Labels are everywhere. They describe our ethnicity, religious affiliation, career, and sometimes, a medical condition. They can be good or bad; they can make us proud or ashamed.
A label can define you in a positive way, or it can help describe your challenges. One blind gentleman joked: "I'm good at a lot of things; seeing with my eyes just isn't one of them." Someone with ADHD might say, "I'm very creative but also very impulsive and easily distracted." Someone with Asperger's might say, "I'm a great detail person, but social skills and seeing things from another's viewpoint can trip me up."
Society has come to understand certain labels. When we say someone has ADHD, we understand the person can be impulsive, forgetful, inattentive, hyperactive and easily distracted. Those are hallmarks of the condition. When we say someone has Asperger's, we know the person has problems with social interaction and relationships.
Labels can be bad. They stigmatize; they can put people in boxes - and people don't fit in boxes. But labels can also bring freedom, community and understanding. Being African American, or Presbyterian, or lesbian, one can identify with others in that community. Having a label like Asperger's or ADHD can help to explain ones challenges and strengths. For example, Tara Kimberley Torme explains in her speech about Asperger's: "I discovered that I had a Neurological Disorder that set me apart from other people. What a relief, I was one of thousands and not alone and things started to make sense to me." Nomi Kaim puts it this way: "As I learned more about Asperger's and was able to draw parallels between what I was learning and my life, I eventually came to terms with it and was relieved to finally understand many aspects of my life that had baffled me up to that point." (The Story, American Public Media, Feb 10 2010).
I had a similar experience when I first came across Nonverbal Learning Disability on the Internet in 1998. It was as if I was reading about myself. For the first time in my life, my challenges and failures, my strengths and successes began to make sense. But unlike Nomi and Tara, when I mention that I have NLD, instead of understanding, I get blank stares, because most haven't heard of the condition.
ADHD and Asperger's were also once virtually unknown. Dr Linda Graham, AARE Award for Doctoral Research in Education recipient, notes that "ADHD went from something which was relatively obscure in the early 1990s, which most people didn't know about unless they had a child with it, to all of a sudden becoming something everyone knows about." Likewise, before Asperger's was included in the 1994 edition of the DSM, few had heard of the condition. Today, it is often in the media. People are talking about it, making movies about it, writing novels about it. On the other hand, conditions that are not listed in the Diagnostic Statistical Manual of Mental Disorders remain obscure. Although psychologists give the NLD diagnosis, average folks and many professionals aren't familiar with it, and even the definitions in medical literature are not always consistent.
This is important, because the latest edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, last updated in 1994, will eliminate these labels. ADHD will be lumped with Disruptive Behavior Disorders and Asperger's Syndrome will fall under Autism Spectrum Disorder. These new DSM V categories use much broader defining criteria than did the DSM-IV. While all of the conditions are neurologically based, there is an enormous difference between someone with Asperger's who has a college degree and an autistic individual who is completely unable to communicate and sits in a corner rocking. Likewise, negative, hostile, and defiant behaviors (traits of Oppositional Defiant Disorder or ODD) aren't the same as distractibility, impulsivity and hyperactivity (ADHD traits) or even deceitfulness and aggression (characteristics of conduct disorder or CD). Even though there are overlaps, there are also differences between NLD, Asperger's and autism - or between CD, ODD and ADHD. Lumping people with ADHD with potential sociopaths can't be a good thing.
Having a condition described in the DSM gives the disorder validity. When looking for information and resources, a label is a starting point. While making the box bigger can sometimes be a good thing, as more people can be included, many are concerned that the new, broader criteria blur the boundaries between mental illness and normal behavior. Without official recognition, it will be too easy to say that someone with Asperger's, NLD or ADHD isn't impaired enough to receive help.
Instead of specific labels, terms like 'high' and 'low' functioning will be used. However, is someone of genius intelligence who needs reminders to take a bath and change their clothes really 'high functioning?' How 'high functioning' is a person with above- average intelligence who can't stay organized, initiate projects, or keep a job? Many higher functioning individuals on the autism spectrum are well-educated but lack the social skills to function in society. While able to write and speak, they may still have problems with nuances like body language, conversations, or literalness. Most of these 'high functioning' individuals won't be able to find work that matches their intelligence and educational background. Many can do the work, but may not be able to think quickly or make appropriate decisions. Sensory sensitivities also make it difficult to function in certain work environments.
Even though we give lip service to individualism, accepting differences, and the benefits of inclusion, our society still does not accept people who are odd or different, who don't quite fit in. Eliminating labels which have served to bring understanding of these syndromes to the general public will have a deleterious effect on how people with these conditions will be perceived by society.
The draft of the DSM V manual is posted at http://www.DSM5.org, for public comment from February 10 until April 20, 2010.
