Update: Since the publication of this article the final draft of the DSM V has been published and the term 'dyslexia' has been reintroduced.
As I write this, a rather austere silver tome sits on my desk, open to page 52. The book is the Diagnostic and Statistical Manual of Mental Disorders 4 Text Revision, often shortened to DSM-IV for ease. On this particular page appears a singular word that has profoundly affected millions: 'dyslexia'.
The tome has served as the cornerstone for an entire academic field and industry since it was published in 1994 (the Text Revision was published in 2000) In May of 2013 the newest edition, the DSM-V, is set to be released, updating and altering the way diagnoses and treatments are handled for the foreseeable future. The current draft can be found online, but the word 'dyslexia' is nowhere to be found among these pages.
I believe that ultimately this omission will come to harm those who are dyslexic. The scientific, bureaucratic and semantic argument against the oversight has been made very well by the International Dyslexia Association1(IDA). There remains however some ground to be covered in the more intuitive social impact it will have.
We are at an interesting tipping point in the history of dyslexia. From the present one can stand and look to the younger generation of dyslexics and see early diagnoses followed by phonemic interventions bringing them to grade level literacy and beyond. Looking to the older generation however, we see stories of dyslexia realized late in life, retrospectives of bullying and angry teachers who weren't capable of understanding the issues of a dyslexic student. To say diagnostic, preventative and remedial methods for literacy struggles have come a long way would be an understatement. The rosy picture for the current generation might on the other hand be a little overstated. The broad-strokes improvement is not as visible in underdeveloped areas and in some public school systems. Suffice to say that the direction and speed of the progress is fairly promising.
To what can we attribute this progress? Many factors, to be certain, but one stands out to me: awareness. Nothing is more instrumental in the proper understanding and provision for dyslexia than simple public awareness. Because of organizations such as the IDA, books such as The Dyslexic Advantage and teaching approaches such as Orton-Gillingham, dyslexia has a clear place in our society. They have fostered the public understanding of not only the prevalence of dyslexia but also its nature. The very word 'dyslexia' is the lynchpin of this. Somehow the book title 'The Specific Learning Disorder (Reading & Written Expression) Advantage' doesn't quite roll off the tongue.
Cognizance of dyslexia enables teachers to recommend early testing and modify course structure where appropriate. Among students it will help prevent the teasing that older people with dyslexia frequently recall being subject to at school. Employers and employees will benefit form a clearer view of the weaknesses and strengths of a dyslexic individual. At all levels of life it improves the lives of dyslexic people.
How does the simple removal of a word have all this power? It is because the power has been infused into the word itself. All the knowledge of dyslexia at the public level is intrinsically attached to the word. To remove it would set the knowledge back. The heartbreaking stories of dyslexic children who as little as 20 years ago were just written off as 'stupid' or 'unteachable' and never given adequate help are not so distant as we like to think. This word is the link between the public perception and the professional world. The link that gets a dyslexic child into a phonemic literacy program and opens up the world of reading and writing to them.
There is hope though; in a previous draft of the DSM-V, which did use the word 'dyslexia' its inclusion was explained as follows:
“Name change to dyslexia consistent with international use”
This succinct defense of the terminology begs the question as why the word was removed in the newer drafts. The condition is the same, the cluster of symptoms are the same, and the name everyone knows it by is 'dyslexia'.
Perhaps popular usage of the word will continue regardless of labels used by the DSM-V, but the confusion caused by the disagreement between popular terminology and the manual will only harm those who we are seeking to help. Interdisciplinary confusion will arise as well since popular use of the word 'dyslexia' includes academic research and common use among psychologists, psychiatrists and teachers.
The deadline for public comment has passed, though not without a spirited defense from the IDA among others. With the final publication date slated for May 2013 things could still change. I for one hope that they do.