Jun 09 2012

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The Dyslexia Quandary

clay model of dyslexia

Model by David Hirst, Dyslexia Correction Specialties

A comment on the current proposed DSM 5 criteria:

New visitors usually discover our web site via a search for “signs of dyslexia” or “test for dyslexia.” Our incoming email comes from teenagers and adults who want to know if their academic or workplace problems can be explained by dyslexia. Parents express frustration with the process of seeking diagnosis and support for their children.

The term dyslexia was coined in 1887 by a German ophthalmologist, Rudolph Berlin. But there exists no standard for diagnosis. The DSM IV defined “Reading Disorder” broadly as “Reading achievement,… substantially below that expected given the person’s chronological age, measured intelligence, and age-appropriate education.” (DSM IV – 315.00)

An early draft of the forthcoming DSM V filled this gap with a simple definition. The term “Dyslexia” was added to be “consistent with international use”. (A 13 Proposed Revision Rationale). The condition was described broadly as “Difficulties in accuracy or fluency of reading that are not consistent with the person’s chronological age, educational opportunities, or intellectual abilities.”

However, the APA has now retreated from this position, eliminating the term dyslexia from their recommendation entirely: “Learning Disorder has been changed to Specific Learning Disorder, and the previous types of Learning Disorders (Dyslexia, Dyscalculia, and Disorder of Written Expression) are no longer being recommended.”  (See Neurodevelopmental Disorders.)

The text of the newly defined  Specific Learning Disorder will exclude thousands from consideration or diagnosis, by interposing a diagnostic requirement: that “current skill level” be “well-below the average range.”

This means that higher functioning dyslexics will never have the benefit of a diagnosis. As happened with my own son, they will be deemed to be “lazy” despite the hours they put in to attain barely-average functional skill levels.

Those whose skill level is sufficiently depressed to qualify will lose their diagnosis at the moment any form of intervention is successful. It won’t matter how hard they struggle to get there; the moment their reading scores begin to approach “average” their diagnosis will evaporate. It is likely that whatever support or accommodations have enabled their improved skills will also be withdrawn as well.

This is a political determination, not a scientific one — very much at odds with a growing body of brain research showing that dyslexia is neurologically-based.

The APA will allow comments on the new proposal until June 15, 2012.  Anybody can register at the APA web site at www.dsm5.org and post.  If you are not happy with the proposal, I urge you to take the time in the next few days to do so.

CAPTCHA image from APA web site

Sample CAPTCHA image blocking APA comments

If you are dyslexic or have any sort of visual impairment,  a note of caution: you will probably need help to pass the CAPTCHA image text. The letters are squiggly, the colors mushy. The test appears to be case-sensitive, but letter size is variable. No alternative is provided other than to reload and hope for a better image.

(I flunked the first time around, but fortunately was able to correctly guess all letter in the second test I was offered.  I don’t know how many attempts you will be allowed.)

I posted a comment this morning — I will share that in the comment section on this blog. If you comment, I invite you to the same: make a copy of your comment, and cross-post it here so that others can see it.

(If you can’t pass the APA’s letter-recognition text, post here anyway and let us know what problems you faced. You’ll note that we don’t make our posters pass tests. Your first posted comment to this blog will be moderated, but it will be read by a human being, and all legitimate posts from human beings will be cleared and displayed in a timely manner. You do not have to register to post, but if unregistered you will need to supply an email address. Your email address will not be published or shared.)


Update, 24 November 2012:
The APA seems to have either removed the text of proposed revisions to the DSM V from its website, or restricted access. Either way, the internal links to the dsm5.org won’t work; you will simply be confronted with an APA log-in screen when you click those links.  I have left the link in this blog post active, in case the APA restores access int the future.

About the author

Abigail Marshall

Abigail Marshall is the Webmaster & Internet Information Services Director for Davis Dyslexia Association International. She is also the author of two books about dyslexia, The Everything Parents Guide to Children with Dyslexia and When Your Child Has ... Dyslexia.

Permanent link to this article: http://blog.dyslexia.com/the-dyslexia-quandary/


2 pings

  1. Abigail Marshall

    Here’s the comment I posted to the APA web site early this morning:

    I am troubled by the current wording of the Proposed Revision, “A 08 Specific Learning Disorder”. I believe that section A, C & D are accurate and appropriate, and provide clear guidance to practitioners. However, I am concerned with the elimination of descriptive terminology such as “dyslexia” as well as the specifications as to “current” skill level in part B.

