Saturday, September 14, 2019

Distorting DEEJ: Deconstructing A Misinformed Literature Review

Production photo of David Jame Savarese (Deej), a thin white male  with short, cropped hair and glasses, wearing a light blue polo shirt and beige  slacks, seated at a table facing his girlfriend who is seated in a power chair  back to us, facing  him. A man holding a camera is standing to their left and  caught in the act of filming them. ©DEEJ movie
[image: Production photo of David Jame Savarese (Deej), a thin white male
with short, cropped hair and glasses, wearing a light blue polo shirt and beige
slacks, seated at a table facing his girlfriend who is seated in a power chair
back to us, facing  him. A man holding a camera is standing to their left and
caught in the act of filming them. ©DEEJ movie]

Kerima Çevik

"A distinguishing feature of scientific thinking is the search for falsifying as well as confirming evidence. However, many times in the history of science, scientists have resisted new discoveries by selectively interpreting or ignoring unfavorable data." Wikipedia on Confirmation Bias

I understand that professionals who aren't familiar with autism and autistic lived experience may carry biases about non-speaking autistic people. I don't accept it, but I understand it. We're human and all of us have biases. When bias becomes a problem is when academic work begins with a conclusion, for example that non-speaking autistic people must be presumed incompetent. I get seriously disturbed when scientists who know better lay out academic work to support a bias. It is personal to me, and so hurtful that I felt the need to write why.

I am an African American woman. What that means is that I and everyone who shares my race continue to be targets of something called scientific racism. Scientific racism, at its core,  is misusing scientific structure and scientific reasoning to support false claims of racial superiority in general, and was one way of oppressing Black people in particular—which makes me more alert to this kind of bias when I see it used against other marginalized groups.

I am also very outspoken about the unjust treatment of autistics like my son. Full disclosure, my son is non-speaking and uses an iPad with the app TouchChat HD as his primary communication support, as part of his multi-modal communication system. He does not use FC (Facilitated Communication) or RPM (Rapid Prompting Method). But for anyone who doesn’t know any better and is watching an AAC (Adaptive and Augmentative Communication) user in a documentary, my son and someone who used those communication methods would look similar.

Representation of true non-speakers in the media is usually limited to inspiration trash or objectification to gain funding. That is why it was gratifying to see DEEJ, an award-winning documentary about DJ “Deej” Savarese, an AAC-using non-speaking autistic adult with complex support needs. This kind of representation for us people of color—outside of stereotyping in media—also began with movies, television series, and groundbreaking documentaries. There is no acceptance in a society where groups of people are not represented as three-dimensional human beings. I watched DEEJ and came away feeling it had earned its awards.

So when Social psychologist Craig Foster's article, "Deej-a Vu: Documentary Revisits Facilitated Communication Pseudoscience" was published in Behavioral Interventions in August of this year, I read the title and flinched. Not looking forward to doing so at all, I acquired and read the review. This is what I learned:

Foster's background is not in the diagnosis, care, or treatment of autism. He does not have a background in speech pathology or Augmentative and Alternative Communication (AAC). Foster's focus seems limited to skepticism and concussion non-disclosure research. I wonder why he chose to write about DEEJ? He could have simply done his review on the history of Facilitated Communication (FC). Instead, his deliberate targeting of Savarese by compiling any negative literature on FC he could find comes off as a reductive approach to the documentary DEEJ, as well as one that aims to erase the film’s actual message of inclusion and representation.

Perhaps Foster is uninformed about the catastrophic role psychologists have played in the history of autism. From Asperger’s alleged Nazi collaboration, to the debacle and destroyed lives of Bruno Bettleheim’s expansion of Kanner’s “refrigerator moms” view of autism, to Ivar Lovaas and his conversion therapy cruelties, psychology has continued to destroy autistic lives. I’d like to say this has changed, but autistic children are still being given electric shock punishments at the Judge Rotenberg Center “for their own good.” With this kind of track record, the task before these professionals should be to regain the trust of their non-speaking autistic clients and their families. But here, Foster singles out a non-speaking autistic and his family to push the regressive idea that we must be skeptical of any non-speaking person's claim to competence.

Foster's review tries to rebrand the DEEJ documentary on inclusion as some sort of infomercial for FC. He claims he was filtering and inserting FC as a topic, so skepticism could be placed in the minds of those evaluating the film. I find this unnecessary. If the viewer doesn't know what FC is, what they would see in the film is someone using pads, laptops, and in some cases, pen and ruled notebook pads as AAC support. When I viewed the film, I simply accepted the equipment as AAC support because the film made no effort to explain otherwise. FC was not the focus of the film, so it was neither emphasized nor discussed.

Foster's review cherry-picked only the scenes from the documentary showing the use of supported typing. He speculated about Deej's intelligence and competence to produce speech through AAC devices without having met, assessed, or researched anything about Deej, including how Deej communicates with support staff when they have not trained as FC facilitators or even how the Dynavox narrations were achieved in the documentary. Instead, Foster uses select scenes to conclude that Deej communicates entirely via FC, therefore, he must be presumed incompetent. There’s no mention of whether Foster followed up with anyone to verify his conjectures about the nature of Deej’s education, interactions with support staff, communication methods, or achievements.

I decided to do what Foster hadn't done. I reached out to the Savarese family. I learned from Deej himself that he has had 52 teachers, 22 professors, 18 school support assistants/facilitators, 15 after-school assistants, 5 speech therapists, 4 occupational therapists, and 6 principals in 2 different school districts over 18 years. To my knowledge, Foster did not interview any of them. Foster commenting on Deej's diagnosis and the scope of his intelligence was a misuse of scientific reasoning.

To prove his point about FC, Foster also ignored scenes that complicated his thesis, like the scenes in which Deej toured Washington D.C. with his cousin. Deej's mother leaves a notepad of scripts with printed words so that the cousins can communicate by having Deej point to responses to any query by his cousin. Meaning Deej toured DC without a facilitator and communicated without FC. When Deej begins his pioneering attendance at Oberlin, he has support staff who are not trained in FC who help him transition. Yet Deej is seen making transitions and participating in activities that indicate competence. His efforts to self-regulate in response to his parents' requests for him to try and self-calm show receptive language acuity—he clearly understands what people are saying to him—and the cognitive competence to overcome moments of anxiety that might normally end in autistic meltdown or shutdown.

If Foster's literature review was stripped down to his analysis of Deej's competence based upon his viewing of a 72-minute documentary, Behavioral Intervention would have received intensive backlash for violation of section 7 in the American Psychiatric Association's (APA) Principles of Medical Ethics, otherwise known as the Goldwater Rule. The Goldwater Rule was put in place to keep mental health professionals from conjecturing a diagnosis of a public figure's competence without proper in-person examination and assessment. I believe that targeting the documentary, then using negative and sensationalized literature on FC as a weaponized tool to justify this sort of armchair diagnosis, is a violation of the Goldwater Rule by proxy.

Filtering and presenting this film as if its entire purpose was to promote FC is inaccurate at best. By forcing academic focus away from the documentary's themes of interdependence, inclusion, and the presumption of competence, Foster does harm not only to the FC community but to people like my son who continue to suffer maltreatment because of the same scientific ableism that produced Foster's review.

As we have no accurate way of measuring intelligence without language proficiency, and literacy is often denied to non-speaking individuals without AAC support of some kind, can any psychiatric professional generalize the latent intelligence of non-speaking people with intellectual and developmental disabilities (ID/DD)? Yet this is exactly what Foster does when he posits,"Other aspects of the documentary suggest that FC's purported ability to reveal hidden intelligence is once again illusory. When a speaker calls Deej's name for a National Honor Society ceremony, Deej's mother needs to prompt Deej to walk to the stage.

