Labels -- they're not just for designer jeans

Let me get right to it. 

Ean is labeled.  To the gills.  He has an IEP and a school file filled with official-looking papers from psychologists, neurologists, occupational therapists, speech pathologists and the like.  The files are filled with terms like aspergers, dyslexia, visual-motor learning disability, pragmatic language delay, dysgraphia, and on and on and on. 

Not only does Ean's school file contain all these labels, but Rich and I have also made sure Ean is aware of each one of them and understands what they mean.

There is a big debate about the use of labels for children like Ean -- children who don't have obvious special-needs.  Children who are "quirky" or "just different" or "might grow out of it". 

I've heard all the arguments about why we shouldn't label kids like Ean.  People worry that the labels will carry a stigma that will result in bias from teachers and, eventually, potential employers.  People worry about the labels resulting in pigeon-holing, excluding the kids from opportunities otherwise available to "typical" kids.  People worry that the labels will result in some sort of self-fulfilling prophecy -- both on the part of the parents and the child. 

There are lots of things to be concerned about when it comes to slapping a label on your child -- not the least of which is (what often feels like) a cultural backlash against parents who have children with Asperger's, ADD or other similar diagnoses.  Critics like to claim that the rise in prevalence in many of these disorders is largely due to parents who try to use a DSM-IV-approved diagnosis to explain away any variances in their child's development. Or even due to  overly-neurotic helicopter parents who think it's somehow "vogue" to have a child with an attached acronym.

While I can't speak to the notion that a parent might think an ADD or AS diagnosis is some sort of chic accessory for their child (although I actually did read an article suggesting just that!), I can sort of understand the use of diagnostic labels to address what used to be considered normal developmental variability.  After all, our educational system is stretched to the point that there is no longer any tolerance for variances in learning styles or developmental readiness -- at least in the mainstream classroom.  Teachers are forced to teach to the test and then move on.  If a child isn't keeping up, they get left behind.  There's no time for re-teaching.  There's no time to focus on the child who needs a little extra instruction.  There's no time to assess individual learning styles and tailor lesson plans accordingly.

You know how you get more time for your quirky child?  You know how you get them the best chance at mastering state-mandated skills? You get a diagnosis.  A label.

I'm not a teacher or an educational psychologist, but I'd bet my new dishwasher that some of the kids walking around with acronyms wouldn't need them if our educational system were a bit more progressive and accommodating (and better funded).

I'm digressing...

I wanted to talk about our labels (well, Ean's really) and why we chose to follow through with the diagnostic process and subsequent alphabet soup of acronyms -- and then took the next step and shared the information with Ean.

 I've written about getting the actual diagnosis here and here, but here's the Cliff Note version: 

Early delays in motor-skills and and inability to follow basic directions (Rich expressed concern, I dismissed it as "every child develops at his own pace"), sensory defensivness (would freak out at many sounds -- including scotch tape coming out of the dispenser), apparent disinterest in other children.   There were other "quirks" as well, but I dismissed them all as harmless and unrelated. By the time he was in pre-school, it was clear that there was something very amiss with his development.  In an attempt to convey the seriousness of her concern, his teacher (a former secondary special-ed teacher) told us that she didn't think there was any way he would survive in a mainstream kindergarten.  That statement, though harsh, snapped me out of my denial and started us on the road to a diagnosis.  He was diagnosed with Asperger's by a pediatric neurologist in March of 2008.

By the time his diagnosis became official, he was already in his 7th month of kindergarten.  And, thank God, it was "only" kindergarten. 

Those first months without a diagnosis -- and subsequent accommodations and services -- meant that Ean was the quintessential square peg being shoved into a round hole.  Visual-motor delays meant he couldn't copy basic information.  Dyslexia made it impossible for him to keep up with the reading curriculum.  Difficulty processing information meant that he couldn't follow multi-step directions. Sensory defensiveness made the din of a kindergarten classroom overwhelming.

Without an "educationally relevant" diagnosis and label, square peg children like Ean are expected to fit into round holes. They become misfits.

Without an "educationally relevant" diagnosis and label, children like Ean are held to academic standards that they are not capable of meeting without supportive services.  They become under-achievers.

Without an "educationally relevant" diagnosis and label, children like Ean have no name to assign to the source of their struggles.  They become confused and angry.

Think about a child who feels like a misfit.  Who is a consistent under-achiever.  Who is confused and angry. Who doesn't understand why he can't pass the test.  Why he can't make friends. 

Think about that child in kindergarten. 

Now think about that child in middle school.  And high school.

The misfits.  The underachievers.  The confused and angry. 

