepted standard of implementation for RTI, that the RTI process/protocol is not implemented consistently and staff training for the implementation of the program is inconsistent at best.

Ultimately, though, as our understanding of the complexities of the neurological underpinnings of dyslexia grows (Double Deficit anyone?), the idea of using a blunt instrument like RTI or any other classroom intervention in lieu of a proper evaluation to “diagnose” dyslexia is absurd.  As Martha Denckla, Sally Shaywitz, Louisa Moats, Maryanne Wolf and countless others will tell you, each of our kids’ brains are unique.  We have a responsibility as parents, specialists and educators to appreciate, understand and integrate what we’re learning in the research into our daily decision-making about our kids and their needs. 

In my opinion, the DSM V committee members blew it…and in a very ham-handed fashion.  The whole dynamic of Dyslexia Denial is fascinating, painful and ultimately sad.  And yet we need to keep working…we’ve never had the momentum we have now.  Let’s use it.

Kids need us.  Parents need us.  And teachers need us too.  Never give up.