Clearing Up Some Misconceptions about Neurodiversity
Long read, but worth it.
Just because you value neurological differences doesn’t mean you’re denying the reality of disabilities.
To my dismay, Simon Baron-Cohen’s recent article “The Concept of Neurodiversity is Dividing the Autism Community” perpetuates a common misunderstanding of the neurodiversity movement: that it views autism as a difference but not a disability. Baron-Cohen presents the issue as one of opposing sides: the medical model, which sees autism as a set of symptoms and deficits to be cured or treated, and the neurodiversity model, which he believes ignores any disabling aspects of autism. Unfortunately, this confuses the neurodiversity movement with the social model of disability, and it is an incomplete understanding of the social model at that.
Before I go into details, let me summarize what the neurodiversity movement does believe:
In the 2004 article “The Right Not to Work: Power and Disability,” Sunny Taylor explains: “The state of being mentally or physically challenged is what [disability theorists] term being impaired; with impairment comes personal challenges and drawbacks in terms of mental processes and physical mobility…. Disability, in contrast, is the political and social repression of impaired people. This is accomplished by making them economically and socially isolated. Disabled people have limited housing options, are socially and culturally ostracized, and have very few career opportunities.”
Few (if any) neurodiversity advocates deny that impairments exist in autism. Or that some impairments are more challenging than others, with or without accommodations. We, like Baron-Cohen, hope to solve the health struggles that often come with autism, such as epilepsy and digestive issues. But while these are more common among autistic people than nonautistic (or “neurotypical”) people, they aren’t actually symptoms of autism.
And culture affects these things, too. Depending on time and place in history, epilepsy could make a person a respected shaman or suspected of demonic possession. Gluten allergies are much easier to accommodate now than they were 20 years ago before food companies started offering gluten-free options. If wheat and rye went extinct, gluten allergy would never be a disability again!
When we talk about “not pathologizing autism,” we don’t mean “pretending autistic people don’t have impairments.” But we also don’t assume that neurological and behavioral differences are always problems. For example, there’s nothing inherently wrong with disliking social activities. Not wanting to socialize is different from wanting to participate and being unable to. Both are possibilities for autistic people. One requires acceptance, the other requires assistance. Sadly, I have yet to meet a therapist who doesn’t treat the two as equivalent and in equal need of correction.
While there is a lot of overlap with the social model, the neurodiversity approach is primarily a call to include and respect people whose brains work in atypical ways, regardless of their level of disability (I will focus here on autism, but neurodiversity is about “all kinds of minds”). This requires challenging our assumptions about what’s normal, what’s necessary and what’s desirable for a person to live well. Of course, better accommodations and reduced stigma would improve our lives immensely. But so would a broader definition of a meaningful life. As Taylor puts it: “Western culture has a very limited idea of what being useful to society is. People can be useful in ways other than monetarily.”
The neurodiversity movement believes in giving autistic people the tools to succeed in the workplace, but not shaming or pitying those who will never be financially (or physically) independent. We believe that a person who needs lifelong care can also be happy and reach personal goals. Taylor adds, “Independence is perhaps prized beyond all else in this country, and for disabled people this means that our lives are automatically seen as tragically dependent.”
But is independence really about being able to brush your own teeth, or is it more about being able to choose your own friends? Disability theorists and neurodiversity advocates think the second is far more important. Most therapies, however, teach only concrete practical skills, not personal empowerment.
When we say “Autism is just another way of being human,” we mean that profound impairments don’t change a person’s right to dignity, to privacy and to as much self-determination as possible, whether that means choosing their career or choosing their clothes. I cringe to see how often autistic people get videoed at their worst, without their consent, and broadcast on the internet for the world to see. You would probably be furious if someone did that with your moments of deepest personal struggle! The fact that these kids (and adults) can’t speak up doesn’t mean they're okay with it. Inability to answer is not consent. Additionally, autistic children are regularly subjected to therapies that teach them to hide their discomforts, stifle their personalities and be more obedient (or “compliant”) than their neurotypical peers, putting them at increased risk of bullying and sexual abuse.
