Sunday, April 8, 2018

An Open Letter in Response to Mad in America’s “Neurodiversity is Dead. Now What?” article

Today I had the displeasure of reading an article in Mad in America entitled, “Neurodiversity Is Dead. Now What?” Written by a Black woman whose diagnoses range from autism to PMDD, the article makes an attempt to point out what its author views as inconsistencies in the neurodiversity movement. There are six primary points made by the author in the article as evidence of problems with “neurodiversity groupthink that will kill the neurodiversity movement”:

1. In-group identity politics reportedly exist within the Autistic community.
2. The Autistic community’s position on autism and genetics (as opposed to environmental factors) is inaccurate.
3. The prevalence of autism has, according to the author,increased throughout the years.
4. The use of identity-first language by Autistics within the neurodiversity community is perceived as problematic by the author.
5. The author disagrees with the concept of an “inherently existing me.”
6. The author believes that “the neurodiversity movement is culturally biased at best, racist at worst.”

Typically when I write a rebuttal I like to frame my thoughts and words effectively. I also like to do significant research on the topic I plan to write about. Due to illness and time constraints, I am unable to do either of these things. As such, this might not be the most compelling rebuttal I’ve ever penned. However, I can’t go to sleep with this inaccurate portrayal floating out in the universe. It just doesn’t feel right. I have to say something...for my own peace of mind.

I’d like to preface my remarks by saying I do not know the author nor am I familiar with her work. I don’t, however, have to know her to respect her. She is, like I am, a Black Autistic woman who is a writer and an advocate. Most likely she and I have faced numerous similar struggles. I don’t agree with her opinion, but I can disagree in a manner that still affirms her personhood - and I plan to do so. My rejection of her narrative is in no way intended to be an attack on the character of another Autistic woman of color. I do, however, vehemently disagree with her opinions on this topic...but it’s more than that. Whether intentionally or unintentionally, in her zeal to discredit neurodiversity she asserts many falsehoods as facts, and that needs to be addressed as well.

There is a difference between the author sharing her lived experiences, which she is entitled to do so, and projecting those experiences onto an entire movement - which she is not entitled to do. There is also a huge difference between sharing one’s beliefs about a group and attributing one’s biased and untrue assumptions about said group. The author seems to have difficulty with these distinctions.

Indeed, the falsehoods can be found pretty much right out of the proverbial “gate.” Early in the article, the author declares:

“In reality, the neurodiversity movement is a public relations campaign that emphasizes the many positive qualities associated with some presentations of autism—creativity, increased tolerance for repetition, enhanced empathy, superior ability to master content in specific subject areas, and exceptional memory—while erasing or minimizing the experiences of autistics who are severely disabled.”

Essentially, this polarizing and inaccurate statement can be viewed as the overall theme of the article. With it, the author draws a figurative line in the sand. On one side of the line are the apparent proponents of an exclusionary, elitist, carefully crafted image of neurodiversity. On the other side, the “real” autistics such as the author. By portraying a false “us versus them” dichotomy, the author has already given us a preview of her intentions.

I’m going to refute the author’s six points, beginning with the first one.

However, I have to state that I believe there is some validity in the author’s claim that: “In order to establish an in-group identity, you must do so in opposition to others who have perspectives that are different from yours. That means boundaries for values and behaviors must be drawn, and those who trespass beyond those boundaries must be expelled from the group. I’ve watched the neurodiversity movement grow larger in numbers and smaller in vision, compressed by oppressive boundaries of false beliefs and a rampant thirst for censorship and exclusion.”

The neurodiversity movement is a small and relatively young movement within the larger disability rights movement, which is in itself a part of a larger movement for civil and human rights. While the Autistic community is only one part of the neurodiversity movement, it is a quite vocal and active part. While there is definitely much to admire of the work of activists within the neurodiversity movement, there have also been some things that I have personally witnessed that concern me. I’ve seen toxic and predatory behavior. I’ve seen in-fighting. I’ve seen bullying and harassment.

I’ve also seen support, encouragement, and unparalleled camaraderie. But these positives don’t cause me to unsee the other things.

But you know what? Some of the very same issues I mentioned with regard to the neurodiversity community exist within a number of advocacy communities that I am a part of. I’ve witnessed similarly concerning behavior in racial justice circles. In HIV advocacy organizations. In adoption and foster care reform groups. Frankly, nearly every grassroots movement that I can think of experiences these growing pains. Are they something we should permit and make excuses for? No. But do they happen? Yes - more than we would like to admit.