I confess I paused here and burst out laughing. Foster obviously doesn't know anything about autistic processing delays, or what event crowds, camera/cellphones flashing, and the roar of applause does to someone autistic in public spaces regardless of their degree of disability. Deej's disorientation during this event is unremarkable. He's autistic! His response was a completely natural reaction for any autistic adult. In fact, this is why his father’s surprised reaction and verbal exchange between his parents ended in their rushing to provide support. Just because an autistic person wants to try to get through a high-stress event on their own doesn't mean support persons shouldn't be there in case things go wrong. Foster's mistaken analysis of this scene does not support his thesis. It simply verifies that David James Savarese is an autistic adult who reacts as any autistic adult would in a similar situation.

Foster plows ahead with his thesis: "When Deej and his mother pack to move to Oberlin, Deej's mother explains to Deej that some clothes are too small—he keeps them for sentimental reasons. Moments like these are easy to miss, perhaps because it is easy to forget the expectations that the documentary sets for Deej. These moments might seem compatible with a young man who has autism with complex communication needs, but they do not seem compatible with a young man who has earned his enrollment in Oberlin College."

Again Foster's lack of experience with autistic people and literature about autistic life experiences is evident in this paragraph. Just last month, a mother went through great lengths and succeeded in getting a larger size of the only dress her autistic daughter would wear. Presenting a common autistic behavior—intense attachment to meaningful objects—that is typical regardless of communication or support needs as evidence of incompetence doesn't really stand up to scrutiny.

Even if we remove Deej's disability from his desire to keep clothes he's outgrown, Foster would still be off the mark in his conjecture. Many of my high school classmates left home for college with stuffed animals, dolls, favorite clothing they had outgrown, even baby blankets that held special memories for them. No one claimed this proved they were not competent to earn their places at their universities.

I have questions about Foster's superimposing negative FC literature on the mention of sexual abuse in the documentary as well. He said: "Messages about human sexuality also reflect old problems with FC. Facilitated communication has generated accusations that specific persons have molested FC users sexually. When subsequent investigations failed to support the FC-generated accusations (e.g., Siegel, 1995), it forced additional consideration about who was doing the accusing: the user or the facilitator? Likewise, when Deej's computer-generated voiceover states “I see scary people who want sex” and his poetry refers to prostitution, viewers should wonder whether these words reflect Deej's perspective on sexuality or a facilitator's speculation."

Let's address the topic of FC-generated false reporting of sex crimes. Foster cites Siegel, 1995. But he doesn't mention that this brief used only two subjects and did no general statistical analysis comparing the number of FC generated false reports to the number of false reports of the same crimes in the overall population. We all agree that the risk of a false indictment is dangerous. But we have no statistical understanding of how FC related false indictments compare to non-FC related false indictments. I am trying to understand how Siegel can generalize, or come to any conclusion from, her sample of two subjects, that the risk of false reporting/indictment is higher or lower than the general population. Siegel found that communication wasn't established in these two subjects.

How can one confirm or deny anything without establishing communication with either subject? Dr. Siegel does not employ any other method of communication (a yes/no switch for example) to try and establish a baseline. We do not know if Dr. Siegal had the specialized training for this type of investigation. We don't know how many interviews the two subjects were made to submit to because of their use of FC. Foster cites Dr. Siegel without mentioning her first sentence in paragraph 3 of the discussion section on page 325 where she states: "This study does not rule out the possibility that there are individuals who may communicate via facilitation when they cannot communicate orally, via sign language or via communication boards." Indeed it cannot rule out the possibility because only two subjects were evaluated.

We are currently witnesses to the extremes of skepticism against science. I am concerned that approaching topics like FC that require longitudinal study, with confirmation bias like Foster’s, will push public opinion further away from the scientific community.

Foster's brief exploration of Deej as a vehicle for encouraging improper forms of scientific reasoning confused me. He says, "Deej, the person, is not necessarily representative of the diverse group of people who have complex communication needs. Even if Deej were to demonstrate hidden intelligence, it would not prove that hidden intelligence is widely prevalent. This hasty generalization could be akin to making a documentary about Lionel Messi and suggesting that Argentinians are incredibly talented footballers. Hansson (2013) described the use of hand-picked examples as a "characteristic associated with pseudoscience."

But isn't Foster himself hand-picking examples of Deej's documentary and lived experience to frame his own thesis in this review? Does Foster's literature review then fit Hansson's description of a characteristic associated with pseudoscience? Or is this further evidence of confirmation bias in Foster's review?

I can't stress enough that Foster's statements reveal a lack of understanding of the challenges faced by non-speaking AAC users of any kind. When he said, "Still, evidence that Deej can communicate hidden intelligence independently is simply not there," I again feel Foster is evaluating from his armchair without factoring the impact of autistic comorbid conditions and characteristics in his conclusions. Again Foster has no qualitative research on Deej to back up his assertion.

Foster's unconcerned opining of Deej's degree of disability is very similar to the racial bias found in medical doctors. I actually feel that if FC wasn't part of the DEEJ documentary at all, Foster would have still approached his literary review with the presumption that Deej was incompetent, given his statment, "The documentary instead provides explanations for the lack of independent communication that follow the explanations provided by FC supporters generally. Deej's computer-generated voiceover states that no assistive device can do what his mother does and that sometimes he experiences anxiety that disrupts his ability to communicate."

I disagree with Foster's implication that Deej is discussing his mother's role as a facilitator alone. Foster does not mention the scene in the film when Deej's grandparents tell his mother that she is the only consistent thing in Deej's life during his stressful transition from the home he's known most of his life to another state and an unknown university campus. Deej, in essence, loses everything from proximity to friends who have known him since early childhood to his father who can't be with them during this transition. Foster also excludes the fact that by the end of the documentary, Deej has transitioned to the Oberlin dorms, and his mother's role is reduced to simply managing his support team. The documentary mentions Deej’s relief at having his mother return to the role of just being his mother.

I want to talk about Foster's mention of the use of a pen as a prompting object to direct Deej's typing. There is tremendous hypocrisy in how psychologists compare their own methods to those used to support typing. Hand over hand techniques and other invasive prompting is common practice in Applied Behavioral Analysis (ABA). ABA is the only therapy for autism with mandated insurance coverage in most states despite valid ethical concerns verified by recent research into ABA and PTSD in autistic clients. Behavioral psychologists do not claim that any writing done by hand over hand prompting is abusive of autistic clients. If you ask a behavioral psychologist why they are using hand over hand prompting they will tell you that the goal is to fade the invasive prompting over time so their clients eventually write independently. It is hypocrisy for psychologists to champion such methods, while dismissing the support of individuals who have physical barriers to typing.

While Foster included a non-apology to Deej's family consistent with his policy on respectful skepticism, any heartfelt sincerity in such apologies is lost if those delivering them are undermining a human being's right to be accepted as a competent contributing member of society while doing so.

And Foster's flawed literature review, unfortunately, introduces a taint of confirmation bias to any future publication he pens on this topic. The documentary DEEJ deserves better and so does Deej Savarese himself. I recommend that anyone viewing DEEJ watch the film with an open mind. No one's filtered view, including mine, should interfere with the sharing of one human being's story of adoption, freedom, and hope for his marginalized peers.


Friday, September 13, 2019

Things Left Unsaid: "I Am Autism" 10 Years Later

 Screen capture from the Autism Speaks Video "I Am Autism," with  an African American child sitting on a slide, facing away from the camera. The YouTube video toolbar is visible, above title text reading, "I Am Autism commercial by Autism Speaks"
[image: Screen capture from the Autism Speaks video I Am Autism, with
an African American child sitting on a slide, facing away from the camera.
The YouTube video toolbar is visible, above title text reading,
"I Am Autism commercial by Autism Speaks".]

Zephyr Ash Ostrowski

“Where there is charity and wisdom, there is neither fear nor ignorance.” -St. Francis of Assisi

“There is nothing more frightful than ignorance in action.” -Johann Wolfgang von Goethe

“Where ignorance exists, myths flourish.” Norman Begg and Angus Nicoll

It doesn’t take long for a hurtful word or comment to make its way across the globe. The media eagerly reports on officials’ latest xenophobic remarks within minutes. Protesters will gather and complain for a corporation to sever ties with a controversial program or person. But this outrage somehow doesn’t happen with organizations that are directly tied to “helping” certain groups of marginalized people—and when said people speak out, their opinions are brushed away in favor of “better” ones that best fit the organization’s agenda.