Respecting neurodiversity means respecting nonverbal choices, even when those choices are “weird” or “not age-appropriate.” It means respecting the word “no,” whether it’s spoken, signed, or shown by behavior. It’s giving the same attention to a person using an AAC (augmentative and alternative communication) device that we give when a person speaks verbally. It’s understanding that muting an AAC device is the moral equivalent of taping over the mouth of a child who communicates by speaking. It means not using high-pitched baby talk with a 10-year-old, even if that 10-year-old still wears diapers and puts sand in his mouth. It’s never letting a child overhear herself described as “such hard work” or “a pity” or “a puzzle” or “so far behind,” no matter how little she appears to understand. Inability to respond doesn't mean inability to comprehend, as we've heard many times from self-advocates like Carly Fleischmann and Ido Kedar.
Baron-Cohen mentions “social difficulties” as a disability in autism, and for many autistic people, their social struggles are indeed disabling. But that’s an incomplete picture. Some autistic people genuinely prefer their own company. Many autistic people socialize better with other autistic people than with typical peers, so perhaps we shouldn’t judge their social skills solely on their interactions with neurotypicals. And, perhaps most importantly, one of the biggest social difficulties faced by autistic people is neurotypical people’s reluctance to interact with those they perceive as “different.”
That’s a social problem caused for autistic people by nonautistic people, not a social disability in autism. Asking only autistic people to change how they socialize is like asking minorities to speak and dress more like white people in order to be accepted. That’s a really bad way to combat prejudice, racial or neurological.
More people now use the language of neurodiversity, talking about accepting and supporting autistic differences. Unfortunately, however they phrase it, most autism therapies still uphold “more typical behavior” as the gold standard of success. Even though numerous autistic adults warn that the strain of faking normality often leads to depression, burnout and even regression later, years after the therapy was declared a success. Respecting neurodiversity means not insisting on eye contact, when autistic people have stated (over and over and over) that eye contact is so hard, so overwhelming and so stressful that it destroys their ability to pay attention.
Clearing Up Some Misconceptions about Neurodiversity
By Aiyana Bailin on June 6, 2019 Aiyana Bailin is an autism care professional and disability rights advocate.
Long read, but worth it.
Just because you value neurological differences doesn’t mean you’re denying the reality of disabilities.
To my dismay, Simon Baron-Cohen’s recent article “The Concept of Neurodiversity is Dividing the Autism Community” perpetuates a common misunderstanding of the neurodiversity movement: that it views autism as a difference but not a disability. Baron-Cohen presents the issue as one of opposing sides: the medical model, which sees autism as a set of symptoms and deficits to be cured or treated, and the neurodiversity model, which he believes ignores any disabling aspects of autism. Unfortunately, this confuses the neurodiversity movement with the social model of disability, and it is an incomplete understanding of the social model at that.
Before I go into details, let me summarize what the neurodiversity movement does believe:
- Autism and other neurological variations (learning disabilities, ADHD, etc.) may be disabilities, but they are not flaws. People with neurological differences are not broken or incomplete versions of normal people.
- Disability, no matter how profound, does not diminish personhood. People with atypical brains are fully human, with inalienable human rights, just like everyone else.
- People with disabilities can live rich, meaningful lives.
- Neurological variations are a vital part of humanity, as much as variations in size, shape, skin color and personality. None of us has the right (or the wisdom) to try and improve upon our species by deciding which characteristics to keep and which to discard. Every person is valuable.
- Disability is a complicated thing. Often, it’s defined more by society’s expectations than by individual conditions. Not always, but often.
In the 2004 article “The Right Not to Work: Power and Disability,” Sunny Taylor explains: “The state of being mentally or physically challenged is what [disability theorists] term being impaired; with impairment comes personal challenges and drawbacks in terms of mental processes and physical mobility…. Disability, in contrast, is the political and social repression of impaired people. This is accomplished by making them economically and socially isolated. Disabled people have limited housing options, are socially and culturally ostracized, and have very few career opportunities.”
Few (if any) neurodiversity advocates deny that impairments exist in autism. Or that some impairments are more challenging than others, with or without accommodations. We, like Baron-Cohen, hope to solve the health struggles that often come with autism, such as epilepsy and digestive issues. But while these are more common among autistic people than nonautistic (or “neurotypical”) people, they aren’t actually symptoms of autism.
And culture affects these things, too. Depending on time and place in history, epilepsy could make a person a respected shaman or suspected of demonic possession. Gluten allergies are much easier to accommodate now than they were 20 years ago before food companies started offering gluten-free options. If wheat and rye went extinct, gluten allergy would never be a disability again!