The neurodiversity movement is not a utopia. It’s an imperfect movement made up of a number of imperfect individuals. The negativity does not outweigh the positivity, but yes, there is negativity. That doesn’t negate the overall movement itself. Nor does the existence of some problematic people and behaviors mean the entire movement, or the majority of the movement, is some exclusive “Mean Girls”-esque clique.

Additionally, we shouldn’t ignore the fact that 1) communities are allowed to have different sectors within them and to possess different opinions from one another, and 2) some of the so-called division might be justified. Merely being Autistic doesn’t make someone a good person. You can be Autistic and still be ableist, or sexist, or racist, or classist, or who knows what else. Maybe you’re abusive. Maybe you’re transphobic or Islamophobic or anti-Semitic. Maybe you’re just a huge freaking jerk. No one HAS to like you merely because you share their diagnosis. There are people in the Autistic community that I am willing to admit that I straight up don’t like. They’ve done questionable, abhorrent things, and I don’t respect nor like them. I’ll fight like hell for them to have their human rights, but they’re never going to be any friend of mine. The author seems to ignore that there could be some people who have been ostracized by the community for valid reasons.


On to the second point. I’m actually not going to spend a lot of time on this one. And while it is cushioned with what I assume is supposed to be an impressive new spin on an old tale, there’s little that’s novel here. The tired, ages old “nature versus nurture” argument. Genetics versus environment argument. The “born this way” or “turned this way” argument. Like I said, nothing new here. This discussion has been rehashed more times than I can probably count, and it will continue to be a hot topic for some, but not for me. I believe in science. I believe in facts. And although anyone can “cherry-pick” a handful of studies to try to prove a dubious point, I prefer instead to rely upon decades of credible, peer-reviewed evidence instead. Evidence that clearly demonstrates the genetic component of autism.


The third point is another one that caused me to shake my head. If I was trying to poke holes in a movement I would have personally selected stronger points than these. But oh well. This, too, is another argument that has been around for quite some time; like the author’s second point, this one is another that autism conspiracy theorists are fond of. It’s the claim that what we know as “autism” isn’t really that - and that we are in the midst of an “autism epidemic.” The author cites statistics on the increase in prevalence...but she fails to address how modern advances in diagnostic tools, exponentially greater public awareness of autism in recent years, and the sad but unfortunate truth that in previous decades Autistics were frequently misdiagnosed and institutionalized easily explains this disparity. She expresses disbelief that there could be a substantial number of misdiagnoses in the past despite credible and readily available information that indicates otherwise. If I was not so tired I would include links that support my claim. But there can be easily found via a simple search.

The fourth point deals with identity first language. The author considers this to be an “over-identification.” Additionally, to try to prove her point she makes false claims about other communities that tend to utilize identity-first language, namely the Deaf community.

I’d like to clarify that within the neurodiversity community it is widely accepted that each person chooses how they wish to personally identify. The fact that many Autistics prefer identity-first language does not rob another person’s valid right and choice to self-identify as a “person with autism” (using person-first language) rather than as “Autistic” (using identity-first language). The Autistic community, again, is a part of the neurodiversity movement; we are not the movement itself. There is no consensus within the overall neurodiversity movement as to how neurodiverse individuals should identify themselves because it is a matter of personal choice.

The same can be said for the larger disability movement (and person-first language is used very frequently within many respective communities within the disability community). However, the author’s words seem to make the dangerous implication that the use of person-first language is “healthier” - despite referring to her OWN self using identity-first language throughout her article (she calls herself a “Black woman,” not a “person with blackness or femaleness”).

When Black people, queer people, and other marginalized individuals decided to reclaim and proudly identify with terms that had previously been used to disparage and “other” them, it was a radical act of strength and self-acceptance; it is for those same reasons that Autistics do it. It is not “limiting” at all; it is LIBERATING.

The fifth point seems to be another example of the author projecting her own opinion on others and assuming it to be a fact. She states: “We have no inherent, independent, unchangeable, enduring selfhood as such. To cling to a false concept of an inherently existent “me,” especially if any aspects of that “me-ness” can be hurtful to or cause division from others, is a very destructive idea.”