In 2019, the autism community still faces this discrimination, specifically from the organization Autism Speaks.

To say the autistic community has had a strained relationship with Autism Speaks (AS) is an understatement. Ever since their formation in 2005, AS’s existence has been a point of contention, and their rhetoric has landed them in more than a few scuffles with autistic advocates. Between their 2007 merger with Cure Autism Now, their dogged support of the hoax-based claim that vaccines cause autism (only dropped in 2017), questionable allocations of their funding for autism, having their board consisting of primarily neurotypical people with a smattering of autistic people for show, there’s a lot to pick from in terms of shortcomings.

Despite fourteen years of pushback from autistic people and allies, not much has changed. For World Autism Awareness Day 2019, Autism Speaks’ Twitter feed focused solely on how neurotypical people celebrate autistic people like myself, save for one lone tweet from an autistic person. However, despite the many ways in which AS has failed the very community they are supposed to serve, there is one episode in their history that still sends shudders throughout the autistic communit—the notorious 2009 short film I Am Autism.

While I Am Autism is indeed inflammatory, it wasn’t Autism Speaks’ first brush with controversy in the film world. In 2006, they sponsored a documentary short called Autism Every Day that squarely focused on the parents of autistic children and the struggles involved with their children’s upbringing in the most catastrophic terms possible. Now, I’m not dismissing that parenting children, especially disabled children, is difficult. However, the film is problematic, and not only because there are three different cuts (the shortest version clocks in at seven minutes and is currently an unlisted video on the official Autism Speaks YouTube page). Autism Every Day is extremely exploitative in how the children are filmed, almost always in the middle of a meltdown or, as in one dehumanizing shot, of a mother wiping her son during a diaper change—keeping in line with the bizarre tendency to detail the toileting habits of autistic people in works from neurotypical perspectives (as recently happened in the British play All in a Row). Everyone in the Autism Every Day video is white, obliterating any sense of diversity—save for one autistic girl. The film’s main takeaway is that autism is a massive problem that will drain your finances and free time.

One of the most troubling parts of the video features former Autism Speaks executive Alison Singer. While her autistic daughter is present, Singer admits that she considered killing herself and her daughter by driving off a bridge, because of inadequate classrooms. The only reason Singer gives for not following through is the need to be present for her other, non-autistic child. Still, the admission of intent to commit filicide, especially when your child is disabled, should never be taken lightly.

It was later revealed in an article for WireTap Magazine that the mothers featured in Autism Every Day were told to have their children look ill-groomed, and to stop any treatments or supports, for a more “authentic” view. (The fact that the film starts off with the children in the middle of multiple meltdowns should raise red flags in anyone who is media-literate.) Understandably, Singer’s filicide remarks were met with harsh criticism from advocacy groups. And four days after the film debuted, Karen McCarron murdered her autistic daughter Katie. Whether or not Karen saw Autism Every Day is unknown, but the immediacy of that event has raised some eyebrows—and even now it’s not difficult to find viewpoints that we’re better off dead than alive and autistic.

Then, in September 2009, Autism Speaks produced I Am Autism—a film some autistic people still find so upsetting that they can’t even read the transcript. Consisting of home video footage of various autistic people, both alone and with family, it would be misleading to say that this was “created” by filmmaker Alfonso Cuaron and Autism Speaks board member Billy Mann (who provided the text) but rather “assembled.” I hesitate to use the term “edited” since the end results are well beneath Academy Award-winning director Cuaron’s usual caliber. But the public had few details about the film’s genesis until Mann made a lengthy post on his Facebook concerning the history of the short in February of this year—a half-hearted apology at best. (Mann removed the post on September 12, 2019, due to threatening messages against his family, but it was archived and transcribed.)

Originally, Mann planned to read a poem as a speech for a gathering of Britain’s cabinet, and some leaders in the autism community, involving statistics that were already known. However, Mann wasn’t too keen on the dryness of the figures because it “…won’t move anyone to see the urgency. It doesn’t capture any of what we experienced when Jasper (his child) was diagnosed or the actual grief you can feel for the loss of what you thought your child’s health was going to be.” Instead he wrote what became the text for the I Am Autism video, and after he read it there was not a dry eye in the house. Later that same night, Autism Speaks co-founders Bob and Suzanne Wright were hosting a private dinner. Suzanne told Billy that this message needed to be heard, and at the end of the event, she got him and Alfonso Cuaron to make the I Am Autism project come to life, even though noted autism researcher Simon Baron-Cohen worried that the “high functioning autistics (might) take offense to this notion.” (In short: yes, autistic people did.)

I Am Autism is divided into two distinct parts: the Dark and the Light, which are differentiated by the tone of voice, the language, and the music. Several sources point to the first half of I Am Autism being similar to the text in the 1954 polio film Taming the Crippler, but similar sentiments can be found in the 1948 March of Dimes fundraiser film The Crippler and other polio-centric pieces of the era. (Unlike autism, however, polio can be a literal death sentence.)

In the Dark, and in a brooding voice not unlike typical portrayals of Satan, “Autism” tells you how it works “faster than pediatric AIDS, cancer, and diabetes combined,” causes your marriage to fail, bankrupts you, slaughters your social life, crushes all hope, among other fear mongering phrases. Footage of its “victims” clad in white shirts are shown to us. Some of these shots are of candid moments of stimming or playing in the water; the rest are all clearly staged with each person standing or sitting in rigid positions. Diversity isn’t exactly present as most of the people shown are white males, save a sprinkling of girls and minorities. Granted, this was when the high male ratio statistic was touted, leaving blue to be the chosen color to represent autism awareness because of the biased concept that blue is a boy’s color. “Autism” ends its speech even more unpleasantly, by saying that “you should be scared” and it was a “mistake” to ignore Autism, while strained children’s screams enter the soundtrack.

But hark! What blue light through yonder window breaks? Why, it is the Light, the Autism Parents, here to scare off the beast that is Autism with the power of love and caring! I don’t blame you if Care Bears comes into your mind at this point, because the rest of the script sounds like the locker room motivation speech in every sports film. Unsurprisingly, the parents speak over their autistic progeny as they enter the frame to stand in solidarity. They announce that “We are Qatar…the United States…the United Nations” in an effort to state that autism knows no borders (which is a true statement). In what is one of the greater ironies within the autism community, we hear this quote:

“You think because some of our children cannot speak, we cannot hear them? That is autism’s

There’s quite a bit to unpack here. First of all, verbal communication is not the only form of
communication in existence. Autistic advocates like Amy Sequenzia prefer to type to communicate rather than using mouthparts. Also, the emphasis on autism affecting only children reinforces the belief that autism ends at eighteen (it doesn’t). The film also reinforces misconceptions that autistic people who use clear verbal communication to express opinions and ideas aren’t “autistic enough” to claim the autism label, which leads to weird gatekeeping with goalposts that are always moving. And that’s just one of many battles still affecting autistic people, aside from our push to remove functioning labels in favor of the terms “high support” and “low support,” eliminate sub-minimum wage, push for support in adulthood beyond the transition period, and boost the employment rate for autistic people—among other woefully underfunded and understudied ventures.

I Am Autism ends with the question of “Autism, are you listening?” Well, people did listen and their reactions were swift. After the film's debut, many autism advocates and disability organizations protested by using press releases, video parodies, and public demonstrations. Autism Speaks’ chief community officer Marc Sirkin responded with an interview, saying that “We believe that all perspectives are valid and need to be heard and respected. No one perspective can ever be the definitive voice of autism.” This particular quote rings hollow as years have passed yet autistic people still have to fight to have their perspectives recognized. At the time, however, and after a few weeks of protest Autism Speaks removed the video from their website and eventually their YouTube channel. (Fans of Mystery Science Theater 3000 will remember that show's end credits mantra, asking viewers to “Keep Circulating the Tapes” so that they will not be forgotten. I Am Autism can still be found on a handful of YouTube channels, as well as Vimeo.)

