She’s on the spectrum.

“She’s on the spectrum.”

For awhile those words were my best friends. For the first year after Mia’s diagnosis (maybe even longer) I would utter those words to anyone who would listen to me talk at length about my daughter’s diagnosis. I would whisper those words in the darkness at night. They were the sutures used to mend and hold my broken heart together. They were the balm that soothed my chapped and cracked soul.

Although, fundamentally true; they were also a lie. A lie and a ploy with words to lessen the pain. A pain felt deeply at the use of the word autism; especially when used to describe my daughter. Autism, a word I was so afraid of. A word so greatly stigmatized in our culture. A word synonymous with so many hurtful words – dumb, pathetic, stupid, worthless. The word autism evoking in the listener a strong sense of pity; directed at both the autistic and their parents. And, even though I did not want my daughter to be branded with those words, that still was not my motivation for repeating the sentence time and time again.

My motivations lay in a deep rooted denial. A denial that grew larger than the tallest of oak trees; a denial that could not be uprooted by the strongest of winds nor the toughest of storms.

The sentence “She’s on the spectrum” allowed me to admit her disorder to a certain extent, but not beyond that of my comfort level. It allowed me to say she had autism without actually saying she had autism. It allowed me to go only as far as I would like without ever acknowledging the root cause – for there can be no spectrum without autism. To be on the spectrum is to have autism. No matter where the placement is.

I felt that if I only admitted that she was “on the spectrum” I would be in some way fooling people into believing that she wasn’t “full blown autistic”. Maybe the person I was trying to fool was myself. Although I was the person who first noticed those red flags in my infant daughter, although I was the person who sought out early intervention therapies, and although I was the person who screamed on the top of my lungs “Diagnosis: Autism”,  I still was the one having trouble with the label. And even though I knew deep down inside that it changed nothing about Mia, I still had trouble with the word.

Speaking the words “She is on the spectrum” made me feel as if I were saying she is only slightly autistic. Which sadly eased my baseless suffering. Those words were reminiscent of the label “high functioning” autistic. Which I was using in an inappropriate way; as if one in that category was in some way superior to that of a “low-functioning” autistic; as if one has more value and worth than the other. As if, being autistic automatically meant you were less valuable than the average person.

By saying “she’s on the spectrum” I was, quite literally, placing her above other autistics – in a futile attempt to make her worthy. In a futile attempt to make us less pitiful. In doing so, I was adhering to the common belief, whether stated or not, that lies in the subconscious of ALL neurotypicals. The belief that we are in some way superior, and if we are superior then those underneath us must be ranked accordingly – with the “high-functioning” autistic coming before that of the “low-functioning”.

Somewhere along the way I realized how absurd the notion of rank was, how absurd it is that we adhere to the common belief of a neurological hierarchy – societies ladder of worth, positioning one person on a higher rung than another based on ability or disability started to sound foolish to me.

It wasn’t until I realized how ludicrous of an idea that was that I saw the error in my sentence. It wasn’t until I realized this that I could freely and proudly speak the word autism. (And then I had to realize there is a proper way in which to offer up this information to people – which took me even longer to learn.) It wasn’t until then that I finally grasped the meaning in the often repeated phrase “all men are created equal” that I could abundantly love and respect, not only my daughter, but every person on this earth. It wasn’t until this that I could entirely appreciate all differences. It was only with this information that I was able to weld the ax to cut down that deep rooted, taller than an oak tree, denial.

And I thank G-d daily that I did. I thank G-d daily that he provided me with knowledge enough to take up that ax and strike with precision at such a nonsensical idea. And it was only then, with that tree cut down, that my fallaciously broken heart and soul could finally recover.

(Mia with Santa in 2009 around the time these words were used often.)

 

For an Autistic’s perception on the “Grading of Autistics” click the following link: http://ollibean.com/2013/01/19/autistics-grade-autistics/?result=search

 

2 thoughts on “She’s on the spectrum.

  1. I love what your saying here, your personal journey. I think sometimes it’s a very accurate description. Some children, many children start in one place and through, therapy, love and nurturing end up in a very place on that spectrum. For you it was a way out, a way to stay in denial, but sometimes it’s just the truth. I’m sure you have days Mia’s in one place on the spectrum and others where she is in a different place, she is always Mia and she is always awesomely autistic! Please keep in mind that most people I know on the spectrum are some of my favorite people

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