Raised in a Spanish-speaking household, Peter learned to speak English at age two while recuperating from a car accident that left him paralyzed from the waist down. Despite an amazing work ethic and informal assistance from others, he struggled in school with painfully slow reading and writing. After reading one of his law school papers, that had great content but some awkward phrases, I discretely asked him if he had ever been tested for a learning disability. Four weeks later, after helping him find inexpensive diagnostic services, he learned at the age of 25 that there was a name for his academic struggles: dyslexia (the most common type of learning disability). As a low-income student with a visible disability, Peter had no idea he should be evaluated for dyslexia. This diagnosis served as a pivotal moment for Peter; his self-confidence improved as he realized he was not struggling due to low cognitive aptitude. He graduated from law school with some accommodations, received extra time on the bar exam, and became a successful lawyer.
Alarmingly, the American Psychiatric Association has recommended erasing the term “dyslexia” from the Diagnostic and Statistical Manual of Mental Disorders and replacing it with the vague and unscientific term, “Specific Learning Disorder,” in its Fifth Edition (“DSM-5”). If this recommendation is adopted, tens of thousands of individuals like Peter could lose a disability classification and accompanying accommodations. The proposed modifications would be particularly disastrous for low-income students and adults who struggle with painfully slow reading and writing.
According to the United States Department of Education, 2,476,000 children between the ages of 3 and 21 were classified as having a learning disability in 2008-2009. Additionally, millions of adults are classified as having a learning disability and receive accommodations in college, on professional testing and at the workplace in order to be productive members of society. The most common form of learning disability is dyslexia yet the proposed DSM-5 (unlike the prior DSM) does not even mention dyslexia by name.
The proposed changes to the DSM-5 could reverse the progress we have made in classifying and accommodating those with learning disabilities, particularly those with dyslexia. Oddly, the United States Congress seems better informed about dyslexia than the American Psychiatric Association.
When Congress amended the Americans with Disabilities Act in 2008 to expand protection for those with disabilities, it understood that dyslexia is a neurologically-based impairment that causes individuals to use a “word-by-word and otherwise cumbersome, painful, deliberate and slow” reading process throughout their life. With accommodations, Congress realized that such individuals could often be highly productive members of society because of their strong work ethic and high intellectual aptitude.
The proposed DSM-5 reflects a complete misconception of the nature of a learning disability. The amorphous category of “Specific Learning Disorder” presumes that individuals with a learning disability will be low-achieving and need continual testing to demonstrate the existence of this impairment based on the stereotype that they might outgrow it. It also presumes that adults with learning disabilities will have been diagnosed during their primary or secondary education, ignoring the large number of young people in our society who do not have access to the clinical services necessary for such a diagnosis.
One of the most alarming aspects of the proposed DSM-5 is that it completely buys into what is called the “Response to Intervention” (“RTI”) process for diagnosing a learning disability. RTI is a creature of No Child Left Behind – it requires that school districts provide low-achieving students with intervention to help them attain grade-level success. RTI has nothing to do with disability; it is a mechanism to help students, especially poor students, attain grade-level expectations. In a misguided attempt to align a diagnostic category with a statute that has nothing to do with disability, the proposed DSM-5 requires an RTI process before a student can be classified as learning disabled and receive special education and related services. In a January 2011 letter, the United States Department of Education has criticized the way the RTI process often delays a referral for special education classification of students with learning disabilities. By requiring RTI, the proposed DSM-5 could worsen an already-existing problem.
In recent years, we have made enormous progress in providing appropriate assistance to millions of Americans with learning disabilities while maintaining high expectations for their achievement at school and at work. At the same time, science has opened up our ability to understand dyslexia by imaging how the brain works when a person is reading. The proposed DSM-5 ignores legal and scientific developments, erases the category of “dyslexia,” and would turn back the clock with disastrous consequences for children and adults with learning disabilities, like Peter, who are tremendously bright but need modest accommodations in order to become productive, tax-paying members of society.
Professor Colker is an expert in disability law and is a frequent guest on National Public Radio (NPR). She is the author of nine books, and her forthcoming book is Disabled Education (New York University Press 2012). Professor Colker was awarded the 2009 Distinguished University Professor, the University’s most distinguished award.