“One of the most significant functions of language is quite beyond our conscious control. We might even say it controls us. It is the function of establishing our identities. Few things are closer to our personal, group, or national identities than is our language.” -Melvin J. Luthy
The idea of language and the way words form our identity has been on my mind a lot lately. I recently attended the Angelman Syndrome Foundation’s 2017 Biennial Conference in Arizona. It was fantastic being there for so many reasons, but one reason in particular was hearing from brilliant AS moms who are also scientists, advocates, and educators.
One of those women was Dr. Rebecca Burdine. In her presentation she talked about some of the key components necessary to having successful clinical trials. Clinical trials are a big topic in the Angelman world right now, and all of us are hoping and working towards seeing a viable treatment or cure for Angelman Syndrome. She talked about how it’s necessary to have baseline testing, because in order to know if a pharmaceutical is successful, we need to be able to measure improvement. And one of the areas we’d like to see improvement in is cognition.
But what I really loved about the presentation was her suggestions on changing the language we use when referring to the results of these tests.
How many of you parents out there have been told your school age child has the cognition of an 18 month old? Or maybe a 24 month old? I have. Or worse yet, how many of you have been told this about your teenage or adult child? It makes me cringe.
Sure, it’s important to measure improvement in cognition. This is true for the educational world and for clinical trials. However, sadly most testing methods are still not designed to accommodate those with complex communication needs and tend to rate these individuals very poorly, and often very inaccurately.
The fact that these results are being interpreted into an age equivalency is garbage. Seriously, it’s just rude and inaccurate. In today’s world, administrators of these tests see that a child received “X” score and then tell the parents that that’s an 18 month old intelligence, for example. Or that is a 24 month old intelligence. I’m sorry, unless your test can accurately determine my child’s intelligence, no age equivalency is necessary.
That is one thing Dr. Burdine suggested- keep the numeric score and ditch the age equivalency. In clinical trials, this would be an easy switch. Scientists would merely need to administer the cognition tests prior to the trial and once again after it’s complete, and then compare the two scores. If the numbers go up, then there was improvement. Seeing improvement through individual testing is what is important, not being held to some preconceived age equivalency.
Unfortunately many parents fall into this trap of labeling their own kids with arbitrary age equivalencies. Might I suggest we move away from this? Let’s stop labeling our kids with some random age equivalency way below their actual age, or even if its just one year behind. Let’s presume competence every time. It is always the safest assumption. How do you think these individuals feel hearing the very people who love and care for them say things like this, often right in front of them? Will our language strengthen their resolve to learn and grow or hinder it?
Another set of words Dr. Burdine suggested alternatives for were the labels “high functioning” and “low functioning”. Omigosh yes! How many of you parents out there have heard your child described in either of these ways? I have. For some reason (I’m not really sure why) the world has decided that we need to attach one of these labels to all neurodiverse individuals in order to describe them.
What do you think of when I say the words “high functioning” or “low functioning”? For me, I automatically think of some type of machine, maybe an appliance or a car. Or maybe even a vacuum cleaner! It makes me think of the way one of these machines performs or behaves.
What if I was a seamstress and I found out that I was going to have to work with a “low functioning” sewing machine? Maybe it was my grandmother’s and had the foot pedal to power it instead of being one of those fancy modern ones with all the electrical components. I might think, “Yikes, this is not what I really want. I’m not even sure if this can produce anything worthwhile.” “How could this possibly perform in a way that would make anything complex or beautiful?” My expectations would be pretty low as to how this machine would perform. I might not even bother to give it the time of day. No amazing gowns or suits coming out of this thing!
But what if I was told it was actually a high functioning sewing machine because of what it could produce. Even though its mechanics worked different or a little slower than modern day sewing machines, it was known to produce some of the world’s most amazing garments. It had been used by seamstresses who knew its worth and potential to create incredible beauty. I would probably look at that machine differently. I might take the time to learn how to use it in a way that would allow it to craft beautiful creations. The problem of its functionality would lie with me because of my preconceived notions, not the machine. And if I knew its potential, I might just put forth the greater effort. Language has power to create identities and potential.
My biggest problem with calling anyone high or low functioning is it automatically triggers a response in how we view these individuals’ intellect and potential. Children who are labeled as “low functioning” tend to get less academic resources because they are after all, “low functioning”. They are often perceived as unable to learn academics beyond the basic alphabet. Tell me how you would feel after 13 years of identifying your name and doing alphabet puzzles. This labeling type of language implies a lack of intelligence in these individuals and often damns their access to further education. I *hate* this label. But “high functioning” isn’t any better. It’s still ascribing an unnecessary label and makes a quick judgement about that individual’s competency or ability to perform.
I sure as heck am glad that people don’t ask my husband while I’m standing next to him, “Is she high functioning?” Oi! Can I ask- what would we be basing this off of? Because some days I can barely put one coherent thought together in between cleaning up pee or peanut butter off the floor!
But many people tend to ask me, often with some curiosity, “Is your daughter… high functioning?” I’m not really sure why people find this necessary information in order to get to know her better. Granted in the Angelman world, there is a great deal of variance in how individuals are affected. And up until now, my best response has been that my kids have been less physically limited than others. Their bodies have allowed them to do a lot, sometimes a lot more than peers their age who have AS. But again, why do people need to know this?
I have unsuccessfully been trying to figure out a better replacement for these labels, and I am SO happy Dr. Burdine shared a positive alternative. She suggested that instead of “high functioning” and “low functioning”, we use the terms “less affected” and “strongly affected”. Yes! Yes again! In our family, our children are less affected by Angelman Syndrome, which tends to be a generality of the genotype they were born with.
But again, we need to be careful in using even terms like these. The only real reason I can think of why this information could be pertinent, would be in a setting (like at school) where it would be useful to know what type of support the individual would need in order to succeed. It should *never* be used as a tool to deny access to education or resources. It should *never* be used as an excuse to baby talk someone or ignore them. On the contrary, this information should only be used to determine the level of support the individual needs in order to succeed in academia, in life, in relationships. Our kids do not need to be manipulated. They need to be taught and included. And they need the right support in order to do this.
I am still learning how to support my daughter. It’s an ongoing process! There is so much I didn’t know when Covey was here and I regret a lot. He always managed to beat the odds anyway and prove all those tests and labels wrong. I am so grateful for him and all he taught me. And all I can do now is change moving forward. We all do the best with the knowledge we have when we have it, and I’m trying to learn more constantly so I can be a better parent and advocate and support for my daughter. I won’t use language like “high functioning” or age equivalencies to describe her. I will use words like intelligent, creative, dancer, insatiable learner, friend, food critic, lover of animals, kind, and infinite potential… just to name a few!
Please be mindful of the language you are using. And look deep to determine why you might be tempted to use labels like “high functioning” or “low functioning” to describe someone. Please consider the alternatives “less affected” or “strongly affected” if you want to ask someone about their neurodiverse loved one, or if you are talking about your own child. Let’s change the way we speak. Let’s give these individuals a better identity through the language we ascribe to them.