“Autism, Neurodiversity, and Disability Rights: Then and Now”
In Plain English:
Disability advocates are in the middle of an ongoing struggle to ensure civil rights for autistic individuals, and hardly anyone has seemed to notice.
Ari Ne’eman, president of the Autistic Self-Advocacy Network
What it covered:
This event was less of a lecture and more of a roundtable discussion about Disability Rights and Neurodiversity (a term so obscure that the Harvard Gazette mistakenly listed the title of the talk as “Autism, Neodiversity, and Disability Rights”). There were barely a dozen of us in the room, which made for one of the most intense academic conversations I’ve ever witnessed.
Ari Ne’eman began by giving an overview of the history of discrimination against and institutionalization of autistic individuals. Our culture has a long tradition of imprisoning people who are physically and/or mentally disabled, but “medical” institutionalization didn’t begin in earnest until the late 1800s, when the eugenics movement took hold. Ne’eman cited Alexander Graham Bell as one of the leaders of the American eugenics movement.
Bell and his eugenicist compatriots wanted a way to contain “different & defective members of the human race.” So they built massive institutions to house anyone who was considered a threat to mainstream society. Ne’eman emphasized the point that these early institutions were not specifically designed for autistic individuals* but rather anyone who was socially undesirable or difficult to manage.
Over the course of the 20th century, the dialogue shifted. Autism & Asperger’s emerged as medical diagnoses, and the medical community often presented institutionalization as the best possible outcome for an autistic child. “They made it seem like it was pathological not to institutionalize us,” Ne’eman said.
In the second half of the 20th century, activists began to advocate for de-institutionalization and disability rights, but the change has been slow and gradual.
“Whenever you close an institution, there’s always a subset of parents who want it to remain open,” Ne’eman said. “I actually have sympathy for that perspective because they were told that it was what was best for their child, and it’s hard to go to them and say, ‘Remember the hardest decision that you ever had to make? The one that kept you up nights and separated you from your child? Well, oops. We were wrong. You didn’t have to do that.’”
The playing field still isn’t even for families who keep disabled family members at home. Many state and federal laws still discriminate against autistic individuals, by not requiring states to provide necessary services and entitlements for autistic individuals who live with their families. It’s not unusual for one parent to be forced to quit their job in order to take care of an autistic child.
However, these legal barriers are masking an even deeper problem with the way our society treats autism. Even though we’ve made progress in terms of treating autistic people more humanely (with the notable exceptions of places like the Judge Rotenberg Center), the underlying goals of autism management & education haven’t changed since the eugenics movement:
“Autism is still treated as a defect that needs to be eliminated,” Ne’eman said. “Either by preventing autistic people from being born or by saying, ‘The person is born. There’s nothing we can do about that. Let’s make them act as normally as possible, regardless of whether normalcy is a useful goal.’”
Examples of rhetorical bigotry against autism abound: We speak about autism as if it’s an inherently tragic affliction. The media tells us that autistic children are unfeeling, incapable of love, incapable of understanding or making themselves understood. Autism is something that people “suffer” from, and it is a “burden” to families. We are told that autistic adults are “man-children” or psychopaths. When an autistic individual is good at something, we call them an “idiot-savant” rather than a talented person.
Scientific research into autism disproportionately focuses on causes, and many scientists openly admit that they hope we will one day have a prenatal test that detects autism (which will, by extension, allow parents to abort autistic fetuses and try again for a “normal child”).
And, yet, many non-autistic people (who are referred to by neurodiversity advocates as “allistic” or “neurotypicals”) fail to see why autistic people might find all of this offensive.
Even people who are sincerely trying to help inadvertently contribute to the marginalization of autistic individuals. Many parents and caregivers focus on trying to force autistic children to speak rather than learning to listen to forms of communication that are more natural to autistic children, and many behaviors (like hand-flapping or stimming) that aren’t actually harmful are discouraged simply because they are associated with autism.
Ne’eman pointed out that Ivar Lovaas, who helped develop “behavioral analysis”, one of the most common techniques for modulating autistic behavior, also participated in the UCLA Feminine Boys Project, which sought to develop a “restorative therapy” for teens with homosexual tendencies. The rhetoric used to justify the two projects was uncannily similar.
The goal of most educational programs for autistic children is to make them functionally “indistinguishable” from allistic peers (or, at the very least, easier for their parents to deal with). However, normalcy-centric programs can stop autistic people from exploring their innate talents and interests.
