I’ve been thinking lately about the usefulness — or lack thereof — of labels. My parents are worried, concerned that in thinking about prematurity in terms of the various labels for which one is more at risk, that I’m falling into traps of negative thought patterns and self-image. They wouldn’t be far from the truth, since being self-critical, perfectionist, and overly worried have been traits of mine for approximately a lifetime. 

My mom, in particular, keeps challenging me: what’s the good side of all this label talk? 

So, I want to talk about labels. 

On the positive side, labels help us understand what’s going on. Labels work like words, as symbols or stand-ins for more complicated realities. The word “tree” to represent all the different variations of tall, green, leafy plants with woody trunks — I’m being unspecific here — that the word “tree” encompass. Diagnostic labels, of course, are far more complicated, and for a good reason; they are used to represent the complexity of a person’s behaviors, personality, thinking patterns, etc. 

I’ve been debating whether or not to have our Older Daughter undergo some form of assessment for learning challenges. She was a late talker, not saying any two syllable words until 18 months, and even then, for several years, her speech remained hard for others to understand. She still struggles, more than I’d expect for a kid her age and with pronouncing long words, with pronouncing “r’s,” and there’s something’s in the way of her figuring out not to start sentences with her/him/them (the third person).  Now in early elementary school, she struggles mightily with spelling, and recently told me as we worked on vocabulary that she can hear the word in her head, but she can’t always figure out how to pronounce it, which doesn’t help with how to spell it, either. She is, however, a bright, imaginative kid with what seems to be very impressive visual-spatial skills (making her in some ways the seeming opposite of her mother), and I’m slowly coming around to the conclusion that some kind of label – or a confirmation of its lack – might help us know how to further both her strengths and her weaknesses.  

On the negative side, though, the descriptions laid out in diagnostic labels tend to focus on the negative. The formal descriptions as laid out in the Diagnostic and Statistical Manual emphasize the deficits faced by those with a certain diagnosis, without also including the positive compensation that often accompanies a deficit.  As a great book I’ve been reading (Bright Not Broken: Gifted Kids, ADHD, and Autism) reminds me, once a label is in place, it becomes easier to see the deficits rather than the strengths. I’ve been spending so many nights helping Older Daughter with her spelling and vocabulary words for the week, that I realize I’ve taken less of the few minutes we have after work and after-school care and dinner to engage her in happier pursuits. 

Also on the negative side, diagnostic labels are constructions by the mental health to classify what’s going on with a person for both pharmaceutical treatment, insurance reimbursement, and assisting patients to better understand what’s going on in their lives, often at the level of behavior. For so many kids who start down the diagnostic road, one label gets stacked onto another in an attempt to explain what’s going on with that particular child, when in fact the reality is almost certainly far more complicated than simply stating “my child has X.” 

Prematurity, with its close association with learning differences and disabilities, offers one such reminder of the complexity of understanding a person’s traits, strengths, and weaknesses. As we’ve seen before on this blog, aspects of autism, ADHD, learning disabilities, and giftedness may be present in the former preemie kid, but they may be “idiopathic,” or arising from a distinct origin or cause in comparison to what commonly presents as one or the other of these “disorders.” 

I don’t want my child to become a label, and yet I may need the extra guidance that a label can provide.  

I don’t want myself to become a label, and yet I fear that in writing this blog, that’s exactly what I’ve been trying to do. 

Balancing the tension between a label’s power to help without loosing sight of the bigger picture: that’s the challenge with which I’m faced, both as an adult former preemie with neurodiverse quirks, and as a parent of two wonderful, complicated little girls. 

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