A Measure of Intelligence, page 23
Esbensen also recognizes that there are subtests on the Stanford-Binet and other IQ exams that do not provide accurate information about the abilities of people in the bottom 1 to 2 percent of scores. On most IQ tests, if a person scores below a particular threshold, for example an IQ score of 40, the assessment loses nuance, and the potential for error is huge. Two kids who have very different strengths and weaknesses could have the same low IQ score. But that number would indicate very little about individual needs. At the same time, the bell curve is set up to provide a great deal of information about the difference between a score of 100 and 120. This has led to a lack of reliable and valid cognitive assessments for people with intellectual disabilities like Down syndrome, arguably those who need them the most.
I find it helpful to think about how this information bias also informs the typical grading scale in school. There is quite a bit of nuance provided between an A and A– or a C+ and C, but very little about anything below an F, usually a score of 60 percent or below. I would want to know and celebrate if Louisa improved her score from a 30 percent to a 55 percent, but usually we don’t see that kind of improvement as being particularly important. It is all designated as failure.
I asked Esbensen why people with Down syndrome are not included in standard norming procedures. In other words, why isn’t the scoring of IQ testing designed to tell us information about those who need help the most? I felt like I knew the answer to my question before I finished asking it. “It’s the fault of the bell curve, really,” Esbensen answered. “There are fewer people in the overall population that have an intellectual disability than do not. And so, in this logic, it follows that psychologists would know less about people with low IQ scores. The bias is built into the science of scale development.”
I understand that, to many, this might not seem like a bias at all. The system is doing what it should, focusing on the majority and allocating resources to the most people. That is one way of looking at it. For more than a century, the bell curve has told us who is in and who is out, who matters and who doesn’t, who belongs and who has to go it alone. But there are other ways of considering what we owe each other, especially people who are not part of the bell curve’s crest. To start, it would involve letting go of a belief in fixed hierarchies and stable definitions of people’s worth. We would need to turn to structures that value connections over categories. Rather than identifying her as part of a small, insignificant percentage, I would like a world that sees Louisa as one of its valued members and welcomes the unique contributions she can make. I would like a world that sees the support and extra help that Louisa needs as a chance to provide access to someone who deserves it, rather than as an inconvenience, time taken away from faster lesson plans and a more efficient classroom. It may not be easier, as it is certainly more convenient to just forget about those in the minority. But as my experience with college students constantly reminds me, those in the majority aren’t well-served by our current ways of understanding intelligence and success either. We would all benefit if we looked for new ways to recognize how much a person brings to the world.
Historically, psychologists focused on diagnosis. If a child’s IQ was below 70, then that was all they needed to know. But now, more tests are providing extended scoring to recognize the unique cognitive profiles of those with low IQ scores. Through her research on the accuracy of certain cognitive tests, Esbensen is pushing for more. Before strengths and weaknesses are assessed, she wants to be sure that people who score lowest on an IQ test can engage with the tasks they are asked to do in the first place. Can a list of fifteen words to remember be shortened to seven? Will kids wear out because of attention span? Are test-takers even attempting to complete what is asked of them? At this point in our conversation, I remembered watching Louisa squirm at the end of her tests with Leila. Louisa was focused on her snack and no longer interested in answering questions or moving shapes into a pattern. I misread this as Louisa not being interested in cooperating, but the truth was her attention span was simply exhausted. And who among us is at their best when tired and hungry?
Esbensen is also looking at changes in scoring of particular subtests. For example, in the Stanford-Binet, a working memory assessment asks test-takers to repeat sentences that have been recited to them by the test administrator. If test-takers get two or more words wrong, they receive zero points. So a person could remember no words or four words of a six-word sentence and still receive the same score. Esbensen proposes counting the number of words that are correct, which would allow for a wider range of scores and abilities to be assessed.
To further complicate what IQ tests can tell us, studies have shown that the cognitive processes underlying the performance of a task on an IQ test for one person may differ from those used by another person to perform the same task. In other words, subtests do not always accurately and consistently assess the same skills for all people. When test structures are created for the general population, they may be misleading when applied to individuals who fall outside of that category on an IQ test. Historically, IQ tests like the Stanford-Binet struggled to capture and acknowledge the full range of cognitive abilities. But psychologists have recently worked with the authors of the fifth edition of the Stanford-Binet test to develop extended scoring below 40. There is hope that test developers are interested in making their score more accurate in the future.
I started to wonder whether IQ tests could ever be fully separated from their purpose and bias at the hands of psychologists in the early twentieth century. Would it ever be possible to employ IQ tests in ways that improve the lives of those who need the most support? I am hopeful that Esbensen’s research might help us overcome the bias that seems to be at the core of the content and scoring of IQ tests. Maybe this is our best chance, as I’m not naive enough to think that IQ tests are going away.
When psychologist Robert Schalock attended college in the sixties, he volunteered at an institution called Lakeland Village near Spokane, Washington, and interacted as a volunteer with the people who lived on the ward for those who were then labeled “profoundly retarded.” He spent significant time with a man in his early twenties named David, whose IQ score was considered low, but who was also remarkably creative in terms of practical and social skills.