This is where the idea of neurodiversity comes in. People with neurological conditions that we typically classify as deficits or disorders (autism, ADD/ADHD, even bipolar disorder) often notice things that neurotypical people do not. While these conditions undoubtedly make it harder for many people to function and often cause extreme distress, treating them as inherently negative traits that must be “corrected” devalues the unique insights and talents of people with these conditions. It also ignores the fact that neurological conditions are not simply “diseases” that can be “cured”.
Our neurological makeup determines how our brains process sensory inputs, which in turn, dictates what we notice in the world around us. The “neurotypical” human brain prioritizes inputs from other human faces to a degree that would be pathological in any other species; autistic brains do not. (I recognize that this is a radical oversimplification, but I’m trying to make a point.) They experience the world in a fundamentally different way, and arguing that their natural neurological processing is “wrong” simply because it doesn’t fit into our fast-talking, networked society is a form of bigotry.
The goal of the neurodiversity movement is to reframe the dialogue around neurological difference. Rather than treating neuroatypicals as victims of insurmountable pathologies, we should treat them as people who are capable of understanding themselves and their problems in ways that the beneficiaries of neurotypical privilege cannot.
Drawing the line between clinical pathology and neurodiverse conditions is a tricky business, but Ne’eman said that communities will have to define themselves. No one else, not the healthcare providers and not the parents, can determine whether a condition is fundamental to the patient.* He also acknowledged the fact that it’s somewhat problematic to label people as being “neurotypical”, because there really is no such thing as a typical mind or a typical brain. However, he emphasized that everyone can contribute to the self-advocacy and neurodiversity movements.
*Example of what Ne’eman means by “fundamental to the patient”: ADHD can be medicated but cannot be “eliminated”, because it is an inextricable part of the patient’s neurological wiring. ADHD is certainly a real, physical phenomenon that occurs in the brain that can cause severe problems, but it is very different from things like tumors and bacterial infections (which can usually be removed or eliminated without fundamentally changing the way the patient’s brain works).
My Personal Take:
I don’t usually ask questions when I crash these talks, but this time I felt like I had to. When Ne’eman first made his comment about how the communities with neurological conditions have to be the ones to define themselves, he didn’t elaborate on how these communities would come to a consensus or how they would express that consensus to the public.
And I was confused by that, because, based on my experiences, those two things sound impossibly difficult.
I have ADHD,(and I’m really frustrated by the fact that there isn’t an adjective like “autistic” that applies to us. ADHD is not something that I have. It’s something that I am. Having to say “person with ADHD” every time is just as clunky and stupid as calling right-handed people “people with PURH (Predilection for Using their Right Hand)”. But I digress. Can’t help it. Digression is how I think), and I spend a lot of time arguing with my ADHD cohorts about whether or not ADHD is inherently a bad thing.
My opinion on ADHD is strongly colored by the fact that I’m an educated white upper-middle-class woman with a scientific background and a penchant for reading, who wasn’t diagnosed until I was 20. By the time I was labeled as having a deficit, I had already internalized the idea that I was an intelligent person and learned how to explain the logic behind my ADHD behaviors to my teachers and neurotypical peers (e.g. “When I’m frustrated with a problem on my math homework, I like to get up and run around because it helps me disperse the tension and calm down”). And, of course, the fact that I’d succeeded in school for 13+ years made me extremely skeptical of people who imply that ADHD damns its “sufferers” to academic failure and unfulfilling lives.
I have also left the stove on and almost burned down my dorm too many times to deny that my ADHD is a serious problem, but when I hear other people with ADHD talk about it as if it’s a monster that wrecks their ability to have normal lives, that scares me. Many of my favorite things about myself are strongly mediated (if not directly caused) by the fact that I perceive the world through an ADHD filter. I would fight tooth-and-nail against anyone who tried to “undo” that filter and make me “normal”. But not everyone with ADHD feels that way.
Case in point: Right before I went to the talk, I did a quick search for “Neurodiversity” on Reddit and found a post on the ADHD subreddit by someone who had just founded a neurodiversity subreddit and was urging /r/ADHD users to check out /r/neurodiversity. And I was surprised by how negative response on /r/ADHD was.
ADHD users were concerned that neurodiversity might be used against the ADHD community by the “ADHD isn’t a real thing; it’s just pharmaceutical companies marketing unnecessary drugs to lazy people who like to make excuses” crowd. Others pointed out that their ADHD did, in fact, feel like a burden and a deficit. One user summed it up fairly well:“We should not be discriminated against. We also shouldn’t be told that we should be fine with our condition. I’m not. Many of us are not.”
