originally posted June 6, 2019 at:
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.
The social model of disability comes from the field of disability studies. It says that a person is “disabled” when the (societal) environment doesn’t accommodate their needs. An example: in a world where ramps and elevators are everywhere, a wheelchair user isn’t “disabled,” because he/she/they can access all the same things as a person who walks: schools, jobs, restaurants, etc. However, providing equal opportunity doesn’t mean ignoring the differences and difficulties a wheelchair user may experience.
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.
Sign up for Scientific American’s free newsletters.
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.
The same goes for “quiet hands” or any time an autistic child is forced to act more typical at the expense of energy they need for intellectual development or personal growth. Studies are finally confirming what autistic people have said for decades: we get better outcomes when it’s the caregivers rather than the children who are taught to behave differently. It's tragic how often the autistic viewpoint is ignored by researchers and therapy companies.
Thinking in terms of neurodiversity means challenging the assumption that pretend play is necessary just because it’s what neurotypical children do. While typical children learn with a hands-on, stepwise approach, many autistic children learn best by observing for a long time before trying a new skill. Just as visual learners or auditory learners should be allowed to use the learning method that works best for them, so too should autistic children. We should respect that they usually learn things in a different order than typical kids do, and stop tracking their progress on neurotypical developmental timelines.
A child with autism is fascinated by colored marbles. Credit: Aiyana Bailin
I’m a respite carer. I’ve had clients on the spectrum (and with other developmental disabilities) from ages four to the early 20s. Many are nonverbal or minimally verbal. I believe all are intelligent in their own ways, even if they have intellectual disabilities. I have clients who melt down or blow up. I sympathize with their frustrations. I have clients who bite themselves or me. I’m certain that they never do so without reason. I have clients who communicate with single words, apps, drawings or simply pulling me to what they want. I don't want to change their communication style; I want to learn it like a second language. I have clients who will “pass” as nonautistic, and clients who will probably never live on their own. I make no assumptions about who will have a more fulfilling or enjoyable life.
There are struggles that come with being far from “normal” and struggles that come with being almost “normal”—not to mention, typical lives are hardly free of challenges! Struggle is part of everyone's life, not just disabled people's. Many of us assume we know what a good life looks like, but we're very limited by our own experiences. A good life means different things to different people. Just ask a Syrian refugee and a New York socialite what they need to be happy.
My clients are complicated, just like all human beings. I have clients who do gross and socially inappropriate things in public. If I am embarrassed by their actions, that's my problem, not theirs. I have clients who gently stroke my hair with shaky hands, who silently share their favorite foods with me, who flap and jump and screech with excitement when I arrive at their door. I wouldn’t trade their flapping hands and shining eyes for anything in the world. Their very existence is beautiful.
My clients usually have impairments. My clients are often disabled. My clients are all cool and interesting people. Some of my clients notice things others miss. Some communicate eloquently without language. Some make jokes using only one or two words. Some have skills in memory, engineering and music that make me envious. You might be very surprised by which descriptions belong to which clients.
Respecting neurodiversity means challenging assumptions about what intelligence is and how to measure it. It means reminding ourselves that just because a person can’t speak doesn’t mean they aren’t listening. It means not asking someone to prove their intelligence before talking to them in an age-appropriate way or offering them intellectually stimulating opportunities. It means remembering that there can be a huge disconnect between mind and body, and that a person’s actions may not reflect their intentions, especially when they are overwhelmed or upset.
Respecting neurodiversity means the professional community needs to apologize for decades of mistakenly insisting that autistic people lack emotions or empathy, and for all the harm, both physical and psychological, that has been done to autistic people (and is still being done) because of those errors made by neurotypical observers. It means asking whether some “weaknesses” are really strengths in disguise. It means always asking “Is this activity/skill/behavioral goal actually necessary, or just normal?” and “What can we adults do differently so our kids don't have to?”
I suspect parents are thinking, “But I have to teach my child how to get along in this world! I might be willing to change for them, but other people won't.” Yes, you can work to teach your child the rules of your society, without letting those lessons take over their life. Children at school have to raise their hands and wait to speak, but we don't require this at home. Practicing an instrument is exhausting, so we don't ask young children to do it for hours at a time. Treat “acting normal” the same way.
It's work, and hard work at that. Don't ask for it all the time. Acknowledge that it's usually difficult and sometimes downright painful. Ask yourself what you'd allow done to a nondisabled child. Would you let a therapist physically restrain her for biting her nails? Hide his favorite food until he cooperates? If it's not okay for a neurotypical child, it's not okay for an autistic one.
Respecting neurodiversity means listening to autistic adults and taking them seriously when they tell us that the psychological cost of fitting in usually outweighs the benefits. It means accepting that some kids will learn to write but never talk, or will always understand music better than manners, or will never have an interest in sports, or don’t identify with a binary gender; and that there is room in this world to appreciate and celebrate all these individuals for who they are, regardless of how much help they need. Doing so makes their world, and ours, a better place.