There have been few apologies for I Am Autism. Billy Mann only looked back in regret seven months ago. Alfonso Cuaron’s take is harder to find; sources tell me he apologized while doing some press for his movie Gravity, but the footage has proved difficult to track down. And Autism Speaks itself still hasn’t apologized. Yes, their rhetoric has changed a bit, but I Am Autism remains one of their largest blemishes.

Their next big step backwards came in late 2013 when co-founder Suzanne Wright wrote an op-ed on Autism Speak's own website about how autistic people “aren’t really living.” This caused enough pain in the community to cause John Elder Robinson to resign from the organization, leaving Autism Speaks without an autistic person in a position of leadership for two full years. The op-ed has since vanished entirely from AS’ site, but it’s not clear if this followed Wright's death in 2016, or if it was due to public relations damage control.

At the moment, Americans are reeling from shootings in El Paso, Texas and Dayton, Ohio. Unfortunately these tragedies led to more targeting of marginalized people, as the President is suggesting bringing back institutions to keep people who are mentally ill from obtaining guns, instead of doing the sensible thing by passing tight legislation and requiring strong background checks. Such proposals are incredibly dangerous and lethal as institutionalized people, including many autistics, are already subject to various abuses in the name of “health” (the autistic community’s fight to close the Judge Rotenberg Center is one of particular concern). Even more distressing is that the person collaborating with Trump on this proposal is none other than Autism Speaks co-founder Bob Wright, who led the NBC television network during the era of Trump’s reality show The Apprentice.

Recently Autism Speaks made waves yet again due to hijacking Sesame Street’s autistic  character Julia as a mascot for their “Screen for Autism” initiative, which includes a “100 Day Kit” that  suggests parents of newly diagnosed autistic kids need to go through the five stages of grief. In response, the Autistic Self Advocacy Network issued a press release ending their partnership with Sesame Street—despite their long-standing participation in Julia’s creation and portrayal. (This was the second time in 2019 that autism and puppets resulted in controversy.)

After more than ten years of conflict, what is it that the autistic community wants from Autism Speaks? Some people consider the organization irredeemable. Others want a heartfelt apology and a complete overhaul. However, historically any apologies they do make have been either for the benefit of the neurotypical crowd, or Orwellian deletions on their website. As for the AS board, it isn’t enough to have neurotypical parents and autistic people at the table—the bottom line is that the autistic people must lead the conversation. It’s an uncomfortable thing for some people to reconcile, but if Autism Speaks is intent on making amends with those they’ve hurt (especially for a widely-recognized organization that has a history of not listening to the people they serve), this needs to happen. Until it does, it’s up to all of us to put the pressure on AS. To quote the final Pink Floyd song from their final album, The Endless River:
“It’s louder than words, the sum of our parts. The beat of our hearts is louder than words.”

You Can’t Have Neurodiversity Without People With Intellectual Disabilities

How The Self Advocacy Movement Is Integral to the Success of the Neurodiversity Movement

Ivanova Smith. Photo courtesy author.
[image: A Latvian-American person with short dark hair and glasses.
They are smiling and posing near a house on a shoreline, at dusk.]

Ivanova Smith

With all the anti-neurodiversity stuff going around right now, I'm going say this: Intellectually disabled (ID) Autistics have been left out, that is true. But how? When people want to take away forms of communication like Facilitated Communication (FC) and Rapid Prompting Method (RPM), which is what anti-neurodiversity people want, that is is a form of silencing. That is how autistics with ID have been left, out because their form of communication has not been respected!

Saying AAC users' communication is not real and is fake is what is really silencing people. By not supporting behavior as communication, that is how people are being silenced. By saying autistic people with ID can’t handle being at the table with the other advocates, that how they are being silenced.

By saying you have to use academic words and not use plain language materials, that is how Autistics with intellectual disabilities are silenced! By saying they can’t have thoughts ands feelings, and ignoring that they don't like being treated like kids, that is how they are silenced!

By saying they need to be institutionalized and segregated and their labor is not worth the same as non-disabled people's labor, that is how they are silenced! Being denied an education is how people are silenced! Yes, of many my peers have not gotten the education I had, and that is why I am now demanding they get the same! My mother should not have had to teach me to read to get me a better education! That is what wrong, that many are denied a good education based on not having support at home. It is wrong and it needs to end!

People who can’t read ever should also not be denied an education, that is how they are silenced. If you were never taught about your rights, you're never going to know them and then eventually you won’t press to learn them. It sickens me that our education system is doing that, and only allowing some, not all, to learn about their rights! I hate this, and it never should been that way once we had IDEA, the Individuals With Disabilities Education Act! Nobody should have been segregated!

Another way ID autistics are left out is when we are mocked and laughed at for not knowing something, or are not using the right words. Getting made fun of is no fun and lots of people with ID and developmental disabilities like being positive, not negative.

It seems like big fish eating smaller fish is the history of the disability rights movement! They didn’t stop IDEA from segregating students, and they didn’t stop the isolation and restraints. All they did was pit disabled students against fellow disabled students. Just like in institutions.

Segregated special schools and neo-institutions are not the answer, but that is what anti-neurodiversity organizations like NCSA wants. They don’t advocate for communication, but instead ABA and restraints and institutions. That is awful and it is not going to help anyone. These orgs and people don’t speak for Autistics with intellectual disabilities!

These organizations want to focus on people with intellectual disabilities, but they ignore the self advocacy movement and autistic people with ID like me. We don’t want institutions! We don’t want segregation, we want freedom and autonomy and support in the community! They just need to see what the ID community has been asking for!

Another thing I would add is there are areas the ND movement can improve on! I don’t like idea of creating more rules. Conferences that make it so everyone is quiet are not accessible for intellectually disabled autistics who may need to repeat words to themselves, and use vocal stims. We may ask lots of questions, and may need to clap as a stim. By making all these rules they are leaving the more impacted autistics out! My friends who play in the Special Olympics with me and who are non-verbal are very loud and they clap. I fear they would not be welcome in many ND spaces.

And that is a problem. Autism accommodations are not just about keeping everything quiet. That leaves lots of people out and I am going be honest and say that is something ND activists that support those rules need to think about! That maybe a hard pill to swallow for my ND friends, but the rules about noise in conference can make a barrier with those who have more high support needs. Many autistics that need more support needs can’t sit still and be quiet, they will need to make noise or clap as stims.

I tried to talk to a prof who is a big ND activist that has a autism program at their college, and they wanted to enforce a no clapping rule and I tried bringing up the concern of autistics with intellectual disabilities who have clapping as a stim, and I got my head chewed off. That is a problem. It is one of the biggest reasons I am not going to that conference! Intellectually disabled autistics that clap and make noises and run around should be welcome too, not just quiet Autistics.

I am tired of vocal Autistics that use vocal stims being shamed and treated as less-than by ND conferences, and this needs to be called out! I am tired of it! I hope those who have more influence and power try to educate them, because they won’t listen to me.

Non-speaking autistic people with intellectual disabilities lots of time make vocal stims or clap as a stim, and that need be celebrated and accepted too: not just quiet autistic but all autistics. Even those who jump and hum in middle of a meeting! They all need be accepted!


This post is based on a Twitter thread by Ivanova.

Saturday, August 31, 2019

Forcing Friendships Doesn't Equal Autistic Youth Gaining Social Skills

My son's first friendships were with family.
[Image of a hug between Mu and his adult big sister. His back is to the camera.
His sister is smiling. Posted with the permission of the subjects.
Image by their father, Nuri Cevik.]
Kerima Çevik

"How do I handle my child seeing the children of every new family who moves into the neighborhood surrounding us included in outdoor play knowing he is being excluded from the group?"

I saw another parent posting this question as one of the most frequent questions autism parents ask as their kids become preteens and teenagers, and I cringed a bit. It is a common concern for all families with autistic youth trying to navigate a world where they are often othered and mistreated. My son and I also see them when we hang out on our deck or the backyard in the summer, or on snow days. Kids his age, teenagers, will for the most part either ignore him, ridicule him, or ask to do his respite care to fulfill their community service requirement at school. They never ask him what he wants.

