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Neurodiversity

The Term Neurodiversity Is Good, But Not Good Enough

A Personal Perspective: Words influence how we see and treat one another.

Twenty-five years ago this month, the word neurodiversity appeared in print in a September 1998 article in The Atlantic. Judy Singer, an Australian social scientist, introduced the word in reference to autism. In 2000, Kassiane Asasumasu, an activist for the neurodiversity movement, coined the term neurodivergent to refer to any person whose development was nontypical. Movements are more than words; but these two words, and the women who coined them, helped inspire the neurodiversity movement, which views neurodevelopmental differences as strengths or unique talents rather than deficits.

There is a long history of demeaning words used to label people with developmental disabilities. And those words, too, have consequences. The old words helped convince some parents and society at large that these children’s lives were of such limited value they were better off in institutions, ultimately depriving many of the love and support all children deserve.

In light of that history, neurodiversity offers a welcome contrast. It’s easy to understand why so many people use the word to describe themselves. And so many people do. People with diagnoses of autism, OCD, ADHD, and many other conditions proudly use the term. Do others who identify as neurodivergent without a formal diagnosis?

The use of the word neurodiversity has exploded in recent years. The chart below tracks the number of articles in English-language newspapers around the world that include the word over the past 20 years.

Doreen Samelson and Lisa Ruble
Source: Doreen Samelson and Lisa Ruble

The advent of neurodiversity has had a positive impact on how people with developmental differences are perceived. That said, in our experience working as autism researchers and clinicians, it tends to exclude a very large and important group of people: those with intellectual disabilities (IDs). A 25-year-old word is quite young; its meaning is still coming into focus. Definitions of “neurodiversity” typically do include people with IDs, but the common use of neurodiversity as an identity doesn’t really seem to include them.

Instead, our public discussion of neurodiversity, including autism, often centers on people with high intelligence. Online lists of people assumed to be on the spectrum often include some of our most famously brilliant citizens – Nobel prize-winning scientists, best-selling musicians, and billionaire tech CEOs. Many don’t appear to meet the criteria for autism as a disability or disorder. And yet, it is common for exceptional people, who don’t seem to have a disability, to be held up as examples of neurodiversity as a gift. Linking their success to neurodiversity represents a kind of progress, but only for some people.

It can also be very confusing for parents of children diagnosed with autism and intellectual disability who sometimes wonder if their child with an IQ under 70 will be able to attend college. People with intellectual disabilities can – and often do – lead successful lives. But their success is not measured in billions of dollars, Nobel Prizes, or high IQs.

One of us is the parent of an adult with developmental disabilities. James is deaf and has minimal language abilities and ID. He also has a job, his own apartment with support, and a life of self-determination. Successful isn’t a word commonly used to describe people with significant intellectual disabilities. Yet, for James and many others like him, it clearly applies. James is remarkably successful. His life represents the kind of success people with ID can achieve with support and understanding of their disability. It’s just not the kind of success that has come to typically be associated with neurodiversity.

Words influence how we see one another and treat one another. The old, ugly words for developmental disabilities left no room for acknowledging the inherent value of the people they described. Neurodiversity is better, but does it overlook the reality of people living with an ID? Does it encourage us to celebrate successful people like James?

All parents – whether their children are neurotypical or neurodiverse – face the task of helping their children navigate the world and find their own success. Doing this well requires embracing children as they are. For parents of children with ID, this includes acknowledging both their individual strengths and the specific challenges inherent to their disability. These parents deserve a realistic vision of what their child’s future success looks like – including meaningful role models like James. They deserve to take pride in their child’s success. They deserve a network of support – family members, teachers, and society at large – who understand that neurodiverse people have a broad range of abilities – and that the definition of success should be tailored to the unique gifts and needs of each child.

For some, the term “neurodiversity” may be good. For others, it’s not good enough. Twenty-five years on, we still need better words.

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