While the author is free to form her own opinion on this topic, there is a plethora of literature about conscious and subconscious thought, the self, and the complex internal world of humans that contradicts her assertion. Respectfully, the author is not an expert in the field of psychology, neurology, or sociology; she is only sharing what *she* thinks. This point is easily refuted.

With regard to the sixth, and final point, about racism and/or cultural bias within the neurodiversity movement...as a Black Autistic, I have to say that on its face, this claim has merit. I’ve spoken extensively about the intersection of autism and race. The Autistic, and the larger neurodiversity community is not all-White; there is indeed cultural diversity. But is it enough? Ummm...nope. This is a cross-disability issue as well (hence Vilissa Thompson’s viral hashtag #DisabilityTooWhite). And it’s absolutely a social justice issue. But to specifically address the neurodiversity movement, no, it’s not as inclusive and ethnically diverse as it should be. There has been progress in this area, and there are absolutely efforts underway from both POC and White allies to improve things, but there’s certainly no argument from my end that there’s certainly a way to go before this is adequately addressed.

However, the author doesn’t seem concerned about these specific, and legitimate areas of concern. She instead latches onto autism rates in the Somali-American community and a study about the likelihood of autism and intellectual disability co-existing as well as claims of how autism “presents” in communities of color.

I’ve been a person of color my whole life. Specifically, a Black one. More specifically, an African one (both of my parents were immigrants who moved to America in adulthood). Although I am West African, not East African like Somali-Americans, there is much that I can identify with as a fellow African (especially since I was born in the Twin Cities, which has a massive amount of Somali immigrants and Somali-Americans and is one of the hubs for Somali-American Autism research).

I have a HUGE problem with claims that autism “presents differently” in people merely because their skin has more melanin. I think it’s more about how autism is PERCEIVED in such individuals than a drastic “difference” in presentation. There’s tons of data about disparities in diagnosis rates that backs this up. Children of color who are Autistic, Black/African American children in particular, are much more likely to be misdiagnosed. And if/when they eventually get diagnosed, it’s significantly later than their peers. This isn’t even touching disturbing public school statistics about children of color and disability nor studies that clearly indicate the existence of provider bias and how people of color are adversely impacted.

Don’t get me wrong. I do think that Autistics of color have vastly different life experiences, and in some cases, vastly different outcomes than our White peers. I’m not subscribing to the pipe dream that “we’re all the same.” We are, and we’re also not at all. I get that. And as the author implies, I think the fact that the face of autism as far as society is concerned is a White cisgender male is a problem. It erases every one of us who doesn’t fit into that category. That’s a legitimate problem. However, to twist that argument and try to handcuff it to ableist and racist falsehoods about functioning labels and “autism severity” with regard to race is completely unacceptable. Autism is a pervasive developmental disability. It can exist independent of or alongside any number of diagnoses. People of color will have unique strengths and challenges that differ from White Autistics, but we're not inherently “more severely disabled” than they are, and it isn’t “groupthink” to state that truth.

The author states toward the end of her article that “stranger on the internet” shouldn’t judge her for her efforts to “heal myself of this profoundly debilitating condition.” That loaded phrase encapsulates the author’s viewpoint. She perceives herself to be affected in an extremely negative way as a result of autism, and as such she refuses to accept that there can be any validity in others’ choice to embrace both the positive attributes and the challenges they have as Autistic people. The author pleads for the neurodiversity movement to be inclusive of dehumanizing and pro-eugenic perspectives with no acknowledgement of how doing so would be akin to Autistics admitting we don’t deserve to exist.She negates others’ experiences and disregards any struggles they might have in the same cavalier, dismissive manner she accuses them of.

Neurodiversity is not dead. Equality doesn’t get “old” to those of us who are fighting for it. Mischaracterizations and outright lies about what we stand for won’t kill us off. We’re here, we’ve always been here, and we ain’t going anywhere.

