What's in a Name?

A Brief Discussion of Labels

 

“What's in a name? That which we call a rose by any other word would smell as sweet.”
- Shakespeare, Romeo and Juliet

The question of whether to “label” a child with a diagnosis is a complicated one, a question for which there is no simple answer.  What to do with a label is even more complicated.  I've faced these questions as a parent – I have six children, one of whom has Prader Willi Syndrome and one of whom has Attention-Deficit/Hyperactivity Disorder (ADHD) - and also as a professional who is often the one performing psychoeducational evaluations that delineate cognitive and academic strengths and weaknesses.

There are many good reasons for a diagnosis: a correct diagnosis can help parents understand their child, can help teachers better know how to teach the child, and can help the child to normalize his or her areas of weakness and celebrate his or her strengths.

But there are also many ways in which a diagnosis can be harmful.  A diagnosis can stigmatize a child in the eyes of his teachers or friends, can cause pain and a sense of despair to parents, and can cause a child to give up attempting to do things he has been told he is poor at.  Besides, a diagnosis is inevitably inaccurate: as Dr. Mel Levine once wrote, “These children are far too complicated to be described with a single label.”  These problems cause many professionals (including Dr. Levine) to eschew the use of a diagnostic label and to simply supply a narrative description.

Most of the time I do give diagnoses.  I do this not only because it was my training to do so, but for a host of other reasons including my own experiences as a parent and as a teacher.

In truth, I knew that my daughter’s diagnosis didn’t cure any of her issues: she still had the same behavioral and learning problems that she had before she was diagnosed.  But as a parent, the diagnosis helped me to understand that these problems were not her fault – or mine – and it helped me to look at them more objectively.  I was able to learn more about how others had dealt with the same difficulties – what had worked and what had not worked – so that I didn’t have to try to re-invent the wheel.  In understanding more about why she was having difficulty, I was able to analyze tasks and situations so as to minimize, avoid, or explain problems.

Similarly, as a teacher, I was always grateful when I knew the diagnosis for a child in my classroom.  In general, teachers are tremendously dedicated professionals who really care about the children in their classes.  But if they encounter behavior they don’t understand, and the tools they have don’t work, they can become frustrated.  A good teacher will reach out for more tools, try different approaches, and attempt to find what might work with a particular child.  But he or she is operating in the dark!   Although any good assessment will include a number of recommendations, a diagnosis provides a starting place to find more.  Often, teachers will look up diagnoses on the Internet or buy books to improve their knowledge about a particular diagnosis.    Just as often, they may have a repertoire of strategies that they have already developed for a particular problem.

At the same time, teachers (and parents) often can be more understanding if they know that the child has a diagnosis. While a diagnosis is never an excuse, it can often be an explanation for behaviors, learning styles, or learning deficits that might otherwise be attributed to motivational factors.  In other words, a child who has ADHD is not just spoiled, oppositional or attention seeking when he fidgets, pokes his neighbor and interrupts the teacher.  A child who is dyslexic is not just being lazy about learning to read, and a child who is dysgraphic is not just being oppositional about handwriting.

A simple label also often helps the child himself to normalize his weakness.  Secrets are important.  That which is whispered about but never openly named can become monumental.  Often, the message we give to kids by not naming the problem is that it is much larger than it actually is.  Sometimes it is a lot nicer to say, “Yo, guess what?  There’s an elephant in the living room” instead of silently walking around the elephant everyone knows is there.   Once we’ve said there’s an elephant in the living room, it is not so scary and we can logically discuss how to deal with it.  Since a good assessment will also emphasize the child’s strengths, naming a weakness as part of a larger description makes it understandable and okay.

Finally, a formal diagnosis is often important in order to obtain necessary services or accommodations. In many schools or state-funded settings, certain funds are allotted only for special-needs kids.  If a child has a need for smaller classes, special placement in the classroom, one-on-one tutoring, use of a keyboard in class, extended time on tests or a host of other potential accommodations, most educational settings will require a diagnosis to support that need.  For example, The College Board, which administers the S.A.T., requires a diagnosis and prefers a history of diagnosis that extends far in advance of the months just before the teenager takes the S.A.T. before it will grant extended time or other accommodations for the test. Similarly, kids with Attention-Deficit/Hyperactivity Disorder often benefit from medication.  Most physicians insist on a specific diagnosis and complete psychoeducational assessment before prescribing medication.

Of course, having a diagnosis does not necessarily mean that the diagnosis should be shared with everyone.  It is an unfortunate truth that many people will define an individual based on their understanding (or misunderstanding) of the diagnosis alone.   So telling Aunt Betty that your son has Attention Deficit Disorder is not always the best idea.  This is often culturally influenced as well.  For example, in some countries only two percent of the population is designated as having special educational needs.  In the United States, between ten and twenty percent of children are designated as special needs children.  If we assume that kids everywhere are pretty much the same, then obviously what is meant by “special needs” in some countries is different from what is meant in others.  Similarly, people in their twenties may have a different understanding of attentional or learning difficulties than do their grandparents.  Before using a label instead of a verbal description of behavior, parents and professionals should be sure those with whom they are communicating similarly understand the label.

So it is important to exercise some caution in the sharing of labels.  This is particularly important for expatriate special needs children, as they often move from school to school and sometimes from one educational system to another.  Parents (and schools) should be clear that a psychoeducational assessment belongs to the parents and should not automatically be included in a packet to be sent from the child’s school to his or her new placement.  Parents should also feel free to ask the professional preparing such a report to amend it so that it uses verbal description rather than a label if they fear that the label will be misunderstood.  Simply put, diagnoses are supposed to help, not hurt, but quite often their use has been to filter children out of, rather than into, appropriate programming.  Those of us who entered the field of psychology intending to help kids are often shocked to find that our attempts to provide a “road map” explaining a child’s strengths and weaknesses have ended with others using the road map as an excuse to cancel the trip! Although well-meaning in our attempts to address problem areas, we may have unwittingly created a single, restrictive shape into which we try to force dynamic and complex individuals.  In many cases, the label is unnecessary.   If a rose will be misunderstood if called a rose, it is sometimes better to call it “a beautiful, fragrant, sometimes red, multi-petaled flower with a thorny stem.”  It says the same thing, and the aroma is just as sweet.