Special Needs Kids are People Too! Seeing the Possibilities through a Neurodiverse Lens

EXCERPT FROM:

SPECIAL NEEDS KIDS ARE PEOPLE TOO: Seeing the Possibilities Through a Neurodiverse Lens

by Amy Bodkin, EdS

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CHAPTER 2: WHY SPECIAL NEEDS?

“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.”
– Fred Rogers

Since I started using the term “special needs” for my work, I have taken a lot of flak for it from fellow Autistics, professionals, and parents. People often ask questions like, “Why don’t you use neurodivergent?” or “Why don’t you use exceptional?” And I have honestly given this a lot of thought because if I am going to run counter to what everyone is telling me, then I need to have a good reason and know why I disagree with everyone else!

So, why not use neurodivergent? I use it all the time to describe myself, so why not use it in my work? The reason is that I work with families who do not always fit neatly into the description of neurodivergence. 

The definition for neurodivergence, according to The Oxford Dictionary, is “divergence in mental or neurological function from what is considered typical or normal.” 

But this definition doesn’t always fit children with a physical disability or a severe medical condition, a parent with an autoimmune disease, adopted children, foster children, or one of the many other situations requiring special care. Of course, some of these situations may lead to a difference in neurology, but that doesn’t mean those individuals are ready to self-identify as neurodivergent. Sometimes they have to mourn the loss of their own previously held expectations of who they were and how the future might look. Sometimes they just have to recognize and acknowledge their legitimate feelings before they are ready to take on a new moniker and, indeed, a new identity!

Then why not use exceptional? It sounds so positive! We get the opportunity to highlight how everyone has things that make them excellent! 

The definition of exceptional according to The Oxford Dictionary is “unusually good or very unusual.” But in educational settings, the term exceptional has been, more times than not, used to describe children who are identified as gifted. This brings up a completely different set of word problems.

In the United States, giftedness is an educational identification based on a student’s Intelligence Quotient (IQ). Most people’s experience with IQ scores is that they measure one’s intelligence, which would make sense. Except, that is not correct. 

In the late 19th century and early 20th century, psychologists explored the concept of intelligence and endeavored to develop a method for measuring people’s intelligence. Eventually, they were able to develop a test that they thought could gauge intelligence, what we now know as a standard IQ test. The belief was so strong that the United States military used these tests on a mass scale during World War I to determine which enlistees should be selected as officers. Of course, that led to a large amount of data that could then be used for further research on intelligence. This also led to the unfortunate and inaccurate conclusion by researchers that certain ethnic groups were more intelligent than others.¹ This, of course, was not true but was a bias in the test. 

This further led to the United States Supreme Court upholding the right of the government to force sterilization on citizens with low IQ scores (Buck v. Bell, 1927).² This, then, resulted in a more significant percentage of people of color being forcibly sterilized than their white counterparts. While eugenics has somewhat fallen out of favor, the Supreme Court’s decision has never been overturned.

We have learned from intelligence testing over the last century that despite our most audacious dreams, IQ tests do not actually measure intelligence. Like the people of old endeavoring to build a tower to the heavens, we also thought ourselves equal to the Divine. And, like them, we, too, have been humbled. This doesn’t mean that intelligence tests are entirely useless. They can offer valuable insights into how a person processes information at a particular moment; however, they cannot, and never have been able to, predict future ability.

As you can see, intelligence tests have been used to separate people into those who are “valuable” and those who are not. They have also been used to divide students between those deserving of an enriching curriculum and those pulled from all elective subjects for remedial assistance in reading and math. And the reality is that there is no basis for such  decisions.

I once had a teacher in high school who told my class that one year she had been given her class roster, and each student had a number next to their name. As she looked at the numbers, she concluded that they must be her students’ IQ scores and that she had better do an outstanding job teaching this year to live up to her students’ potential. She later found out that those numbers were their locker numbers, but it taught her a valuable lesson about the power of our perceptions.

It’s important to note that gifted students also face unique challenges due to their atypical development. But we have a tendency to minimize the challenges of gifted students and only focus on their strengths. Likewise we also have a tendency to minimize the gifts of students with learning disabilities and tend to focus solely on their challenges. It is ignorant to label giftedness positively and learning disabilities negatively. Both identifications represent imbalances in development, and each comes with its own set of strengths to celebrate and weaknesses to support. 