They are at high-risk of becoming our drop-outs.  Our drug-addicts.  Our gang members.  Our suicides.

These consequences are not just paranoid conjecture.  Study after study demonstrates significant relationships between learning/developmental disabilities and drop-out rate, crime, substance abuse, gang membership, and suicide.  These relationships exist regardless of the presense of absence of a diagnosis while still in school -- meaning that it is the existence of the disability and NOT the diagnosis that causes the elevated risk.

It's pretty scary stuff.

So what can we do to mitigate the risk?  To give our children the best chance at excellence?

I think it starts with labels.  We may not like labels. We may think they confine, define, and limit.  We throw around terms like "self-fulfilling prophecy".  We worry that our children will use them as an excuse for laziness or as a justification of opting out.

And those are all very real possibilities if we chose them.

But there's a powerful flip side to a label.  

Without a diagnosis or a label, there is no buffer between the behaviors and struggles experienced by special needs children and their sense of self.  In the absence of a label, the boy with ADHD just knows himself as impulsive, out-of-control, bad, rude.  The girl with dyslexia just knows herself as stupid and a failure.  The kid with Asperger's just knows himself as weird or disorganized or clumsy. 

Impulsive, out-of-control, bad, rude, stupid, failure, weird, disorganized, clumsy.  Those are painful descriptors, and when you have no other explanation for them, they simply become part of your identity.  No wonder these kids are dropping out, drugging up, and joining gangs.

By giving these kids labels we can help them deflect these descriptors.  The boy with ADHD will still struggle with impulsivity, but he can grow to understand that his lack of self-control is a characteristic of his disorder and not a question of his character.  The girl with dyslexia will still struggle to learn to read, but she can get angry at her disability instead of herself.  The boy with Asperger's will still struggle to make friends, but he might not question his self-worth quite so much.

We told Ean about his Asperger's  towards the end of 1st grade.  He already knew that there was something going on -- he was receiving occupational therapy (both privately and through the school) and speech therapy.  He was also the highest functioning student in his self-contained ESE classroom (where he spent about half the day -- with the other half in an inclusion class). 

 "Everyone's brain works differently" was all we had really told him up until that point. 

We wanted him to know and understand more though -- so early one morning, over coffee and blankets -- we told him. 

We started the conversation by acknowledging his struggles.  His struggle learning to read.  His struggle to remember things.  His difficulty paying attention.  How much it hurt to be called weird.

We told him that he didn't  have these struggles because he was stupid or bad or weird.  We told him that he had those struggles because his brain worked differently -- and that his type of difference had a name.

We told him that Asperger's may make some things harder for him, but it would also make some things easier for him. 

We told him that lots of famous people were thought to have Asperger's.  People like Vincent Van Gogh (who he had been learning about in school), Albert Einstein, George Lucas (creator of Star Wars!) and Satoshi Tajiri (the creator of Pokemon -- that one was a big hit!).

We told him that even though he might have to work a little harder that he could be every single bit as extraordinary as Einstein and Lucas and Tajiri -- but the one rule was that he was never, ever allowed to use Asperger's as an excuse.

We asked if he had any questions  and he wanted to know how long we'd know.  We told him that we found out when we was in kindergarten.   We reminded him of the visits we made to the neurologist and about some of the tests they did (he had an EEG to rule out absence seizures). 

His next question was "what took you so long to tell me?!?".

We didn't have a great answer for that one -- I think we just muttered something about wanting to make sure he was ready to understand. 

It's been 2 years since that conversation, and the topic of Asperger's almost never comes up.  Every once in a great while Ean will ask if a particular struggle is because of his Asperger's.  Sometimes it is and sometimes it isn't, and we always answer honestly. 

If we hadn't labeled him, he would still be very much aware of his struggles, but instead of understanding them in the context of a neurological syndrome, he would be left simply feeling flawed and inadequate.

Around here, we think of this label as a gift.  We don't view it as a limit or a constraint -- quite the opposite, actually.  Ean does not have to burden himself with the belief that he is stupid or inadequate because he has to work harder.  He knows why he has to work harder, and he's accepted it as part of who he is.

He dreams big and has no doubt he can will someday join the ranks of Einstein, Lucas, and Tajiri.

He's our Aspergian Superhero and he wears his cape with pride!!!

 

Comments

[Kelly]

http://www.amazon.com/Aspergers-What-Does-Mean-Me/dp/1885477597

This is an amazing book that I highly recommend for kids who want to learn more about their ASD.

[Michele]

LOVE THIS! this is a great post Tricia! thanks!

[Paula]

As always, thanks for your thoughtful (and thought-provoking) insights.