Schalock spent time with David for several years. “Hey, David, can you make me a giraffe?” Schalock often asked him. Happy to oblige, David looked around for a piece of paper. He would glance at Schalock, mumble a bit, and then produce a highly detailed and accurate picture of a giraffe. Doctors, nurses, and visitors asked David to draw other animals. They were always perfect depictions. Schalock began to wonder, How could this person who has a diagnosis of “profound mental retardation” do something so sophisticated? Schalock began to realize that something was wrong with what psychologists thought an IQ score reflected about a person’s potential.
When Schalock was in graduate school a few years later, he spent time at the Rainier School, an institution like Lakeland Village or Goddard’s Vineland Training School. He observed people with phenylketonuria (PKU), a rare genetic condition that causes significant cognitive deficits if left untreated. “It’s one of those indelible memories,” Schalock told me. “I walked into the ward and it turned out to be a cage. It was a wire cage where people were placed. Instead of a shower, they got a hose. This was in 1965. This was the situation that forced me to rethink how people with intellectual and developmental disabilities should be treated.” Eventually, he spent his career as a psychologist questioning the definition and values our world places on intelligence and its measurement.
When we spoke, Schalock’s discomfort with the understanding and treatment of people with intellectual disabilities in the history of psychology was clear to me. But he is no outsider. Schalock, along with a team of professionals and self-advocates, was involved in developing the eleventh and twelfth editions of the AAIDD’s definition and classification manuals, which brought about meaningful change in the practices and policies regarding people with intellectual disabilities. With his colleagues Marc Tassé and Ruth Luckasson, Schalock argued that the initial edition of the DSM-5 inaccurately described the relationship between intelligence and adaptive behavior. When Binet, Goddard, Terman, and others developed a way for intelligence to be formally addressed, the IQ score became the linchpin of diagnosis. Even though the first version of the DSM-5 listed other factors—adaptive behavior and age of onset—as criteria for the diagnosis of intellectual disability, an IQ score was still considered the most important factor. But now, as reflected in the revised version of the DSM-5, adaptive behavior—the conceptual, social, and practical skills that a person learns and uses in everyday life—is considered an equally important consideration. According to Schalock, there has been an overreliance on IQ scores in the diagnostic process and an error in assuming a causative relationship between IQ score and adaptive behavior. Not only would this causative relationship be impossible to prove, Schalock claims, it is not supported by evidence. There is a strong correlation between intelligence and adaptive behavior, as Edgar Doll established in 1936, but there is no evidence that the relationship is causal. By making this distinction, Schalock asserts that an IQ score and the assessment of adaptive behavior should have equal weight in diagnosis. And, perhaps more significantly, it establishes that classification based on an IQ score does not determine a person’s ability to have a full and rich life. As Schalock witnessed early in his career, that ability is often dependent on environment, including the prejudice and biases that shape it.
But changing diagnostic practices isn’t enough. More tenets of our society need to be involved to enhance the equity, autonomy, and inclusion of people with intellectual disabilities. Schalock and his colleagues have called for a new paradigm of shared citizenship to guide the policies and practices related to people with intellectual disabilities. The purpose of support and intervention needs to change, they argue, from a focus on segregation and medical diagnostics to a perspective that primarily considers what supports a person needs in order to best contribute to a community. The shared citizenship paradigm envisions the engagement and full participation of people with intellectual disabilities as equal, respected, and contributing members of every aspect of society. Citizenship, in the way that Schalock imagines it, refers to a state of belonging in one’s community, country, or society. But it also suggests an active role in that community, one in which a person is involved in making decisions and contributing to its well-being. This would require a concerted effort, not just by psychologists, but by educators, physicians, policymakers, and service and support providers to rethink the role of people with intellectual disabilities in their communities.
The approach to intelligence and IQ tests is changing. But as this book has attempted to show, there are many ways in which its logic has been embedded in the structure of our everyday world. It guides how we understand the value of education, parenting, and employment. Changing these structures would involve more than just depending on new ways of thinking about the purpose and diagnosis of intellectual assessment. After all, psychologists are only involved in a person’s life up to a point.
In her book The Invisible Kingdom, Meghan O’Rourke draws attention to how American medicine is set up to be hyperspecialized. This leads to a system in which professionals don’t speak to each other, and this kind of structure is one of the barriers that stand in the way of patients getting the care that they need. I see a similarly flawed structure in the care of people with intellectual disabilities. Psychologists rarely talk to a child’s teachers directly; parents are expected to fill the intermediary role. And even within the same school, it can be difficult for teachers and school psychologists to find the time to collaboratively discuss the needs of a particular student. The annual IEP meeting is the only time in which this happens with any systematic coordination. Once a year, we meet in a conference room to discuss a document that Louisa’s teachers, intervention specialists, school psychologist, and Andy and I have contributed to in our separate ways. The meeting usually lasts around ninety minutes. That’s it. Ninety minutes of collaborative discussion for a year’s worth of development and learning. For the rest of the year, I often wonder if teachers refer to the IEP document at all, or if they ever find the time among their countless other responsibilities to compare how Louisa is doing in their classes. I wonder if the psychologists we see pay attention to the forms that the teachers fill out for behavioral assessment, or if the teachers see the cognitive assessment that the psychologists drafted. The siloing of psychologists and educators into isolated resources hinders a more holistic, community-based approach to support.