A similar effort to categorize has been happening to Autistics as well as within the Autistic community. Until recently, children considered “higher functioning” were diagnosed with Asperger’s Syndrome, while children considered “lower functioning” were diagnosed as Autistic. Even though the Asperger’s diagnosis no longer exists, many people still choose to identify themselves as having Asperger’s. Why is that? Some people prefer to stick with Asperger’s because it was the diagnosis they were given. But, sometimes, people stick with Asperger’s to separate themselves from “lower functioning” Autistics. And there can be reasons to do this as it can affect how others, especially those in authority, may judge you.

However, some opt to identify as Autistic to unite their voices and advocate for the greater good of the Autistic community. Others choose to identify as Autistic due to the complicated legacy of Hans Asperger, the man for whom Asperger’s is named. 

The first time anyone discussed Autism was in the late 1930s when Hans Asperger spoke to Nazi officials about the unique abilities of some of his Autistic patients, though they were not yet called Autistic. Was he acting as a willing agent of the Nazis by doing their dirty work deciding which children had value to the state and which did not and should be sent to the first death camps? Or was he working as an undercover operative doing what he could to preserve lives? The world may never know for sure, as the motivations of a man’s heart go with him to the grave. What we do know is that the complicated history of Autism, including Hans Asperger himself, continues to have an impact on the words we choose today. You can learn more about this fascinating history in the book Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman.

The words we use matter. So why not use the term exceptional? As you can see from the examples of intelligence testing and Asperger’s, exceptionalities have been used to separate people into those who have real value and those who don’t. That does not inspire a sense of equality or brotherhood. However, recognizing that we all have struggles, weaknesses, and needs unites us as we realize what we have in common as human beings. We all struggle in some way, at some point, because that is how growth happens, and that is what it means to be a living being, to constantly be in a state of growth and change. In fact, only when we stop growing and changing do we go from living to dying.

The challenges we all experience vary significantly from person to person, and it almost always diverges from the nonexistent “golden average”. So why not change the term from “special needs” to “human needs?” 

The Oxford Dictionary defines special as “not ordinary or usual; different from what is normal.” 

In truth, many of these needs are special in that they are outside the norm and not naturally accommodated for, while other needs are more common and thus naturally accommodated for. 

In an ideal world, all needs would be taken into account as “human needs” without this emphasis on a diagnosis proving their necessity. In fact, many accommodations work equally well, if not better, for people without a diagnosis. However, in our less-than-perfect world, I suspect that, in some ways, a drive toward “human needs” would eventually denigrate the real struggles of very real, though not typical, needs that are not being accommodated.

Trying to emphasize that these are all just “human needs” could also allow us to identify our needs in a way that says, “I’m not different. I’m just like everybody else.” And why would it be a problem to see no difference? We are, after all, members of the same human race. But it is a problem. We have learned over recent decades that being color-blind to racial differences does not lead to true inclusivity. In fact, it does quite the opposite and bars us from celebrating what is truly beautiful and valuable about our differences, shaped by our unique journeys. 

There is an episode of Star Trek: The Next Generation (yes, I’m a Trekkie!) in which the Genome colony risks annihilation because their carefully engineered society cannot easily be separated from their planet. It turns out that the solution was found in a piece of technology worn by Geordi, the Chief Engineer of the Starship Enterprise, a blind man. The VISOR (Visual Instrument and Sensory Organ Replacement) he wore provided him with a sense of sight. But he never would have been born in the Genome colony because his existence was not valued. And yet, it was his very existence and the technology created to support his need that protected the Genome colony from extinction.

We have talked about the importance of challenges in human growth and development, and this importance is more than just skin deep. Our very bones must experience just the right amount of stress to grow correctly, and we must all experience stress in some form or another to continue our existence. Stress is a necessary aspect of life that knows no difference in class, religion, race, or diagnosis. And, when we are willing to identify with each other, to say, “Yes, I am different like you are also different,” we realize that we all have special needs. We come to realize that we all have needs that must be acknowledged and accommodated at some point in our lives. Perhaps we are not as different from others as we may have originally thought. Seeing ourselves in others, despite apparent differences, humanizes us by acknowledging our diverse needs.

Humans, by nature, are driven to rank and categorize our world to make sense of the confusion we see around us. We tend to lift some people on a pedestal so high that we cannot reach them, while we trample others beneath our feet, relegating them to the muck and mire of human refuse. Neither of these extremes leads to relationships that bring true belonging and acceptance, and changing the words we use will only change the outward dressings. 

To see genuine acceptance and true belonging, we must invest instead in eye-to-eye relationships. These are the only kind of relationships that can allow people to meet on equal, if albeit different, footing.

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