    Omitted Reference to “Dyslexia”

    With respect to the term “dyslexia” — parents often face extreme difficulty in getting services for dyslexic children, precisely because their children do not appear to be otherwise disabled and seem too capable in other areas to need specialized service. Parents in many parts of the US are routinely told either that “dyslexia” does not exist, or that it is a “medical diagnosis” that is not recognized by the educational system. Similarly, dyslexic children and adults are faced with a barrier that others will not recognize or acknowledge — they are routinely told that they are “lazy” or need to “try harder”. A diagnosis of “dyslexia” comes as a relief to many; it is the first official confirmation that they are neither lazy nor stupid, and that there is a clear explanation for why tasks that seem to come easy for others are so difficult for them.

    To fail to use the term “dyslexia” simply perpetuates the quandary that these individuals face: they have a condition clearly described in literature, which is the focus of thousands of research studies. Google Scholar reports 111,000 results on a search of articles of the term “dyslexia,” and 1,870 legal documents containing the term. Google Books reports 667,000 results, including 35,600 results where the term appears in the book title. And yet there is no agreed standard in the U.S. for diagnosis.

    If learning disabilities of any sort are to be included in the forthcoming DSM-5 — then certainly the drafters have a responsibility to set forth the criteria for diagnosis of the most common and most well known of learning disabilities. The failure to do this only perpetuates confusion.

    I would note that the issue could be addressed simply by adding appropriate terminology as a parenthetical note to the titles of to the Descriptive Feature Specifiers. That is, Item 1 Reading could simply be amended to be, “1. Reading (Dyslexia).” Similarly the term “dysgraphia” could be appended to “2. Written Expression”, and “dyscalculia” could be added to “3. Mathematics.” The addition of these terms would simply be tying the commonly used terminology to the specific descriptors that apply to each.

    Part B – Requirement of Current, Severely Depressed Skill Levels

    Part B’s requirement that current skills be “well-below average range” for the individual’s age or intelligence, is in direct contradiction to the stated rationale that diagnostic criteria should not depend on comparisons with overall IQ. What is the “average range” of reading ability for individuals with measured intelligence in the gifted or highly gifted range? Does research even exist to determine those numbers? And how does one determine the average for the person’s “intelligence” without comparing reading level with overall IQ?

    Many individuals with dyslexia or other learning disabilities perform at or above “average” range, but they do so only with great effort disproportionate to the tasks. Many dyslexics are not diagnosed until adulthood, often at university level, precisely because they work extremely hard to compensate for their area of difficulty, or develop strategies or shortcuts to mask their difficulties.

    That they manage to function despite their internal barriers does not make them any less “dyslexic”, any more than athlete Oscar Pistorius can be said to have grown legs, no matter how efficiently he runs on his artificial legs.

    These average to above-average performing dyslexics are often the ones who stand to benefit the most from a specific diagnosis, because they do not otherwise qualify for special educational services. These individuals have the capacity to perform at well above whatever level they have tested, but for their dyslexia or similar learning barrier.

    Tying current measured skill level to the diagnostic criteria penalizes those individuals who are successful with a given remediation or intervention — as soon as their skill areas improve their diagnosis will be negated. It also puts good teachers in the untenable position of knowing that if they teach a given student too well, their success may deprive the child of further services.

    The DSM 5 drafters should not confuse the legal issue of when schools are required to provide services with the medical, psychological or neurological issue of when an individual is deemed to have a “learning disorder”. Perhaps this could be better addressed in the severity criteria; certainly it is clear that an individual whose measured performance is well below average has a more “severe” disability than the individual who has managed to compensate.

    I write from experience. My name is Abigail Marshall and I am the author of two books geared to parents about dyslexia. (The Everything Parents Guide to Children with Dyslexia, and When Your Child Has …. Dyslexia, both published by Adams Media.) I am also the webmaster and internet services director for Davis Dyslexia Association International, I am the parent of a dyslexic son, and have worked in this field for 17 years.

  2. kim wegenke

    Some much can be gained by helping dyslexics excel. Look at all the dyslexic geniuses. Where would we be if Einstein did not get help from his uncle?

  1. The Dyslexia Quandary – Continued » Dyslexia the Gift Blog

    […] two weeks ago, I wrote about a proposed revisions to the DSM-V that retreats from an earlier draft proposal by eliminating use […]

  2. The Dyslexia Quandary – Update » Dyslexia the Gift Blog

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