6.06.2012

Spectrum

The other day I was talking to a woman who's pregnant and has recently learned that the fetus she's carrying has Down syndrome.  She asked me several questions during our conversation, and one of the questions was about "the spectrum."  She said, "I know that there's a spectrum for Down syndrome.  Is your daughter just on the high-functioning end of the spectrum?"

I really question this whole "spectrum" rhetoric that's circulating around Down syndrome.  I don't think it's legitimate medical terminology, even if health care professionals are using it.  What does it mean, "the spectrum"?  How are we supposed to use that to categorize people with Down syndrome?

What I told the woman I was talking to was a story that I think captures my skepticism particularly well, so I thought I'd tell you all.

Since she was born, Maybelle's been friends with a girl I'm going to call Marie who's just two months older than Maybelle.  Last summer, we were hanging out at this family's house.  Maybelle was already really working on talking and reading last summer, and Marie wasn't doing much talking.  However, while we were at their house, Marie climbed up on the kitchen counter, got a jar down from the counter, and unscrewed the lid of the jar.  Inconvenient?  A bit, but let me tell you, she was demonstrating some serious gross and fine motor skills.  One full year later, Maybelle is talking up a storm, but she still can't unscrew a cap--not from the toothpaste, from a jar, from the milk, nothing--and she's only now learning to climb well enough that we're going to have to start childproofing our kitchen counters.

So:  where are these kids on "the spectrum"?  What does it mean to be doing quite well with reading but to have substantial delays in fine motor skills?  What does it mean not to be talking much, but to be physically conquering the world?

The notion of a spectrum suggests linearity:  some kids are doing well, they're high-functioning, and some kids aren't doing well, they're low-functioning.  In contrast, my experience has been that kids with Down syndrome are very much like all of us in the world:  they are doing quite well in some areas and are facing challenges in other areas.  There's no easy way to categorize these strengths and weaknesses--it's not as if some are inherently better than others.  Is Marie more high-functioning because she can use her fingers so effectively?  Is Maybelle more high-functioning because she can put words together?  Anybody suggesting something that simplistic is really misunderstanding what it means to be a person in the world.

So let me go back and revise what I said above.  I'm not questioning the spectrum terminology--I'm rejecting it.  Let's quit using it.

12 comments:

starrlife said...

I've heard the high/low functioning stuff but only heard the spectrum used for autism, huh! But I totally agree with you.

claire said...

And, as you have already noted, typical kids get to be good at some things and not good at others without anyone coming up with some idea that those kids can all be lined up in some spectrum of excellence. Instead with typical kids (as it should be for all kids) each kid is seen as an ever evolving package of challenges and opportunities, and ever changing strengths and weaknesses.

Anna Theurer said...

What an excellent post! I have never heard of a spectrum for Ds--as a parent or as a medical professional (I am a peds NP), but as the commenters above, I whole heartedly agree with you. I am certain if that woman asked me, I would have just gaped at her in shock. As you said, everyone has strengths whether they have Ds or not and I wish the rest of the world would see that. My daughter barely speaks and signs, but she is a climber and thinks nothing of strategically planning away to climb on top of her dresser to wrestle open that container of vaseline. Sadly, I know that many would think that due to her lack of speech she is really "low-functioning". All children (and adults for that matter!) Ds/autism/typical/etc have various strengths and weaknesses. Anyway, good post!

Leah said...

I haven't heard spectrum used for Ds either, except by people who don't know much about it. I recently read about it in a blog and tried to look it up but didn't find much. But I love how you describe why it doesn't work for kids with Ds. Completely true.

Aaron said...

I don't readily agree about rejecting the spectrum terminology. However, that's because I don't think of a spectrum as a 2 dimensional linear concept. I think of this as more of a 3 dimensional area of space. No categories, no boxes. Just flexible data points floating and moving through space and time. There's multiple data points and axes because humans are complex and there's no way you can even try to put an accurate label on someone with one data point.

So, I think the spectrum terminology could be useful as long as people have the right picture in their head.

Elizabeth said...

I'm glad that you're rejecting it -- it's sort of like the whole What To Expect When You're Expecting bullshit, right?

Alison said...

