I recently read a wonderful post on BBC Ouch, by a guest blogger named Mark Neary.  In his blog, he wrote about how clinical jargon is used in his autistic son’s life, and how sometimes that jargon actually diminishes people’s perception of his son as a person.

I have encountered this same use of clinical jargon in the parents that I interact with as a public speaker on the topic of autism.  No longer exclusive to medical professionals and therapists, parents have adapted the use of more clinical jargon, but why?  Here are a few reasons I think may contribute to the widespread use of clinical terms to describe everything from finger tapping to immense talent in autistic people.

Categorization of the Unknown

Despite autistic people being noted for our need for routine, and logical compartmentalization, all human beings like to categorize.  Don’t think so?  Let’s take a visit by an insect as an example.  A bug, that we cannot identify, annoys a mixed group of people socializing by repeatedly flying into their faces.  At the height of their annoyance, someone swats it with a rolled magazine.  In a world where categorization doesn’t matter, this is where the story would end.  However, we all know that our next step would be to figure out what kind of bug it is.  Unless seated at the table with a biologist, each person would peer over the carcass of the dead bug, looking for familiar markings or body shape.  Some might even poke at it with a stick, in some bizarre effort to “get a better look.”  The conversation would end with some sort of conclusion about the bug, and at the very least, putting it in some familiar category such as bee, fly, or ant.  As you’re reading this, and especially if you are laughing now, then you can probably recall being at this table at some point in your history.

Parents are no different with their children.  Categorization begins at birth with the announcement of the child’s gender.  Based on this outcome, society then directs the parents in choosing a name, room color, clothing, and even toys society has deemed appropriate for the assigned gender.  As the child grows, other categories are used such as finicky, talkative, curious, etc.  Once school begins, categorization is placed in the forefront of all other aspects of the child, including the child’s preferences, and choices, especially those that lay outside of the “normal.”  Society shows parent’s that being categorized as gifted, or advanced are far more important than the child’s effort, as they award bumper stickers for Honor Roll students, but hand out tutoring and summer classes to children who fall outside the categories.  There is no school system wide reward for effort.

Add a disability to this whirlwind of categories, and parents begin to feel attacked.  Behavior modification techniques are put in place from sun up to sundown, personal choices of the child are all but ignored, and personality – the only real thing parents can connect to in their child – is stripped away one therapy at a time.

You think I have gone too far?  Then answer this; before I was diagnosed with autism, people referred to my ability to play violin as a talent, and even called me a “child prodigy.”  Since my diagnosis, my talent is now referred to as a “special interest.”  Why?

I am not at all against therapy, but a problem in the systems and approach by therapy is lacking a key element – the ability to separate personality from problematic, life inhibiting behaviors caused by autism.  The categorization of me into an autism model has provided more answers than problems, but when the diagnosis, and the following therapies, are not assigned limits of application, the diagnosis becomes a developmental corset.

The Blame Game that Follows the “E – Word”

When it was determined that autism was on the rise, society was not happy with simply stating “autism cases are on the rise.”  Instead, we had to resort to the E-word, Epidemic.  Much like the societal use of the words carnage, devastation, and horrific, when describing a negative event that falls short of that description (i.e. no death toll, just a lot of broken stuff, or Roseanne Barr cussing on Twitter) we have loosely misapplied the use of the word epidemic.

Up until the second half of the 20th Century, epidemic was only used to describe the spread of infectious diseases.  The semantic evolution of the word to include issues such as obesity and autism, only seem to be effective because of the sensational panic the use of the word attributes to the population.  Panic sells newspapers and prescription drugs, but it also demonizes everything that contacts the child, including the parents.  Adding epidemic to autism turns simple adjustments into drastic measures; it turns diet adjustments into chelation, therapy into neurological reprogramming, rightful emotional outbursts into aggressive threats that warrant restraint, delayed emotional processing into lack of empathy, and talents into special interests.

Where does this leave autistics?  Often times, it leaves us feeling broken and rejected.  Where does this leave parents?  It leaves parents feeling blamed for not doing enough, doing to much, or feeling like bad parents.  It leaves everyone seeing autism as a problem instead of a person.

It’s Nice to be Recognized

Recently, I had a meeting with three tremendously intelligent NT’s.  (I will not disclose the people or place, only because I do not have their permission to do so).  I had no idea why I was called into this meeting, despite their best efforts to explain it to me.  For so long, I have endured the back handed slaps of a society that could not understand me.  Following my diagnosis, the slaps became heavy handed pushing as I was expected to fix my “problems” and searing my accomplishments, sans college degree, with doubt.  How could I play the violin well and not be college educated or a savant?  Being a child prodigy, being a talented violinist who happens to have autism, knowing something deeply without learning just couldn’t be possible. But, this meeting was different.

As I sat across the table, I caught myself trying to explain myself.  I was guarded, and leery that I would never been seen as good enough.  As these three professionals patiently worked through a conversation with me, I realized I was being recognized and accepted.  What did it take?  What did these three do differently?  After all, they are immersed in the world of autism as researchers, and clinicians.

How is that possible?  Simple.  When they looked at me, they saw a human being, rather than a problem to be solved.  When they listened to me, they heard the words of an expert in living with autism, rather than a failure at living in society.  When they offered their hand shake, they offered their hand to a colleague, not to a child that should be led.  So, therefore, when they spoke, their words were filled with affirmation, and admiration.

Break Off the Corset

An autism diagnosis should lift us, not erase us.  Therapy should empower us, not limit our development.  The next time you meet someone with autism, be in awe of their immense ability to adapt.  Watch us.  Listen to us.  Recognize us.  Call us beautiful, talented, accomplished, intelligent.  See us not as an illegal immigrant, but a visiting Foreign Dignitary eager to make an alliance.  Love us.  And when you must, when we reach out for you, remember you are our seeing eye dog, not our trainer.

– LN