That last bit is particularly anger-inducing. Asking for my son as if you are doing me the favor of walking the family dog is dehumanizing to my son in a dismissive way that reeks of ableism on steroids. These are not the kinds of interactions that will help him build the self-confidence he will need to navigate this world after his father and I are gone. He needs to understand that random people may be ableist and some people are dangerous. He needs to know that some will offer friendship as a ruse to some other end. He must be given the chance to interact enough to grasp the differences between true friendship and all other types of approaches.

My son is not just Autistic. He is the son of a Black woman. Survival social skill building is a requirement of being Black in America. Like code-switching to gain access to better education and employment opportunities, knowing who hates you and what that looks like can keep you alive. In approaching/considering my son’s interactions with others, my racial and ethnic experiences inform my stance on his human rights.

Parts of my childhood were spent in areas where my siblings and I were the only African American children in predominantly white neighborhoods and schools. We were in North Carolina in 1972, where "This is Klan Country" billboards appeared on highways in several parts of the state. We never lived or went to school with the expectation of friendship. We were taught to survive the environments, which were for the most part hostile to us.

My mother was an educator. Her parenting flaws were legion but she had a tendency to rise like a phoenix in times of adversity. When I came home at age twelve with a bruise on my cheek asking what an n-word was, she pulled out an unabridged dictionary and had me look it up. Then she told me in terms that I could understand what this slur was meant to do and why it was untrue. We discussed how I would handle my bullies. She warned that even those in authority might hold biases and turn away while I was being beaten and how to reduce situations ripe for being dragged off and beaten up at school in the future.

My mother said something to me back then that was life-changing. She said people were not required to like me or befriend me. They were required to respect my right to exist, to move in the same space, and to be treated equally under the law.

That is what I want my son to learn. I want him to know, as an Autistic person, that he can choose to befriend someone or not. An autistic young person has the right to have an active and willing agency in the process of deciding who to befriend, what boundaries should be set on such friendships and who they are just not comfortable with. Before any of that can happen, they must understand not to comply with every demand made to them from everyone. They need to understand they have a right to say no to people. And they need to know what kinds of behaviors are abusive and wrong.

But I don't see this happening with parents. The focus is on finding friends, even finding dates when children become teens and adults, without assessment or understanding of their children’s needs, wants, or ability to protect themselves from harm. This goes hand in hand with the belief that friendship by any means necessary with "normal" teens will "rub off." As long as parents force friendships their autistic kids will someday go to sleep at night and wake up magically typical in the morning. Any sign of intolerance from their autistic offspring for whatever the parent views as ideal social interactions with peers is then a behavioral challenge needing to be imposed not only on the disabled child but on peers in the neighborhood. This escalates to pleas to communities to create normalizing events by inducing pity for the autistic child or young adult to elicit a response from the schools, friends, or neighbors.

I hope I never embarrass my son by blasting a social media demand that someone come and befriend him without his consent. He played with other children on playgrounds until he didn't wish to go to them anymore. The noise of a gaggle of young folk filling a sidewalk and refusing to yield to his wheelchair is not particularly pleasant for him. If the non-disabled peers who are his neighbors don't even have the courtesy to yield when needed unless he glares at them, how can I as a parent demand that those same teens befriend him?

Contrary to assertions that these forced experiences are a necessary part of the social skills process, the aggressive demand of parents that other teens interact or befriend their autistic teen can backfire by being off-putting. Negative responses from teens cliques/groups parents wish their autistic teen was part of are NOT teachable moments. My view is that my son is a human being, not a social science project. He doesn't exist to teach his non-disabled peers tolerance.

Two cautionary tales of autistic teens irrevocably harmed by the mistaken parental idea that somehow they had neighborhood friends are the cases of the autistic teen boy in Ohio who was assaulted by five teen males with bodily fluids during a faked ice bucket challenge, and the case of an autistic teen boy who was systematically tortured during snow days and holidays by two teen girls. In both cases, parents spoke of insisting their teens leave with their abusers, even when they showed reluctance to do so.

The parents spoke of being relieved their offspring had made friends with typical neighborhood peers. They had no idea their children were being victimized by their "friends." The need for the parents to want their children to have friends in order to make parents feel better overrode possible red flags about these relationships they might have spotted immediately otherwise.

In contrast, every person who has genuinely befriended my son has come directly to him, not me, and extended their hand or signed to him or asked him if he would like to sit with them. They made it clear to my son that they wanted his friendship and their intent was transparent. And yes, they knew he was a nonverbal autistic. They only asked how he communicated, respected boundaries, and made an effort to find activities that allowed him to see us and understand he could return to us anytime he wished.

My point is simple. We parents shouldn't push friendships on our autistic children because we think they need to have them to reach a goal of being indistinguishable from their typical peers. We shouldn’t presume their incompetence at acquiring friends or berate them for not having any or enough friends. We should not create or force participation in events requiring typical partners and then send social media lamentation that our kid is autistic and has no friends when things don't go well. What parents do by this behavior is to broadcast across a global platform that they have a vulnerable disabled person who is friendless. They broadcast that they are willing to force their autistic loved one to comply with anyone who presents themselves as a potential friend to them. This destroys our young people’s self-worth, reinforces the belief that they must comply with everyone’s demands, and leaves them with a sense of helplessness and lack of agency in their own lives.

Look at what your autistic offspring like, what they want, and how they navigate the world first. Consider what would work for them. Then sit with them and however they communicate with you, explain consent and boundaries. Only when parents are certain their autistic teens want friendship facilitation and understand boundaries and consent should friendship facilitation happen with the active agency of the autistic teen. Otherwise, this is about us, not them.

P.S. Friendship facilitation does not mean broadcasting your teen's lack of friends online or trying to gaslight other teens into taking them to events like homecoming dances, proms, or birthday parties. It means looking for meetups and events that will be accessible to your autistic teen, asking them if they want to participate, and allowing them to leave if and when they wish.

This could save our children from irreparable trauma.



A version of this article was previously published at The Autism Wars.

Thursday, August 29, 2019

Autistic Burnout: An Interview With Researcher Dora Raymaker

Dora Raymaker is a researcher, writer, and artist based in Portland, Oregon. She is co-director of the Academic Autism Spectrum Partnership In Research and Education (AASPIRE) with Christina Nicolaidis. AASPIRE is currently running a pilot study on autistic burnout and suicidal behavior. Autistic people have often talked about burnout, and it emerged as a major theme in their previous study on autism and skilled employment, but up to now, it has received limited attention from researchers.

Fergus Murray interviewed Dora for Thinking Person's Guide to Autism.

Photo courtesy Dora Raymaker
[image: Dora Raymaker, a white person with
curly shoulder-length red hair with one teal
lock, glasses, and a steady gaze.]
FM: Could you summarise what autistic burnout means to you?

DR: The question evokes for me the impacts of autistic burnout on my own life, like "it means feeling my abilities and successes slip away and being powerless to stop it..."

But I think it is more asking, "how would you define autistic burnout?" I think that's an important frame for the rest of the conversation. We're still a finalized-analysis away from coming up with a definition grounded in research, but a fair start at an operational definition might be, "A state of pervasive exhaustion, loss of function, increase in autistic traits, and withdrawal from life that results from continuously expending more resources than one has coping with activities and environments ill-suited to one's abilities and needs." In other words, autistic burnout is the result of being asked to continuously do more than one is capable of without sufficient means for recovery.

FM: There has so far been very little research on autistic burnout, although it is something autistic people have been talking about for a long time. Why do you suppose that is?

DR: Autism research, until fairly recently, has been mostly directed by non-autistic researchers, professionals, and family members whose priorities may be different from, or not fully inclusive of, the priorities of autistic people. Add on top of that a still-pervasive medical model of autism in the research world (disability as a disease to be cured, rather than disability as a divergence to be supported) which makes it even harder to get through the barriers between what we've been talking about wanting and what autism research is actually examining. This is a complicated topic I could probably spend the whole interview on, so I'll stop my geekery about it there, LOL.