While I think that all of the /r/ADHD users brought up a lot of valid points (Neurodiversity advocates have to be extremely careful when they ask people do de-medicalize the dialogue around autism, because so many people in the mental health community are fighting an uphill battle against people who dismiss mental illness as not being real medical conditions), I had a hard time not screaming at, “That’s exactly why you should be in the neurodiversity movement! Explaining why the ADHD perspective is significantly different from the perspective of people who don’t have ADHD is actually going to be critical for convincing people that ADHD exists!”
If the ADHD community, which is one of the largest and most socially-accepted groups of neuroatypicals, can’t agree that they should march under the neurodiversity banner, how will groups where individuals struggle with written and verbal communication engage in the dialogue that needs to happen for a consensus to form? And how would they articulate that consensus to mainstream society?
I couldn’t figure out why Ne’eman would gloss over that part of it, so I asked him about it.
And I must not have asked him very clearly because he asked me to give an example of a group that wouldn’t be able to communicate that well.
And that’s when I really put my foot in my mouth.
“Well,” I said, “I mean, people who can’t speak, like lower-functioning autistic people express whether or not they think their condition needs treatment? Or what if they feel like they can’t put their ideas into a medium that will be understood by other people? How would they build a consensus?”
I had been thinking of my younger brother, who is autism-spectrum, and who, despite being able to read, write, speak, and offer in-depth analyses of the historical and political motivations behind political events, insists that he cannot write the essays his high school English and history teachers assign to him. When we ask him what’s getting in the way of writing his essays, he just repeats, “I can’t”. Over and over again.
I can’t speak for my brother, but I get the impression that he thinks paring his ideas and observations down to a single thesis is impossible because all of those ideas and observations are equally important. He doesn’t seem to be able to come to a consensus with himself, and after watching him struggle to articulate his ideas for so long (all the while telling himself that he can’t), I have a hard time picturing him coming to a consensus agreement with someone who cannot speak or write. And I wanted to know how something like that could come about.
But I think Ne’eman only heard one word out of my question: lower-functioning.
“We don’t like to use the terms ‘higher’ and ‘lower-functioning’, because they date back to the institutionalization system”, said Ne’eman.
I was mortified. I couldn’t believe that as someone who gets unreasonably ticked off when people talk about “higher” and “lower” or “less-evolved” organisms, I had never questioned the idea of higher and lower functioning autism cases. Oh fuck, I thought. Now everyone thinks I’m one of those Western feminists who thinks she knows everything and goes on rampages of marginalization-disguised-as-help.
“And I am glad you asked that question because it is important to be clear about what we mean when we talk about ‘eliminating’ autism,” Ne’eman continued. “No one is going to object to empowering people to communicate more effectively, but we have psychiatrists telling parents to teach their children to have quiet hands and things like that in order to make them more likely to speak. In fact, discouraging hand-flapping makes them less likely to speak.”
There’s no way Ne’eman could have known this based on our interactions in that room, but I am, in fact, a hand-flapper. When I hear (or come up with) an idea that I’m really excited about, my natural impulse is get up, run around in circles, and flap my hands (up and down at the wrist), while giving this exciting new idea further thought. Different people flap their hands (also called stimming) in different ways (some people go side to side, or flap from the elbow. Or they do something other than a hand flap.) for different reasons (Some people flap when they’re scared or stressed out or angry. But many people, like me, flap to express happiness or enthusiasm).
The stigma against flapping and pacing has always really bothered me, because it’s like telling people not to smile. Not because it’s inherently destructive, but because it’s weird and it bothers other people. I honestly think that things would be a lot better for ADHD and autistic kids if people could just wrap their heads around the idea that things like running and pacing and flapping and rocking back-and-forth aren’t signs of inattention or disrespect. In fact, they’re signs of emotional engagement.
But, of course, there’s no way Ne’eman could have known that I’d been sitting there, actively suppressing my hand-flap impulse by taking notes during his talk.
“So,” Ne’eman concluded, “I think it’s important to let autism-spectrum individuals know that there are many ways for them to speak. Does that answer your question?”
Biggest Misconception to Avoid:
Neurodiversity isn’t about denying the fact that neurological disorders aren’t real problems or arguing the people shouldn’t be medicated. It’s about acknowledging these problems without demeaning the people who have them.
It’s also recognizing that having people in the population who think atypically is actually good for a society as a whole. I think most people would agree that we’re better off having a mix of introverts and extroverts in the population (and there are significant neurological differences between introverts and extroverts). ASD, ADHD/ADD, and other permanent neurological conditions cause much bigger problems than introversion and extroversion do, but I think we can recognize that neuroatypical people have unusual perspectives and talents that can benefit everyone while still acknowledging those problems.