When we talk about “not pathologizing autism,” we don’t mean “pretending autistic people don’t have impairments.” But we also don’t assume that neurological and behavioral differences are always problems. For example, there’s nothing inherently wrong with disliking social activities. Not wanting to socialize is different from wanting to participate and being unable to. Both are possibilities for autistic people. One requires acceptance, the other requires assistance. Sadly, I have yet to meet a therapist who doesn’t treat the two as equivalent and in equal need of correction.
While there is a lot of overlap with the social model, the neurodiversity approach is primarily a call to include and respect people whose brains work in atypical ways, regardless of their level of disability (I will focus here on autism, but neurodiversity is about “all kinds of minds”). This requires challenging our assumptions about what’s normal, what’s necessary and what’s desirable for a person to live well. Of course, better accommodations and reduced stigma would improve our lives immensely. But so would a broader definition of a meaningful life. As Taylor puts it: “Western culture has a very limited idea of what being useful to society is. People can be useful in ways other than monetarily.”
The neurodiversity movement believes in giving autistic people the tools to succeed in the workplace, but not shaming or pitying those who will never be financially (or physically) independent. We believe that a person who needs lifelong care can also be happy and reach personal goals. Taylor adds, “Independence is perhaps prized beyond all else in this country, and for disabled people this means that our lives are automatically seen as tragically dependent.”
But is independence really about being able to brush your own teeth, or is it more about being able to choose your own friends? Disability theorists and neurodiversity advocates think the second is far more important. Most therapies, however, teach only concrete practical skills, not personal empowerment.
When we say “Autism is just another way of being human,” we mean that profound impairments don’t change a person’s right to dignity, to privacy and to as much self-determination as possible, whether that means choosing their career or choosing their clothes. I cringe to see how often autistic people get videoed at their worst, without their consent, and broadcast on the internet for the world to see. You would probably be furious if someone did that with your moments of deepest personal struggle! The fact that these kids (and adults) can’t speak up doesn’t mean they're okay with it. Inability to answer is not consent. Additionally, autistic children are regularly subjected to therapies that teach them to hide their discomforts, stifle their personalities and be more obedient (or “compliant”) than their neurotypical peers, putting them at increased risk of bullying and sexual abuse.
Respecting neurodiversity means respecting nonverbal choices, even when those choices are “weird” or “not age-appropriate.” It means respecting the word “no,” whether it’s spoken, signed, or shown by behavior. It’s giving the same attention to a person using an AAC (augmentative and alternative communication) device that we give when a person speaks verbally. It’s understanding that muting an AAC device is the moral equivalent of taping over the mouth of a child who communicates by speaking. It means not using high-pitched baby talk with a 10-year-old, even if that 10-year-old still wears diapers and puts sand in his mouth. It’s never letting a child overhear herself described as “such hard work” or “a pity” or “a puzzle” or “so far behind,” no matter how little she appears to understand. Inability to respond doesn't mean inability to comprehend, as we've heard many times from self-advocates like Carly Fleischmann and Ido Kedar.
Baron-Cohen mentions “social difficulties” as a disability in autism, and for many autistic people, their social struggles are indeed disabling. But that’s an incomplete picture. Some autistic people genuinely prefer their own company. Many autistic people socialize better with other autistic people than with typical peers, so perhaps we shouldn’t judge their social skills solely on their interactions with neurotypicals. And, perhaps most importantly, one of the biggest social difficulties faced by autistic people is neurotypical people’s reluctance to interact with those they perceive as “different.”
That’s a social problem caused for autistic people by nonautistic people, not a social disability in autism. Asking only autistic people to change how they socialize is like asking minorities to speak and dress more like white people in order to be accepted. That’s a really bad way to combat prejudice, racial or neurological.
More people now use the language of neurodiversity, talking about accepting and supporting autistic differences. Unfortunately, however they phrase it, most autism therapies still uphold “more typical behavior” as the gold standard of success. Even though numerous autistic adults warn that the strain of faking normality often leads to depression, burnout and even regression later, years after the therapy was declared a success. Respecting neurodiversity means not insisting on eye contact, when autistic people have stated (over and over and over) that eye contact is so hard, so overwhelming and so stressful that it destroys their ability to pay attention.
Clearing Up Some Misconceptions about Neurodiversity
By Aiyana Bailin on June 6, 2019 Aiyana Bailin is an autism care professional and disability rights advocate.
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