Anyway, I'm hopeful that we'll have more research about autistic burnout (possibly disability burnout?) in the future. Autistic people have more voice in research than we used to, from the policy level to the participant level. Also I'm anticipating the surge of work into connected topics, such as camouflaging and mental health, will bring autistic burnout more into the awareness of the research community.

FM: How do you see the relationships between burnout and other experiences often reported by autistic people—meltdowns, shutdowns, sensory overwhelm, and catatonia?

DR: These other experiences are distinct states from burnout, but people report experiencing them far more often when also in a state of burnout. If we consider autistic burnout as a reduction in resources to cope with activities and environments that were already difficult—including by camouflaging and all the negative consequences of that—then it makes sense that a person would be left with less ability to tune out sensory stimulus, breathe through their trauma-reaction, or otherwise avoid the triggers for these other states. Nearly everyone we've spoken with in our research cited increased instances of these experiences as a consequence of the burnout.

FM: Have you been able to show what some effective strategies for coping with or avoiding burnout might look like?

DR: We asked people in our interviews what strategies helped them avoid or recover from burnout. We also looked at social media, where people have been sharing strategies. The community has also been compiling this information, and there are some good resources out there, like this guide from Autistic Women and Nonbinary Network (AWN). I recently did a talk at Seattle Children's Hospital on the research, and the slides from that talk also list a number of the strategies. You can get the slides here, and the talk should be available on YouTube at some point. Until then, it was recorded on Facebook, and you can view it there.

The tl;dr version: being accepted for who you are as an autistic person and supported by others, being able to act autistic and do things that fuel you (like engage in special interests), taking time off, and having a reduction in expectations to do things in the same way as non-autistic people are some of the primary things that help.

FM: Many autistic adults report that they only realised they were autistic (or only received professional help) after experiencing burnout. Some may have talked to specialists before this, and been denied a diagnosis because they were not seen as sufficiently impaired. Do you think it might help some people to avoid burnout, if it was easier to be formally identified as autistic without insisting that someone's autism must 'limit or impair everyday functioning'?

DR: Yes, absolutely. Even just realizing that you're probably diagnosable could be helpful, because it gives you access to community wisdom, and the strategies people use.

However, if the dynamic of autistic burnout really is related to spending more resources coping than one has, I'm not sure the real leverage in avoiding burnout resides with the autistic person alone. Especially because a number of the strategies people have to avoid or recover from burnout involve being able to act more autistic, being accepted as autistic, and getting support and accommodations--all things that require the cooperation of others. So we need to also be looking at ways to make neurodivergence more accepted and less stigmatizing, as well as ways for services to become more inclusive of supporting autistic people who appear to be "functioning well." Knowing you're on the spectrum, alone, isn't, in my opinion, going to fix this.

FM: Some have suggested parallels between autistic burnout and Chronic Fatigue Syndrome. Do you think this is likely to be a fruitful connection to explore in future research?

DR: I'm not a clinician and don't have interest in clinical research. However, there are clinicians like Christina on my research team. Her impression from descriptions of autistic burnout are that it's likely a different thing from CFS (although one could certainly be experiencing both), and that addressing autistic burnout directly is probably going to help more people than looking for a possible relationship between it and CFS. That said, it could be research for someone else with interest in that area to explore.

FM: You’ve completed the first stage of your study, interviewing ten autistic people about their experiences of burnout. Did any surprising themes emerge in these interviews?

DR: Since many of the people on our research team have been part of the Autistic community for years where autistic burnout is frequently discussed, I’m not sure that there were any particularly surprising themes to us. One of the themes that might be most surprising to the general public is that some things they might think are good for autistic people—learning to emulate mainstream social behavior, appearing to “overcome” autistic traits, things like that—may actually be hurtful in the long-term. I think it makes sense if a person thinks about it—if you were asked to pretend to be something you’re not constantly out of fear of negative, possibly life-threatening consequences, and it was very difficult to do, how long could you keep it up? I think it might surprise some people how close autistic burnout is in a lot of ways to professional burnout, or to caregiver burnout, or something else that they might have experienced themselves.

FM: You plan to develop tools to measure burnout in the second part of your study. How might you go about measuring something like that—and what sorts of uses do you foresee for it?

DR: Measurement is a whole field of research in itself. This study is using a mixed-methods approach to create a survey. That means first we’re doing this qualitative part to understand what ideas, or “constructs,” might need to go into a survey to measure autistic burnout. We’re putting together the symptoms of burnout that people talked about in their interviews, on the blog posts, in the community to create a draft of that measure. Then we’ll be trying the survey out with a small number of participants. They’ll take the survey, along with some additional surveys, and be able to give some written feedback. We can then run statistics on the results to start validating the measure. We can learn things like, does the survey contain the right constructs? Do the sections of the survey group together well? Is there an expected relationship between scores on the autistic burnout survey and another survey; for example do people with high burnout scores also have low self-efficacy scores (since people in our interviews talked about a loss of self-confidence when in autistic burnout)? These are all parts of validating a measure. Then we refine the measure and test again.

As far as uses, there are many. Two big ones related to the work I’m most interested in are: 1) It can be used to tell if someone is experiencing autistic burnout, which could then change how services or supports relate to that person; 2) If anyone creates an intervention, or a program of some sort, to help prevent or relieve autistic burnout, a measure will be needed to know if the intervention is working; in other words, you need to be able to measure it to know if you have changed it.

FM: What’s next for AASPIRE?

DR: A lot! We have multiple projects, including our ongoing work on issues such as healthcare and employment, and a new branch of AASPIRE starting up in Australia. You can visit to see some of what we’re up to. As far as the burnout research, the next steps after finishing up this study are 1) to publish papers in the academic and clinical literature to start getting the word out, and 2) to apply for new funding to further test the measure and begin exploring further how autistic burnout impacts people’s lives, so that we can start working toward creating an intervention to prevent or relieve it—as well as giving others tools to do the same.

Wednesday, July 31, 2019

Stop Claiming Autistic People Who Commit Sex Crimes "Don't Know Any Better"

Cropped photo of a shadow of two people, on grass. A foo t in a woman's black flat shoe is visible on the lower right.
Photo © Jan Olof Nygren | Creative Commons
[image: Cropped photo of a shadow of two people, on grass.
A foo t in a woman's black flat shoe is visible on the lower right.]

Zack Budryk


A show that ran as long as Law And Order is, naturally, going to have some off days. I’ll admit to occasionally tuning into the show’s seemingly never-ending basic cable blocks as a guilty pleasure. One of the telltale signs you’re about to watch one of the shitty ones is when the culprit is apprehended about 20 minutes in. When it’s taken care of that early, you know the trial portion of the episode is going to revolve around the perpetrator’s lawyer arguing that their client killing people is a medical condition or something similarly absurd. So you can imagine how irritated I was, to say the least, when someone decided to pull the same trick  in real life.

The Internet is vast and contains multitudes If, for some reason, you want to identify the absolute worst people on here, there are several ways you could go. There are the neo-Nazis of course, but there are also the mass-shooting truthers, the guys who call everything “free speech” and of course, whoever wrote this.

But a top contender is the “pickup artist” community, a blanket term for various oily sleazes who purport to teach men to score through tactics aimed not at genuinely being more appealing to women, but at manipulating them or wearing down their resistance. As you might imagine, obtaining consent is often neither here nor there for these people, and some of the subculture’s most famous faces, such as sex tourist Roosh Valizadeh, are admitted rapists.

Which brings us to Jason Berlin. Berlin was sentenced to prison for participating in the rape of an inebriated woman in 2013. At the time of his crime, he was paying for seminars that claimed to train men in pickup artistry, or “game,” in their parlance. Last week, Berlin’s lawyer argued in a sentence-reduction hearing that Berlin had recently been diagnosed with an autism spectrum disorder and as such was not aware raping women was wrong. It’s difficult to know where to begin with something this obscene and absurd. It brings to mind theoretical physicist Wolfgang Pauli’s reaction to a poorly written paper: “That is not only not right, it is not even wrong.” Berlin’s defense claimed he was manipulated by his co-defendants, Alex Smith and Jonas Dick, and that he had the “social and emotional capacity of a 5-year-old,” according to the Daily Beast.

