Disorder, Disability or Difference: What’s the Right Term?
Parents of children with learning and attention issues are often bombarded with terms for how to describe their children's challenges. Some people seem to talk about dyslexia and ADHD as "disorders," while others refer to them as "disabilities." Sometimes it seems as though the terms are used interchangeably. But do they actually mean the same thing? And for that matter, why do some people avoid using either word and insist on calling dyslexia and ADHD "differences"? In fact, the three words carry different meanings, and which term is most appropriate may depend on the context.
As a parent, here's how I've seen the terms disorder, disability and difference used in the world of learning and attention issues.
"Disorder"The word "disorder" is a medical term from the Diagnostic and Statistical Manual of Mental Disorders (DSM) V, the authoritative guide for mental health professionals in the United States. The DSM V defines "mental disorder" as follows:
a syndrome characterized by clinically significant disturbance in an individual's cognition, emotion regulation, or behavior that reflects a dysfunction in the psychological, biological, or developmental processes underlying mental functioning.
From a parent's perspective, the term "disorder" is most relevant with your doctor and the healthcare system.
"Disability"While the word "disorder" is a medical term, the word "disability" is a legal term that appears in the Individuals With Disabilities Education Act ("IDEA") and Section 504 of the Rehabilitation Act. These federal laws protect the rights of students with disabilities. In order to receive special education services under the IDEA, a student must be a "child with a disability." The IDEA defines "disability" in a particular way. It requires that the child have a condition that falls within one of thirteen specific categories and that because of that condition the child needs special education and related services. Similarly, Section 504, which allows for accommodations and modifications for students with disabilities, has its own definition of disability—"a physical or mental impairment which substantially limits one or more major life activities." So even if a physician says your child has a "disorder," a school may tell you that the diagnosis does not by itself establish a "disability" under federal law.
"Difference"If "disability" is a legal term, and "disorder" is a medical term, why do some people say a struggling child just has "learning differences"? Did this term arise out of pity or a misguided sense of political correctness? The first thing to know many experts believe the word "difference" doesn't accurately describe the challenges posed by conditions like dyslexia. Nevertheless, a growing body of evidence arising out of the field of neurodiversity has revealed that there is a very wide range of variability in the human brain. Some of these variations, while causing difficulties in particular areas like reading, can also bring capabilities in other areas. Some believe it's inaccurate to assume that one person's wiring is pathological while another's is "normal," when the truth is we are simply different.
The bottom line for parents is that the terms we use for learning and attention issues depend upon our context and our objectives. If a physician diagnoses a "disorder," take that information and use it to guide your efforts to understand the ways in which your child struggles. But don't rely upon that diagnosis to provide you with a ticket to accommodations or special education services at school. Instead, in working with the school, focus on whether your child has a "disability" that gives her legal rights. Finally, in talking with your child, consider dispensing with both terms. Instead, help your child understand that whether it's called a disorder or disability, everyone has a unique profile of strengths and challenges, because ultimately, everyone is "different."
Jenifer Kasten is a Georgetown law school graduate, policy analyst and mother of two children. She is a member of the board of directors of Raising Special Kids, an Arizona nonprofit organization. She is also a co-founder of the new Phoenix, Arizona affiliate of theParents Education Network, a coalition of parents collaborating with educators, students and the community to empower and bring academic and life success to students with learning and attention differences. A former litigator, she is currently an inactive member of the bars of Washington, D.C., Maryland, and Arizona.