In order for a broader paradigm shift to occur, we would have to value the people who work in disability care professions and pay them more so that there is consistency and experience in these positions. We would need to train educators—from kindergarten teachers to college professors—to teach all types of learners. Employers would need to value community investment and inclusive workplaces over efficiency, speed, and the size of their profit. Doctors would need to listen to patients with disabilities, involve them in medical decisions, and see that life with a disability does not make it less valuable. It would involve taking this new logic beyond the field of psychology and considering how it might inspire a shift in the way we think about our priorities. It would require us to move away from high-stakes testing and reevaluate what we think those tests are telling us. In other words, it would involve rethinking the relationship between intelligence and care.
Like Rubin and Esbensen, Schalock advocates for minimizing the weight of IQ tests in diagnosis and plans for community living and shared citizenship. Regarding an IQ score, Schalock told me, “It doesn’t have a lot to do with preparing a meal.” In other words, if a team of caregivers is trying to help someone accomplish a particular task in daily life like cooking, assessing that person’s environmental circumstances—access to a grocery store, clearly written instructions in recipes, the right tools and equipment—will be much more helpful than knowing that person’s IQ. Focusing on adaptive behavior implies that a person is inherently capable, and the right circumstances for accomplishing a goal need to be found. Focusing on a person’s IQ implies a different approach—judging whether a person is capable at all. But life skills can be mastered to a degree that far surpasses what might be predicted by an IQ score. Schalock explained that when a diagnosis was based on intelligence tests alone, “It was a death diagnosis in terms of potential. Intelligence doesn’t fluctuate but adaptive behavior does.” I can’t help but think that this is essentially what happened to David, the young man that Schalock visited at Lakeland Village. In the 1960s, a low IQ score sentenced him to life in an institution. But Schalock glimpsed his potential, what might have been possible for David if his social and practical skills were valued. By minimizing the role of IQ tests in the diagnosis of intellectual disability, Schalock and other psychologists are addressing what can change, rather than focusing on the fixed meaning of an IQ score.
The shared citizenship paradigm involves an implicit admission that we have constructed a society and culture that make it extremely difficult for some people to successfully navigate the world. Seeing the problem this way requires a paradigm shift—to believe that there is nothing wrong or burdensome about a person, and to place the responsibility on a person’s environment to change.
Although I am hopeful about the ways in which the psychologists I talked to make use of the IQ test, I can’t help but wonder about the strange paradox of it all. The IQ test shaped the biases faced by those with intellectual disabilities in the contexts of education, employment, and so many other aspects of their lives. It seems strange to me now that IQ tests could have a role to play in efforts to confront and remove those biases. It would require finding a way to save what meaningful information can be gleaned from IQ tests and rejecting the deterministic approaches of the past.
When we spoke, Schalock was warm and generous. I felt like I was talking with a mentor I had known for years. I tried to tell him about Louisa, how amazing she was, but I didn’t know where to start. And soon there was a lump in my throat and I couldn’t get the words out. So, instead, I asked Schalock why IQ tests couldn’t be jettisoned from the practice of diagnosis and care entirely. “It would be chaos,” he responded. There are simply too many laws, rules, and regulations in our society now that are diagnostic based and depend on the IQ test. “So we can live with IQ, but it is not the only factor.” Practically, we may not be able to get rid of IQ tests, but we can minimize the impact of the score. “Whatever intelligence is, it is a reality,” Schalock told me. After years of research and parenting, I now agree. IQ is a reality, in the sense that it is a social structure shaped by beliefs and biases that we take for granted. But beliefs and structures can change. And as the pandemic taught us, it is possible to adapt to a new normal. In the meantime, those with intellectual disabilities and the ones who love them must demand a better future while living with a reality that is shaped by the past.
This might be one way in which I reckon with the history of IQ tests and move forward. To reckon means to consider, but also to settle accounts. It means deciding what I can and cannot control, what I can change and what I’m going to have to accept as one individual mother. It is a calculation of how much this history is still with us in the present, and how we might move past it in the future.
Narratives
Louisa is now eleven, and we are reading a children’s book about Ruth Bader Ginsburg that compels her to ask me about the Supreme Court. I say that the Supreme Court tries to make sure that we have good laws. They decide when rules are bad and aren’t working very well. They make sure that the laws don’t exclude people. I tell her that there used to be laws that were unfair to people with Down syndrome. I do not mention that there are still laws that are unfair to people with Down syndrome, like laws that allow people with Down syndrome to be paid less than minimum wage for work, or policies that make it difficult for people with Down syndrome to receive organ transplants, or rules about what social support she can receive if she ever wants to get married.