The What to Expect When You're Expecting bullshit--indeed! Rejected! I helpfully had friends who told me to reject while I was expecting, so I never got sucked in.

It surprises me that several of you haven't heard "spectrum" used for Down syndrome. I hear it often, but now I need to think of where I'm hearing it. Hmm. I'll have to get back to you.

And Aaron, I feel certain that folks aren't thinking of it in the complex way you are. I think it really serves as shorthand for high-functioning and low-functioning, which serves as shorthand for "Maybe worth having around" and "Probably not."

Jess said...

I'm new to your blog but I've been doing a lot of reading with this blog hop getting all sorts of opinions from different people.

It seems that the bottom line is people want to categorize everything. We categorize our schools based on testing, our churches based on differing religions, each other based on ethnicity, and kids with disabilities based on the disability and/or the "level" that is "shown." I could be totally off my game here but what if these categories, low versus high functioning, is how we cope with all the different people?

I'm not saying whether it's right or wrong. I think this entire subject is personal. Every blog I have read has different peeves about how others talk about their children.

Sometimes it just seems that by putting so much energy into how our kids are being described or perceived is actually putting pressure on ourselves to make sure everyone knows our child is "normal" (not that there is such a thing).

Just some thoughts of mine as I'm contemplating all these ideas. Thanks for posting. :)

Tawanda Bee said...

I smile as I think of my own children. One walked at 81/2 months old and one did not walk until he was 15 months old. I remember hearing that there was a wide spectrum of time considered "normal" for when kids start to walk. I just knew that they would walk and talk and do whatever it was they were going to do when they were ready. And not before.

Same with potty training, giving up their bottle, talking... All of it. They were right on time... With themselves.

I work with Friends Life here in Nashville, a nonprofit for young adults with disabilities, and I am getting ready to teach a series on Conflict Management. Some of the friends have DS, some have difficulty with language, some have physical limitations, some have complex non-diagnosable issues (my niece is one of these). There is a wide spectrum of disabilities. I use the word spectrum like I use it in talking about my own kids.

It is a range. Not a range to put the Friends in a box, but a range that helps me paint a picture of the students i will be teaching. And just like any other workshop I give, I want to design activities that will be engaging for a particular audience.

Yes I reject the word spectrum when it is used to define limitations. And I will keep the word so I can use it to describe possibilities!

Tawanda Bee said...

I smile as I think of my own children. One walked at 81/2 months old and one did not walk until he was 15 months old. I remember hearing that there was a wide spectrum of time considered "normal" for when kids start to walk. I just knew that they would walk and talk and do whatever it was they were going to do when they were ready. And not before.

Same with potty training, giving up their bottle, talking... All of it. They were right on time... With themselves.

I work with Friends Life here in Nashville, a nonprofit for young adults with disabilities, and I am getting ready to teach a series on Conflict Management. Some of the friends have DS, some have difficulty with language, some have physical limitations, some have complex non-diagnosable issues (my niece is one of these). There is a wide spectrum of disabilities. I use the word spectrum like I use it in talking about my own kids.

It is a range. Not a range to put the Friends in a box, but a range that helps me paint a picture of the students i will be teaching. And just like any other workshop I give, I want to design activities that will be engaging for a particular audience.

Yes I reject the word spectrum when it is used to define limitations. And I will keep the word so I can use it to describe possibilities!

Crittle said...

I haven't heard the spectrum terminology used by medical professionals in regards to Ds, but I have chosen to use it myself when describing my child and others with the same dx. To me, it seems unfair that those with ASD, for example, are given this huge berth of possibility while those with Ds are pigeon-holed. In that regard, I feel a spectrum is desirable. I think we all have a spectrum of abilities, dx or no. My husband excels in nuclear engineering knowledge; I do not. No one seems to have a problem with that.

So, yes, I refer to a spectrum, but my intent sounds different than what you're referring to. I come to that conclusion because I DESPISE the use of HF/LF labels. That's one part of the ASD terminology that I rebuke. But I do understand how using one part may make it hard for some to not automatically accept the other.

I do get your point and I don't totally disagree. I use the term, but

Crittle said...

Ack! I was looking for that sentence at the end! That's what I get for responding from my phone. Weird stuff happens. I hope it still makes a little sense.