Tuesday, April 10, 2018

“Neurodiversity Is Dead?” Ion think so. Letter to the Mad In America Editor.

(Image is an autism acceptance word cloud of multiple colors. Source: unknown)

Today I wrote a letter to the editor and the president of “Mad in America” about an ableist and disturbing article that they published on their site.

Here is what I wrote:

“Dear editor,

I am writing to express major concerns over your recent piece, “Neurodiversity is Dead. Now What?” Aside from the numerous inaccuracies it contains, it is a gross misrepresentation of neurodiversity and Autistics in particular. 

I’m a Black Autistic woman (born to African immigrants) who was diagnosed later in life. I am also a parent of both Autistic and non-Autistic children. None of my children are “Aspies” and in fact one has an intellectual disability. Others have speech impairments. My concerns are not limited to one particular “type” of Autistic. Human rights are for EVERYONE. That’s what neurodiversity is about.

Ms. Hiari conflates things in a manner that is extremely problematic. Neurodiversity is not anti-growth. We ARE anti-eugenics. But not anti-support.

There is no fault nor shame in needing and seeking respectful, meaningful supports and treatments for incontinence, self-injurious behavior, migraines, aggression, cognitive challenges, sensory differences, seizures, GI problems, or any host of co-occurring diagnoses a person might have. 

Additionally, as someone who is both Black AND of DIRECT, immediate African heritage, I am extremely bothered by the implications of the remarks about race the post makes - and how that plays into already existing, biased, discriminatory perceptions of people of color. 

As a part of the Mad Pride movement, I am bothered by this attack on the Autistic community and I am saddened that you all apparently endorse these troubling beliefs. 

I believe a retraction and public apology is in order. I don’t expect it to happen, though, unfortunately.”

I received a reply from the Mad in America president this afternoon. As I have not sought permission to post his reply to me on a public platform, I will not do so. (He was cordial enough.) However, neither his assessment of the situation nor his reply itself sufficiently addressed this problem. I’m disappointed, but not surprised.

I have other matters to attend to. I have a sick child; I have dinner to prepare; I have work that needs to be taken care of. There are people in crisis within my community (Autistics of color) who are in urgent need of support and attention. I cannot afford to squander any more spoons over this article. I tried; I failed. It’s still up and apparently its author and the MIA editorial team feel it deserves to stay up regardless of the way it mischaracterizes and stigmatizes me and people like me. I can’t change their minds and their hearts. But hopefully I can change that of others. So while I think this is a matter worthy of attention, I cannot deal with this any longer. So I am going to share with you my response to the editor’s reply to my email, and then I am going to leave this in my friends’ and colleagues’ capable hands to address. And in God’s hands too...

My reply is below:

Thank you for your prompt reply to the email I sent expressing my concerns over the “Neurodiversity is Dead,” article that you published on Mad in America. 

You stated that Twilah’s piece met your editorial standards of “trying to envision and create a more humanistic, supportive way of thinking about ‘psychiatric’ difficulties and differences, and thus about providing support/help to people who may be struggling in this way,” 

And also that 

“...we want to be open to diverse opinions about how to create a more humanistic, supportive  way of thinking (and of care).”

Humanistic can be described as: “having a strong interest in or concern for human welfare, values, and dignity.”

Supportive can be described as: “giving support; providing sympathy or encouragement; providing additional help or information

Support can be defined in this manner:

“to bear or hold up (a load, mass, structure, part, etc.); to serve as a foundation for; to sustain or withstand (weight, pressure, strain, etc.) without giving way; to serve as a prop for; to undergo or endure, especially with patience or submission; to tolerate; to sustain (a person, the mind, spirits, courage, etc.) under trial or affliction; to maintain (a person, family, establishment, institution, etc.) by supplying with things necessary to existence; to provide for; to uphold (a person, cause, policy, etc.) by aid, countenance, one's vote, etc.; to back; to second; to maintain or advocate (a theory, principle, etc.); to corroborate (a statement, opinion, etc.); to act with or to second (a lead performer); to assist in performance.

Rereading the post, and most specifically the last two paragraphs that you referenced in your reply, I am very confused how you and your staff came to the conclusion that her post was “also setting forth a humanistic vision of what might be possible.”

I have quoted the last two paragraphs of her post below (in italics). Beneath each section I have referenced portions of a position statement from the Autistic Self-Advocacy Network. I do so not to imply that ASAN is the “voice” of all proponents of neurodiversity as ASAN certainly has its critics, and they likely have valid reasons for their criticism. But the policy statement is a good, easily accessible compilation of information and I believe these statements at least are generally aligned with the concept of neurodiversity as it pertains to Autistic people on ALL parts of the spectrum. 

When I read this, it is clearly which view is advocating for a “humanistic and supportive” perspective...not Twilah’s.

It begins below.

I propose that autistic people move beyond tyrannical groupthink. 

(My commentary) Some of the terms used to describe tyranny, from which tyrannical is derived, include: “cruel, oppressive, harsh, unjust, arbitrary.”

(My commentary) With regard to groupthink, a formal definition is that of “a group that makes faulty decisions because group pressures lead to a deterioration of ‘mental efficiency, reality testing, and moral judgment.’ Groups affected by groupthink ignore alternatives and tend to take irrational actions that dehumanize other groups.”