As an autistic man who’s been married for five years and in a relationship for nearly a decade, I have a front-row seat to the ways this argument is bullshit. First of all, while autistic people are in fact susceptible to manipulation from neurotypical people, we also have strong senses of right and wrong. This is especially true when we’re younger. For example, when I was in fourth grade I printed up a broadsheet about how my classmates were sliding into juvenile delinquency by saying things “sucked” because my parents had forbidden me to say it.

Berlin, autistic or not, actively boasted about the incident and blogged about his goal of having sex with 15 women over a three-month period. The defense’s implication that simply having autism made Berlin an incompetent child is difficult to square with the $2,000/month apartment Berlin rented for himself and his partners. Paying rent and maintaining an apartment are relatively complex life skills. Local coverage of the trial noted that while Berlin was unemotional in his apology, he “cried openly when his mother turned and faced the victim and apologized to her.” I realize our understanding of autism is constantly evolving, but what’s described here sounds less like autism and more like “not actually being sorry.”

This argument is offensive because it plays into the stereotype that autistic people as exclusively white men who have problems relating to women. This ignores the fact that not only do autistic women, exist, but they too are susceptible to manipulation and are at high risk of sexual abuse as a result. By treating autism as some kind of brain parasite that removes men’s capacity to know rape is wrong, Berlin and his defense have reinforced those stereotypes and actively made these women’s lives harder.

Like a lot of people on the autism spectrum, I struggled with modern dating rituals until I found a partner who clicked. It’s true that dating is an environment that can be particularly fraught for autistic people. But—and I didn’t expect to have to clarify this, yet here we are—there’s a difference between “getting a date is confusing” and “I don’t know not to have sex with someone without their permission.” In trying to blur these lines, Berlin is infantilizing himself and all autistic people and playing into misconceptions that allow non-autistic people, often with ill intent, to step in and presume to speak for us. It also plays into the insidious, well-established tradition of connecting violent crime with autism as in the cases of Sandy Hook shooter Adam Lanza, misogynistic spree killer Elliot Rodger, and, not a week after he murdered 58 people in Las Vegas, Stephen Paddock.

A spotlight is currently shining on just how easy it is to prey on women in our society in general. To blame what Berlin did on autism is not only ableist and scientifically unsound, it ignores our disturbing tolerance for this kind of behavior. Something makes men like Berlin decide not that what they do is wrong, necessarily, but that the wrongness of what they do is irrelevant. If we focus on autism, rather than whatever that thought process, is, we won’t do anything to prevent future Jason Berlins. All we’ll do is continue to stigmatize autistic people.


This article was previously published at NOS Magazine.

Thursday, July 11, 2019

Being Hyper-Verbal Is A Real—And Disabling—Autistic Experience

Two Vietnamese men, seen from behind, wearing billed caps and squatting as they have a conversation. The man on the right is gesticulating with his left hand
Photo © ePi.Longo | Flickr / Creative Commons
[image: Two Vietnamese men, seen from behind, wearing billed caps and squatting as
they have a conversation. The man on the right is gesticulating with his left hand.]

M. Kelter

Content note: This article discusses suicide risk factors specific to the autistic experience.

I worry that too many people think of hyper-verbal autistic speech as being synonymous with "articulate" or "fast" or as something purely beneficial. This is actually not correct. Hyper-verbal autism is autism, and it is a disability. I want to provide a few details about how it generally works, so that I can draw a line connecting it to what people generally think of, when they think of autism.

I am on the spectrum, and I was fortunate enough to spend a few years working with a specialist who taught me the parameters of my particular way of engaging with language. We found that my verbal processing tends to create difficulties for me when it connects up with three factors: Emotional volume, thought speed, and social pragmatics.

What I am going to describe here is the way hyper-verbal speech works for myself—one, non -representative individual—and the way that these factors are exactly what you would expect to find in the realm of autism.

Some who have children with significant degrees of intellectual disability feel like conversations like this can obscure what they call "real" autism. But this, too, is incorrect. The distinction they are making only manages to cut the common thread that connects varied autistic experiences into a coherent neurological profile.

To explain what I mean by that: there simply is no reason to see different experiences with autism as mutually exclusive, as if they are in competition for territory. Autism is a disability that impacts communication. And because there is predominantly a genetic basis—there are currently 102 genes associated with ASD—you would actually expect for people on the spectrum to be very different from one another. The genetic complexity means that people are taking many different neurological pathways into an autistic profile.

The unifying component of autism is communication, not the many individualized forms communication can take. If you focus only on differences at the expression side of autism—whether someone is verbal or non-verbal—you are going to skip over that essential shared ground. Variations are not invalidating of a diagnosis, they are what you would expect to find in a condition this genetically heterogeneous.

So, that's how the different types of autistic communication link up, but I do want to go into some detail about accelerated language since it is one of the ways that autistic communication happens.

Take that word "accelerated" and think of hyper-verbal speech as an accelerant or a fuel, something combustible that can turn volatile when mixed with the wrong variables (like fire, for example). Then take that accelerant and throw it on a mood.

When words are naturally assembled in such a way that they bring a detailed, granular focus to an experience, it can become quite destabilizing if that experience is an emotion. The words take the volume of a mood and turn them to a much higher level.

Hyper-verbal autism is no joke. It is not an affectation. When anger or depression or self-hatred gets a boost from this kind of added intensity, it can be very difficult to steer in a better direction. The interplay between mood volume and hyper-verbal speech is under-discussed and under-appreciated as a risk factor for suicide in autistic people. Please believe me when I tell you this.

These concerns include risks for children, as well as teens and adults. If you are a parent and you do not believe me when I say this kind of speech can be extraordinarily difficult to manage, ask another parent of a hyper-verbal autistic child. I am quite confident that they will tell you, at least in many cases, that the internal fights these children go through as they battle with their own words; it can be a terribly difficult situation.

If we are thinking of words as a kind of fuel, thoughts are what drive the vehicle. The speed with which words can form and race to new and varied patterns can make concentration a daily, hourly nightmare. I am rarely able to concentrate. Simple tasks are not simple. Every possible thought is instantly ten alternate thoughts that quickly grow to a hundred and then more and when you take that head space into a grocery store or a school test or a job interview, most of every day can feel like an incredibly frustrating obstacle course.

That's internally. Externally, people interpret your concentration issues a lot of way. It can scan as not paying attention, as rude, as flighty, as indifferent, as lacking empathy (because you're too overwhelmed to notice subtle emotions and people, not understanding autism, feel neglected and inadvertently spread myths about empathy) and so on. The concentration issue alone can lead to significant degrees of impact and disability when it comes to daily functioning.

Take the mood thing, the thought thing and imagine how they play out in the middle of a real-time social interaction. It can be extremely disruptive. The impact of this kind of autistic speech can be significant and—due to the hostile reactions it receives from the rest of the word—it can easily lead to depression and social isolation.

Via front-line observation, I can report to you that in social contexts, hyper-verbal autistic speech functions like a chain event. As a child, I had social needs, I liked approaching other kids and sharing my thoughts, but that's now how interactions work. You have to know the social codes and hidden social rituals, and my words blew past all of that like a boulder going downhill. I would approach kids and start talking out of my head in a deluge of monologue, and that only ever drove kids away, or elicited bullying (aka violence). Mood disorders and social isolation ensued. It was a chain event.

To be clear, the answer back then would not have simply been to have me talk less. People tried that, but it didn't take because that's not how autism works. The answer would have had a lot more to do with changing the way people react to autistic differences, but we can take that up in another post.

If you are someone who generally believes that hyper-verbal autistics are arrogant, or have it easy, or that they do not have "real" autism: please know that you do not understand what autism is, and you are not helping autism conversations. What you are doing is are disparaging a group that doesn't need more disparagement. My only hope is that you can sense that I am trying to share good information with you here, and that you do not need to shout at autistics on twitter because they said a thing.

