When we found out my youngest daughter, JJ, has Rett Syndrome, the genetic counselor who helped deliver the news told me that the diagnosis was accompanied by intellectual disabilities. I knew I would love my girl no matter what, but I felt like I needed to be sure of the facts. “So everyone with Rett Syndrome is intellectually disabled?” I asked. Yes, the woman assured me. Everyone. I didn’t know how to wrap my head around this, but I trusted this woman implicitly. She was a genetics expert. If she said it, it must be true. After all, people with Rett Syndrome didn’t have use of their hands or their vocal cords. They often had breathing and swallowing difficulties, as well as mobility issues. It was easy to believe their intellect would be affected too.
A few days later I spoke to someone at the International Rett Syndrome Foundation. This woman told me about her daughter—a young girl attending kindergarten and learning to read and write with the aid of an eye-gaze device. There was as much conviction in this woman’s voice when she spoke as there had been in our genetic counselor’s. “These kids are smart,” she told me. “You get them using a device and you realize how much is really in there.”
Now I was just confused. Which was it?
Everything I read about Rett Syndrome in the official literature—scientific studies and websites describing the diagnosis—mentioned intellectual disabilities. But the parents and therapists I was connecting with told a very different story. There were children with Rett Syndrome who were reading, writing, playing games, graduating from high school, even going to college—all with the aid of their eye-gaze devices. These were people who made jokes, played tricks on their exasperated parents, and showed an understanding of words and concepts they had never been formally taught. The picture of everyday life with someone who had Rett Syndrome was very different than that painted by scientists, doctors, and researchers.
This led me to become interested in the ways in which we measure intelligence in people with disabilities. But the research I did only raised more questions than it answered. How can we know what goes on the minds of people not in control of their bodies? How do you measure anything in someone who can’t speak or use their hands? And—most importantly—why do we use tests originally designed for able-bodied, verbal people to measure any of this?
It’s an age-old dilemma we’re all familiar with: square peg in a round hole. But when your daughter is the square peg, the stakes feel very high. Of course, I wouldn’t love JJ any less if she had an intellectual disability, but it’s an important thing to know about your own child. Otherwise, I risk either asking too much or too little of her. Unfortunately, I know there will be people who judge my girl’s intellect, not on long periods of close observation, but on what the doctors and internet tell them to expect from her. I doubt the results will be good.
I’m not the only one worried about how we measure the intellectual abilities of children with Rett Syndrome. A lab in Boston is working on a better way to measure cognitive function in these individuals. Scientists are minimizing verbal and motor requirements on a well-known early learning assessment and, instead, administering it with an eye tracking computer. Once the questions were adjusted like this, researchers discovered that some children were able to perform at, or even above, their age level. It appears that when we put aside the things these children can’t do with their bodies and, instead, focus on the things they can do, we start coming much closer to the truth.
Despite these encouraging results, I still believe we need to reserve judgment when it comes to measuring the abilities of someone like my daughter. Many people with disabilities have significant barriers to learning and communication. How can you expect someone to surmount all of these barriers during one particular test? How do you ensure that they are comfortable enough, have enough time to process, are asked the questions the right way, and that their responses are interpreted correctly? Most importantly, how do you factor in all the things these children have missed out on over the years? Humans learn through what they see, hear, and touch, as well as through back-and-forth conversation. For many people with disabilities, these particular paths to learning are blocked or nonexistent. Yet these individuals are often still compared to their peers—people who have had years of natural, experiential learning.
There are also many types of intelligence not valued enough to be included in cognitive assessments. For example, if “maximizing your potential” were a category, my youngest daughter would get full points. Considering what little JJ has to work with, she has made some stunning cognitive achievements. She hasn’t held a single conversation in her life, let alone had any kind of formal language instruction, yet she has learned to understand the English language fluently. She grasps complex concepts like time and love, as well as things like weather patterns, daily routines, and family relationships. She also communicates in as many ways as her body will allow. She uses her mouth to say a few approximations of words, her eyes to signal yes or no, and her hands to push pre-recorded buttons or slap picture icons.
There’s another kind of intelligence in which JJ excels. I call it “sneaky smart,” but at its root, it’s simply the idea of resourcefulness. My daughter has become extremely adept at manipulating her environment and at problem solving to get what she wants. JJ often “plays opossum” and pretends to sleep in order to escape therapy sessions or medical visits she doesn’t like. She also regulates the amount she eats and drinks when she wants to gain access to a new food, beverage, or person to feed her. Before we got her breath holding episodes under control, she would trigger clusters of episodes until we took her outside for a walk. The minute we did, the episodes would magically disappear. JJ has so little mastery over her body, and yet by using the few functions she can control—sleeping, eating, drinking, breathing—she can achieve a surprising number of things.
JJ is not the only person with disabilities and differences who exhibits this kind of resourceful thinking. When I posted on a forum for parents of children with Rett Syndrome and asked if anyone else’s child was as “sneaky smart” as mine was, the answers poured in. Parents posted comment after comment about girls doing similar things—playing opossum, pretending to cry, only doing therapy exercises when and how they chose—and often smirking, smiling, giggling, or laughing afterward. Like JJ, these children manipulated their environments and exerted control in whatever ways they could. If I were trapped in a body with the same limitations, I’m not sure I would be half as ingenious.
Even after reading research studies, observing JJ, and talking to other parents, I still felt uneasy. I hadn’t come across the right source of information to truly put my mind at rest. Then it came to me. Every six months my family travels to a clinic to consult with a neurologist who specializes in Rett Syndrome. This doctor has treated a variety of children with my daughter’s disease over the course of many years. She knows her patients’ personalities, methods of communications, and families intimately. If anyone would know what to tell me, it would be a specialist with years of on-the-ground experience. So during our next visit, I asked our doctor what she knew about the cognitive abilities of people with Rett Syndrome. The woman just shrugged and answered me matter-of-factly. “Some of the girls have intellectual disabilities, and some don’t. It really depends. In your daughter’s case, it’s too early to tell. I don’t know her well enough yet.”
I’d finally found someone qualified to answer my question the right way, only to find she had no real answers at all. But I wasn’t disappointed. Our doctor had confirmed what I’d come to suspect—that with someone like my daughter, it takes time and patience to understand her intellect properly. First, we need to discover the particular ways in which she learns and communicates—a process that can take years. In the meantime, we shouldn’t pretend to have answers we can’t possibly have.
I’m certainly not going to.
Instead, I plan to love my hard-working, resourceful girl for who she is and to learn everything about the ways in which she thinks. There are no hard and fast answers in this world, and I will never again trust someone who claims that there are. If there’s anything I’ve learned through all of this, it’s that sometimes the smartest answer is also the simplest one.
I just don’t know.
What are the ways in which your child is ingenious, resourceful, or creative? Have they been assessed or tested? Do you feel like this was done fairly and that the results were representative?
Let me know in the comments below.
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