Wednesday, May 14, 2014

The Truth Behind the Autism Label

 “Autistics are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work.  It’s that you’re destroying the peg.”  -Paul Collins


            In the early days of Ben’s autism diagnosis, as I scoured the Internet for answers, I clung to a phrase like a life preserver: “high functioning”.  Since Ben is a verbal, articulate, intelligent little boy, “high functioning” felt like an important distinction.  'Sure, he may be a little quirky,' I would tell myself, 'but so is Bill Gates, and look what he accomplished!' At the beginning of my journey into understanding autism, I think that in the back of my mind I equated “high functioning” with “almost normal”.   It gave me relief and made the diagnosis more palatable. 

            Those were the days when I read the amazing success stories of children who were “cured” of autism.  I listened with rapt attention as my colleagues told stories of former students they knew who had “grown out” of their autism.  They assured me that the same would happen for my boy.  This is the window of time to pour on the therapies, I was told.  Wait too long and the window closes. 
I know I’m still at the beginning stages in this journey into understanding autism, but I’ve learned a few lessons along the way.  First, autism is not a disease that can be cured.  It is the neurological wiring of his brain, and this wiring will be his for life.  This does not mean that therapy does not have its place.  Therapy has already given Ben great tools to navigate the world successfully, to feel more comfortable in his skin and more in control of his emotions.  I know therapy will continue to help him blossom and grow.  I have watched with tears of joy as Ben has gone from that kid on the playground who wanders aimlessly on the perimeter to the kid who seeks out others to play.  The day that he asked another kid to play chase with him, my mommy heart swelled with pride, and I knew he was using the “chase me” game he had learned in therapy.

I have every confidence that Ben will be a successful adult, thanks in part to the therapy that he receives, but in equal measure to the unique functioning of his brain.  You see, I have learned that the autistic mind is a unique and special thing.  Ben has the ability to take in the world, all the little details of it, and process it in ways that we “neurotypicals” can’t.  And while this ability can be overwhelming at times, and he does become overloaded, it also provides him the talents of an amazing memory, an outstanding vocabulary, and a logical mind that can problem solve way beyond his years.   And, while I realize that every autistic individual is unique, and many of Ben’s skills and abilities have nothing to do with his autism, I think it’s important to understand that, just as he has brown hair and brown eyes, he has an autistic brain.  This is neither good nor bad inherently.  It just is.

            In those early days, on the rare occasions when I would tell others that Ben had autism, it would always quickly follow with the qualifier, “but he’s high functioning”.  I’ve since learned that not only are such labels misleading but they can be downright devastating.  For, you see, an autistic person who is nonverbal could easily be labeled “lower functioning” because many incorrectly assume that their intelligence is less than that of a verbal individual.  One only has to read the books or blogs by a nonverbal autistic individual to shatter this myth.  However, labeling a person as “high functioning” can be just as damaging.  The reason is simple.  Autism is a hidden disability.  If you saw my son at the grocery store or a restaurant, you would probably be surprised to learn he has autism.  He does not look like he has a disability.  We also provide him with constant interventions that, to the casual observer, may not even be detected.  I was not aware for the first four years of his life that I was even doing them, but they help keep him balanced and comfortable.  Therefore, when you see my son, who looks like any other kid, therein lies the danger.  

For you see, because he looks "normal", it becomes easy to expect him to act “normal” as well.  However, this does not change the fact that my son’s brain is wired a certain way that will not change.  By labeling him “high functioning”, there is a danger that teachers at school or others in society will think, “Well, if he just tried a little bit harder…” or “I don’t understand why he insists on…”   Or, “he did so well yesterday, why can’t he do this today?”  I’ve read too many sad stories of so-called “high functioning” autistic adults who suffer from depression and other disorders because of their attempt to fit in to society’s expectations.  These adults live their lives in a constant state of stress as they attempt to “hide” the person that they truly are.  They may “keep it together” long enough to make it through their day, but then they fall apart in the comfort of their own home.  And, while I want my son to learn how to be a contributing member of society, I can no more ask him to change his neurology than I could ask a person in a wheelchair to stand up and walk across the room. 

The other reason “high functioning” and “low functioning” labels don’t work is because, each individual has varying strengths and weaknesses.  Often called splinter skills, these levels are hugely varied.  For example, my five year old son has the math and vocabulary skills of a first grader but is almost two years delayed in his gross and fine motor skills.  He can remember the scripts to chapter books weeks after I have read them, but he has difficulty participating in a conversation.  To attach a functioning label to my son would not paint an accurate picture of the person that he is.  This is why labels aren’t helpful and I think why I get so irritated when I read his assessment reports that attempt to explain his abilities, but more on that later. 

Some parents talk of how their child’s autism label was “devastating” to them.  I have never felt that way, and the reason is simple.  The label did not change my son.  The label does not even begin to adequately describe my son, nor do I expect it to.  The label is a signal to those who interact my son to stop, pause, and consider that he processes the world differently.  The label has opened the door for services and wonderful individuals who have come into our lives, enriching both his world and mine.  In the end, the label is just that- a label.  It’s what we do after that really counts, and I am perfectly content to be in the front row cheering him on every step of the way.

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