When my daughter was two-years old she was diagnosed with PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified). People assured us she was “mild” and she would certainly be mainstreamed by kindergarten. When she was not mainstreamed, people shrugged and suggested any number of things we might do to ensure she have that meteoric rise that everyone kept saying was just around the corner. When that meteoric rise did not occur people stopped using the word mild and the word “autism” replaced the initials PDD-NOS on her IEP.
During those early years I didn’t spend much time considering or questioning functioning labels, what they really meant, how they were being used, other than to say when people inquired, that my daughter was “mild”. And then we went to Em’s neurologist where I happened to say something about how Emma was “mild” and the neurologist said, in a tone of poorly concealed shock, “Well no. I wouldn’t say she was mild.”
“You wouldn’t?” I asked in surprise. “Well what would you say?”
He looked away from me before answering, “I would say she was… moderate, but mild? No.”
I was stunned. The idea that my daughter was not “mildly autistic” had not occurred to me. Those two words that I had clung to during those early years, were suddenly ripped from my grasp. I stood there trying to remember to breathe. And I remember that sinking feeling in my gut. That feeling you feel when you see something massive barreling toward you and you know there’s no chance you’ll be able to get out of the way in time. There have been a handful of defining moments during this crazy journey that began when I first heard the word autism uttered in reference to my young child and this moment at the neurologist’s was one of them. At the time I couldn’t speak. What was there to say? My knowledge of functioning labels was almost non-existent and what I thought I knew about them caused me to make a whole series of assumptions I would later find were wrong, each and every one of them, completely, categorically, wrong.
It has taken me many, many years to deconstruct what people are attempting to say when they use functioning labels. I have found the use of these labels is uniformly inaccurate, misguided and does far more harm than good. I understand they serve as a short-hand for insurance companies, schools and various medical institutions, but I strongly believe we as a society need to re-examine the words we are applying to a great many people and the disservice these labels are doing. Rather than labeling someone mild, moderate or severe we should be looking at the specific needs each person has, breaking those needs down into more specific language that would better serve them.
As an example (this is in an ideal world):
A eleven-year old Autistic girl who has some verbal language, but relies heavily on scripts should be encouraged and taught to type and/or write. An iPad should be made available to her during school hours and in the home. Pointing skills should be a priority and supportive typing techniques should be explored.
Teaching grade level material in an engaging way, using visual, auditory, tactile and kinesthetic teaching techniques is essential.
As this young girl shows a need for intense sensory input and craves an audience, as well as displays strong leadership qualities – drama, acting and theatre classes should be included in her curriculum. It turns out she is also very musical and is a talented singer with excellent aptitudes for both melody and rhythm – therefore music should be incorporated into her day as well.
This same young girl has shown athletic abilities. She has core weakness and sequencing issues, therefore gymnastics, swimming and track should be essential components of her day, etc.
I could go on and on here, but the point is, if this same young girl is presented simply as “moderately” autistic how does that help her receive the specific things she needs in order to flourish? Does the label help her at all or does it suggest a level of incompetence? Is she relegated to a special education classroom where she is taught “life skills” at the exclusion of all else? What does this functioning label do to our expectations of her? Do we “dumb down” her learning materials because we assume she cannot possible understand? Just because she enjoys watching the same video over and over for years on end, do we assume this is an accurate gauge of intellectual capability or do we entertain the notion that this is a way to calm herself with something that is familiar? How does the label help her parents understand their child? How does the label “moderate” help educational and medical establishments help her? How does a “moderate” label directly influence the goals that are then listed on her IEP?
Functioning labels are more than just meaningless constructs; they are doing damage. I understand the arguments for why people feel strongly they are necessary, but I disagree. Functioning labels need to be tossed aside. None are being served by them.
Em during her gymnastics class