Labels and Expectations Part 1: To Label or Not To Label?

Diagnostic labels – do they help or hurt?

Posted Sep 03, 2012

In my first grade yearbook, there’s a picture. A candid nearly hidden in a corner.  In the foreground is a diorama of an indian village, peppered with pilgrims – culturally inaccurate in all the typical ways. Standing behind the display are two boys. One gazes directly into the camera, star struck.  The other, caught mid-conversation, gazes at someone just out of the frame.

About a foot away is a little girl, wearing a winter coat, inside (in California). Me. A teepee in each hand, a goofy grin on my face, I seem completely absorbed in rearranging the objects in front of me. You don't see my eyes.  Unlike my classmates, I don't seem to notice camera. I don't seem to notice them, or anyone else. I seem to be completely in my own world.

The difference is so stark, and the scene so stereotypically autistic, I can’t help but think – How could they not know?

Along with that thought comes a lot of anger.  Anger at things I struggled through, that perhaps I didn’t have to.  The support that I didn’t get, that a diagnosis may have brought.  What might my life have been like with that level of self-knowledge?  I wonder.

Loving Lampposts -- Documentary by Todd Drezner
But, there’s another side to this as well…one that’s not so clear cut.  For all the value that a diagnosis can bring, it can also carry a lot of baggage.  Because, in the medical system, the first things parents hear about the condition are limits.  CAN’T and WON’T is often the first thing they hear.  This is something I have known for a long time, but I see new examples of it all too frequently.   Most recently, I saw a few examples while watching the movie “Loving Lampposts” – a documentary about autism.

One mother, Kristin Holsworth, says, “They gave him a 30% chance of ever talking, or being potty trained, or being able to feed himself. And they said that he would probably be institutionalized.”  Another, Cindy Walsh, says she was told that “…the best we could hope for was that they would be file clerks.” When I see things like this, my heart turns over inside me. I wonder what it must be like for these children, to have their entire life viewed through this paradigm.  How much does it limit?  

I think this had a lot to do with the fact that my parents didn’t much care for labels.  They saw it in terms of stigma – and they did not want that for me.  Especially in the wake of the prejudice and preconception they dealt with in the world.  They became, as Michael John Carley talks about in his discussion on the history of  autism, members of the group of parents he calls “anti-labelists.” People who dealt with stigma through the rejection of diagnosis itself.

This had pros and cons.  On the pro side, I was never faced with anyone telling me what I wouldn’t or couldn’t do because I was autistic. When my parents and I talked about my future, it was always in realms of possibility – often tied to my special interest of the time.  I loved planes and travel – locomotion.  Maybe I’d travel the world as a flight attendant.  I loved science and animals. Maybe I’d be a doctor, or a vet, or a researcher like Jane Goodall.  I loved drama and theater. I’d be up in lights one day, an Academy Award winner like Meryl Streep.  I loved language. Someday they’d see me at the UN, interpreting for some important dignitary.

On the other side, I was left to struggle with things that no-one else could seem to understand.  Not understanding some of these things, such as my literal rules-based thinking, problems with pain perception, and challenges with sensory input led me into situations that were sometimes life threatening. And, well, not having a label didn’t protect me from recognizing I was different. It just ensured that I didn’t have the vocabulary to talk about it – which led me to become deeply depressed.  If I was “normal,” why couldn’t I do what other “normal” people did?  I wound up concluding that it was something deeply wrong with me, as a person – which was extremely harmful.

 It takes courage to grow up and become who you really are.
When I look at my life, I often find myself struggling with the implications of all of these things.  I ask myself – would I really wanted to have been diagnosed as a child, or would the downside outweigh the positives?  There are times I waver, but overall, I think I would. I know that gaining the knowledge in adulthood, has a profound difference in learning about myself, and impacted many of my relationships for the better.  I am, in fact, more social as a whole autistic person, than I ever was when I considered myself a “broken” normal person.  

But I do wonder, as a society, how we better manage that flip side that I my parents so feared.  How do we prevent a label from being limiting?  Must it always be a trade off, or is there something we can do to change these dynamics? 

What do you think?

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