(My commentary) Neither of these are “humanistic and supportive” ways to describe others.

We should balance promotion of our talents and skills with honest acknowledgements of our environmentally induced challenges. 

“There are real challenges associated with autism and other neurological differences. The social model draws a distinction between the underlying condition, which exists regardless of cultural attitudes, and the disability, which consists of everything that goes into society’s representation of the condition. In advocating recognition of the civil rights and dignity of Autistics and others with disabilities, we are not overlooking the existence of such challenges. Rather, we are seeking to create a world in which all people can benefit from whatever supports, services, therapies, educational tools, and assistive technologies may be necessary to empower them to participate fully in society, with respect and self-determination as the guiding principles.”

We should make room for more perspectives. 

“When the message of autism awareness becomes one of stigma, dehumanization, and public hysteria rather than one of civil rights, inclusion, and support, we face a grave threat to our efforts to be recognized as full and equal citizens in our communities.”

We should support more research into the environmental risk factors for autism so that the most incapacitating presentations can be prevented. 

“More research is needed in areas such as communication, service delivery, education, and community supports that will have practical applications for improving the quality of life of Autistic people and our families. Autism research grants in recent years have gone mainly toward genetic and other causation-oriented studies with potential eugenic consequences, while studies focusing on educational practices, assistive technology, best practices in providing services and supports, and effective supports for community inclusion have received far less funding. These skewed priorities are unacceptable.”

We should also support more research into modalities that can heal the most severely disabled among us, or any among us who choose healing. 

“No neurological type is superior or inferior to any other. We do not discriminate against or exclude any Autistic person because of their diagnostic category, support needs, or disabilities. We oppose the practice of separating Autistics into high- and low-functioning groups, which incorrectly suggests that people function at the same level across all areas. Each of us has a unique set of skills and challenges; a person who requires assistance in one area does not necessarily lack ability in another. Functioning labels significantly downplay the uniqueness of each individual, leading to artificial and inaccurate classifications that can cause Autistic people to be denied either services or opportunities. The Autistic Community includes all people on the spectrum regardless of their diagnostic category or their support needs.”

We should move towards unity with the rest of the human race rather than division, by emphasizing our humanity over our autism.

“Like any other minority group, we have the right to respectful and equal treatment in all aspects of society. Although offensive depictions of autism and disability are not the only barrier that must be confronted in the struggle for inclusion, quality of life, and opportunity for all people with disabilities, the issue is a significant one because cultural perceptions shape the reality of our lives. By challenging harmful and inaccurate representations of autism and disability, we can advance a broader and more effective agenda for our community as we seek to bring about a world in which all people with disabilities are fully included and accepted in school, at work, and in society at large.”

That’s the end of that paragraph. Before we go to the final paragraph, let’s revisit what Twilah wrote in the paragraph immediately preceding this one:

But we have to recognize that not all environmentally modified brains turn out well. Some of us can’t perform the fundamental activities of daily living independently. Some of us have are caught in a loop of sickness and self-harm and engage in biting or other types of violence against other people.

Let’s contrast that with the policy statement, which declares:

“The United States Supreme Court has declared that every American with a disability has the right to live in the most integrated setting. This requires that sufficient funds must be made available for services and supports to enable community participation.

Many therapies and products for Autistic children and adults are helpful and should be made more widely available, such as physical therapy, speech therapy, occupational therapy, and augmentative and assistive communication technology (including supported typing, facilitated communication and other methodologies that support communications access).”

Here is Twilah’s final “I know I just crapped all over you, but ‘can’t we all just get along!’” ending paragraph:

We are beautiful, we are complex, we are worthy of love, and we are entitled to integration into our communities and workplaces. We must move forward with a commitment to truth and a dedication to not only our own well-being, but also to the well-being of those with whom we interact. In embracing truth, we embrace a commitment to growth, maturity, and harmony.

And the policy statement reads:

“Every person is worthy of inclusion and respect, whatever their support needs may be. We view the Autistic community as one community, encourage self-advocacy among all people on the spectrum, and also work with parents and other allies who share our goals in the interest of ensuring for everyone the rights of communication and self-determination.

We advocate for greater support and understanding for adults and children on the autism spectrum. Within the broader context of the disability rights movement, we seek to bring about more accommodation and acceptance of neurological diversity in our society. We believe that self-advocacy is essential to this process and that there must be meaningful involvement of Autistic individuals in making policy at all levels: Nothing About Us Without Us.”

You noted that the piece has generated a lot of attention. Yes...but at what cost? Just because people are reacting to it doesn’t make that a good thing. This article has triggered and demoralized many. Myself included. And I have enough to deal with without being othered, lied on, gaslit, and treated in a despicable manner by a publication that is *supposedly* an ally of mine given that my diagnoses include psychiatric ones.

As you concluded your email, you stated, “Perhaps our own perspective on the blog was flawed. We certainly fail some times in our review of submissions. But I hope at least that you can, in this reply, see what our goals are.”

I do believe your perspectives on the blog were flawed. I think the post is very ableist, contains a number of falsehoods, falsely attributes beliefs to a community that are not held, and stigmatizes the very Autistics (i.e. those who are nonspeaking, intellectually disabled, and/or need support with ADL) she claims to be “advocating for.”  People who have high support needs like my very own intellectually disabled son, who is not what Twilah would consider in the autism “sweet spot.”



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.”