Usually, I use this space for a joke, but please, please, please burn the following statement into your brain:
Ne’eman: “We have this idea that autism is something that happens to normal kids and can be made to un-happen. It isn’t.”
Best Audience Question:
This blog post has already turned into a mini-novella, so, regrettably, I’m going to have to gloss over the roundtable discussion. People had a lot of great stories about gradually overcoming communication barriers with autistic children and stories about the bigotry perpetrated against the mentally ill and disabled.
But here are a few key points from the roundtable discussion that jumped out at me:
When the parents of autistic children murder their kids, the media often describes these killings as understandable response to the stress of dealing with an autistic family member.
Clinicians used to espouse something called the “Refrigerator Mom” theory, which held that autistic children failed to develop language because they were saddled with cold, ungiving mothers. This theory was supported by studies that showed mothers of autistic children were less likely to hug their kids than the mothers of allistic children. In fact, autistic kids have trouble with sensory overload, so a hug can actually be a terrifying experience. The moms were actually doing right by their autistic children by not hugging them & were taking the blame from doctors.
Some parents who think their unborn children are at risk of having autism, go to in vitro fertilization specialists and ask that they only be implanted with female embryos. This practice is based off the statistic that women are much less likely to be autistic than men, but most experts now think that women are massively underdiagnosed because autism-spectrum disorders seem to manifest slightly differently in female brains. So not only are these families explicitly engaging in eugenics, they’re also bad at understanding diagnosis statistics.
Pop culture tells us that autistic people are off in their own worlds, but the reality is that they’re much more in the world than most neurotypicals. They spend a lot of time looking around and studying objects in their environment, but we chastise them for not making eye contact.**
When someone teaches an every day practical skill or coping strategy to a neurotypical child, it’s called “parenting” or “education”. When someone teaches the same skill to an autistic child, we call it “treatment” or “intervention”.**
Some parents have proposed putting GPS tracking chips in autistic children so that they can’t “wander” away. Reasons given for “wandering” behavior include “boredom” or “wants to go to another place.” In neurotypical children, we call that just going somewhere.***
No one addressed it head on, but almost half of the people at the discussion explicitly said that they were autistic. And if I had to bet, I would say that almost everyone in the room either had a disability (neurological or otherwise) or a close family member with a disability. The idea of neurodiversity hasn’t made it out into mainstream conversation yet. And it needs to.
**Ditto for ADHD kids.
***Haven’t heard of anyone trying to put GPS chips in ADHD kids, but we’re definitely more guilty of wandering around for no reason than the average ASD kid.
Autism Spectrum Disorder: ASD is a neurological structure variant characterized by an atypical process of organizing sensory inputs. Autistic people often have difficulty with verbal communication (as well as body language communication) and exhibit repetitive self-stimulating behaviors (like hand flapping). There are a lot of competing theories about what makes autistic brains so different, but no one has isolated a single causal neurological mechanism.
Attention Deficit & Hyperactivity Disorder: ADHD is a variation in neurological structure that affects the ability to focus, impulse control, and working memory. People with ADHD often squirm, pace, and/or daydream a lot. There are several neurological traits that are correlated with ADHD, but no single physical feature in the brain has been identified as “causing” ADHD
Neurology: the branch of medicine that deals with the diagnosis and treatment of diseases and disorders that are physically manifest in people’s brains & spinal cords
Neurodiversity: Concept in the disability rights movement which states that conditions like autism-spectrum disorder do not necessarily need to be “cured” and that autistic people should be allowed to decide which treatments are beneficial to them. A movement away from “normalizing” people with permanent neurological atypicalities.
Allistic: not having autism-spectrum disorder. People with other conditions such as ADHD and bipolar disorder are not neurotypical, but they are allistic.
Tl;dr: Many treatment and education strategies aimed at autistic people are dehumanizing and sacrifice autistic children’s well-being in an attempt to “normalize” them. Neurodiversity is a self-advocacy movement that pushes back against those education strategies. And it’s worth learning more about.
So lay it on me, guys. Do you think the idea of neurodiversity has merit? Does ADHD belong in the same category as ASD? What other conditions are part of natural human neurodiversity? If we tell kids with ADHD or ASD that their brains are defective, are we setting them up for failure or are we simply being realistic? And if you think that there should be “interventions” for people with atypical neural wiring, who gets to draw the line between what’s acceptable & what’s not? Where did we get this idea that autism could be made to “un-happen ” and what are the consequences of that? Discuss!