Autistic activist Shain Neumeier wrote eloquently about neurodiversity in a February 2018 article. It’s a shame that the author did not read it. I’d like to end this post by quoting Shain’s words about what neurodiversity is and isn’t:

“Neurodiversity isn’t a list of words or slogans for people to use or avoid.  It’s a social justice movement, with the ultimate goal of vindicating everyone’s inherent worth—and thus their right to enjoy inclusion, freedom, and the supports that allow for both. For decades, autistic people have been in the trenches, working to end our confinement and segregation in institutional settings, to prevent schools and treatment facilities from abusing us, and to call the ethics of eliminating our community through “cures” or prenatal testing into doubt, among other goals.  This has included organizing boycotts of organizations that stigmatize or discriminate against us, advocating for state and national policies to increase access to community-based services, and publishing accounts of how the abuse many of us experienced in the name of treatment has affected us in hopes of ending it once and for all. Our guiding vision is fundamentally and categorically incompatible with support for coercive treatments like involuntary sterilization, as well as with the other beliefs and presumptions of incompetence on display in To Siri with Love.

The autistic community can only start to let our guard down and fully trust in the progress we’ve made so far once our would-be supporters have fully internalized this, and once they take their commitment to fighting with us for our self-determination, well-being, and equal worth anything but lightly.”


6 comments:

  1. If autism were only genetic, wouldn't identical twins always share a diagnosis? That isn't the case. Besides, I don't see why anyone should take offense to the idea that there are environmental factors at play anyway, because we are ALL a product of our genes and our environment.

    The only reason I am making this anonymous is because I am addressing my daughter's path, and I feel that is her story to tell, not mine. But after addressing various underlying physical issues (food allergies, pathogens), the harmful behaviors that the adult autistic community tried to tell me were just part of her autism have vanished.

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    1. It is indeed true that all humans, regardless of neurology, are impacted by our environments. I don’t think anyone would deny that. However, that doesn’t negate the role of genetics.

      Thank you for being respectful of your daughter’s privacy by not sharing sensitive details about her without her consent. I wish more parents would do the same!

      Your point about identical twins is a good one - although as a person from the ethnic group with the highest percentage of naturally occurring twins in the world, I follow twin research on occasion and have found that “identical” twins aren’t always purely identical due to genetic variation, cell migration, and other factors that are buried too deeply for me to properly recall and summarize effectively. However, it is true that it isn’t a matter of simply heredity. It’s a complex, eclectic matter that science still hasn’t fully unfolded.

      Thanks for commenting.

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    2. I do wish to add that, as I stated in the post, any number of diagnoses can accompany an autism diagnosis. Both of my children who are also on the spectrum have food allergies. One also has auto-immune issues. And they are followed by specialists for these conditions. It is a myth that the Autistic community is anti-treatment. Respectful, meaningful supports and resources can completely transform a person’s life and improve their quality of life as well. We oppose dehumanizing, unnecessary, dubious, compliance based, and coercive treatments - not ALL treatment itself. (Just to clarify.)

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    3. I also wish to point out that genetic interactions are very complex, and we don't always know how it plays out. And regarding identical twins, to say that identical twins not always being autistic means it isn't genetic, is like saying that personality isn't genetically effective because identical twins can be total opposites personality-wise even when raised the same way and with similar experiences. Because yes, personality is genetically affected, but that too is a complex thing that might be dependent on exactly which genes are activated, which may be environmental, sort of, but may also come down to random chance. And even environmental things may come down to random chance, basically - say, one part of someone's uterus has more of a specific molecule than another part of the uterus does, so one twin gets a different concentration of that molecule than another one does at a crucial part of the development stage and so they develop a different personality, or something as pervasive as one develops autism and the other does not. That does not mean anyone did something bad or that something is necessarily wrong, it's just a matter of a different set of genes being activated in each twin, whether random chance tripped different genes on their own, or random chance caused slight alterations in the concentration of different substances within the same environment. And even if some of that is environmental, that doesn't mean it's bad - plenty of animals have natural variations caused by environmental changes. Ours might not be as drastic, but that does not mean those things are automatically a problem, and, like with those other species, maybe that's just a normal part of the human condition. At least, the way autism affects personality and identity is. And if there are other problems, which there are sometimes, I see no reason why one cannot treat the other problems and leave the autism alone - nobody should have to trade away their entire selves for a stranger inhabiting their body to get problems like that to go away. Better that the actual problems (i.e. auto-immune issues, motor disorders, etc.) get treated while the autistic identity and personality is left alone.

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    4. Great points. Thank you for commenting!

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  2. This is beautiful, and I thank you so sincerely for writing this. The work you do is valuable, and I don't know why this doesn't have a million replies.

    I'd love to share this (or any) of your writings on www.theaspergian.com if you're willing.

    Brilliant. <3

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