I honestly believe people will have an easier time understanding the autism spectrum the instant they stop creating nonsensical barriers between autistic people and their lived experience, and the ways that they engage with communication. New school, 2019 autism is simply a better conversation to have. I did not like the old one.

Thursday, June 27, 2019

The Kelsey Honors the 20th Anniversary of Olmstead

wheelchair, and a bipap mask; a white man with brown hair in an undercut and a mustache & beard; and a Black man with very short gray hair.
Alice Wong, John Marble, and Leroy Moore
[image: Stylized photo of an Asian-American woman with bobbed black
hair, a motorized wheelchair, and a bipap mask;
a white man with brown hair in an undercut and a mustache & beard;
and a Black man with very short gray hair.] 
There are few better ways to spend the evening than at an event for inclusive housing initiative The Kelsey, in celebration of the 20th anniversary of the Olmstead decision—"the most important civil rights decision for people with disabilities in our country's history"—with an amazing panel of disability advocates: Alice Wong, John Marble, Leroy Moore, and Micaela Connery. We were lucky enough to do just that last night, and now we'll share what we learned with in this lightly edited transcript of our live-tweeted coverage of the event. 

Listening to Alice Wong of Disability Visibility Project talk (with a dash of salt) about why needing supports doesn’t negate innate independence & autonomy. And how public funding of supports keeps PWD like her in the community, & out of institutions. Even when it’s not easy—& she still feels vulnerable.

The annual redetermination process is laced with anxiety for people who depend on it. And it is a poverty trap! She can’t earn more than $2K (which is less than 2.5x the poverty level) without losing benefits. So she has to pass on paying opportunities all the time.

This is not in keeping with the spirit of the Olmstead decision, e.g., a lot of disabled people do not have the freedom to move between states, because anchored to state-specific benefits.

And community based services (HCBS) look very different state-to-state (though there’s never a barrier to institutionalization!). And most states still enable sub-minimum wage for PWD, which keeps the poverty trap cycling hard.

Did you know: People who depend on SSI often can’t get married, because that means their benefits will be reduced? There is no marriage equality for many disabled people.

Recently, a high-profile story of Anna Landre, a Georgetown student who had their support hours reduced resulted in those hours being reinstated. But how many other PWD have support hours arbitrarily reduced without any recourse or resolution?

There are also social and physical barriers to PWD taking part in their legal right to voting, e.g., every SINGLE US presidential candidate’s website is inaccessible to Blind people. IN 2019. #CripTheVote

Every disabled person can have the life they want!

John Marble is feeling a bit abashed in having to follow Alice, which is totally understandable.

John is the founder of Pivot Diversity. Talking about how even though he’s never been institutionalized, he’s always had a fear of institutionalization. Which, turns out, is not actually that irrational, because most autistic people his age & slightly older WERE.

Example: Darryl Hannah was diagnosed #autistic as a child, but was able to evade institutionalization because her mom was able to homeschool her until she was ready to attend school with her peers.

John says that he always feels like he is one step away from losing everything because he’s autistic—and in talking with other autistics, he’s not alone. It is a stark fear, shared with many autistics.

The number of disabled people killed by police, especially PoC, is a bracing reminder of how far we have to go even 20 years after Olmstead and the ADA.

So John does not want Institutionalization to be the path for the future. At the very basic level, PWD have the right to live in the community. Not just reside. LIVE.,

John is now throwing shade on people who use “the voice” when talking to autistic people.

He wants other autistic people to have the right to be DULL and BORING. Per James Baldwin on the bizarreness of perceiving difference as bizarre.

PWD, autistic, and neurodivergent people deserve to be integrated into society and as normal as anyone else!

Now Micaela Connery of The Kelsey is talking about the 20th anniversary of Olmstead, and how everyone always assumed her cousin Kelsey, who was a disabled person with high support needs, should be institutionalized—and how it was a life-long fight for her entire family to keep her in the community.

If you read the fine print behind the ableist parts of Olmstead: No matter how high a person’s support needs are, they have the RIGHT to live in their own damn community. (I may be paraphrasing.)

Living in the community doesn’t look the same for everyone! Whether in the general community, living, employment, school—but the baseline is the same. Everyone belongs.

Even when institutions are surrounded by rolling green hills and aesthetically pleasing environments, when people have no control over their schedule and autonomy, those differences really don’t matter. Institutions sap their residents’ souls.

Now: Leroy Moore of Krip Hop Nation. He used to live in San Francisco, but he got gentrified out.

Poor Magazine has been fighting against institutionalization/eviction of poor people and elders. Sometime successfully, but sometimes landlords blocked. And elders died from the stress.

Under former mayor Willie Brown, San Francisco wanted to get rid of all the public benches. This is trend that’s spread all over the country.

Under Obama, public housing was eroded in every major city. And people with disabilities (PWD) depend on public housing. So how are PWD supposed to get out of institutions if there’s no place for them to go?

Under Housing Secretary Ben Carson, increasing amounts of public housing are coming under non-profit and private companies’ control. So PWD and others who used to live in those communities can’t move back.

One time, Leroy was stuck on the third floor of his building for an entire month because the elevator was out of order. The lawsuit is still pending.

Under former California Governor Jerry Brown, the conservatorship laws undermined access to SSI and independence for many PWD.

Anti-poverty and anti-disability laws are making things harder all over the country. We have people taking housing away from elders because their places are “messy.” What can we do? Poor Magazine has been on the forefront of this issue.

We need funding for public housing and related disability programs so PWD can stay where they live and live where they want to.

Right now, Poor Magazine is working on building housing in East Oakland.

There is basically no low-income housing any more. Leroy Moore feels like he’s hanging on by a thread, and he’s not alone. When the current president pushed to exterminate housing programs, the only person who came out against it was Rep. Maxine Waters.

And it’s not just housing. IDEA, funding for special education, has NEVER been fully Federally funded. People with disabilities of all ages remain under attack in the US.

Leroy Moore has been to the disability caucuses at DNC conventions—and there was no one there. NOBODY. Just a video of FDR. That tells you how much politicians value PWD.

We need to destroy conservatorship law, as it goes against Olmstead.

The one in-need housing population that is really growing is disabled elders. This is a violation of civil rights, and we need to do better.

The floor is now being opened to questions.

Q for Alice Wong on the intersection of disability/Asian people/women. Though she doesn’t have five hours to do properly address the issue, here's the short version: she consistently sees that disability leadership is… white. This has to do with who gets amplified. Which gets in the way of Asian/other POC identifying as disabled.

Disability activism needs to be more welcoming. Alice is wary of being tokenized. She wants to be valued for all of her amazing talents! There are a lot of people who share her identities out there. She wants them to be visible too.

“Fuck the model minority myth!” Alice got a D in trigonometry! The stereotypes of Asian-Americans as model citizens and students and coming from wealth is damaging, and limits Asian PWD from getting mental health and disability supports/community.

Audience member who is Autistic and Black talking about how he was running for a BART train because he was late, then got detained by the transit police because he fit the description of a perpetrator. It was really distressing.

John Marble was asked by a local newspaper about a story on autism and restaurants. And he really didn’t want to be the token white male autistic; he insisted on having an intersectional grouping of autistics.

He ways we have to change the narrative that we project and make it more inclusive. Starting with having autistic people on the boards and staff of autism orgs because most of them (MOST) really do not include autistic people at all.

Alice: EVERY issue is a disability issue, e.g., mass incarceration. And prisons are just another form of institutions/warehousing. There is so much trauma that is created and compounded in those environments.

Immigration is another huge intersectional disability issue, e.g., family separation and the trauma that it creates. Not to mention that PWD are having all of their disability supports (like crutches and other devices) removed as standard procedures. We need more solidarity.

Disability rights are civil rights are human rights.

Leroy Moore: Moses had a disability. So PWD have always been here. The problem is that people are just not doing their homework.

Also, reports of police brutally about PWD/people of color are generally not done by or informed by PWD/people of color. We need community-informed resources.

Leroy Moore: Poor Magazine has a workshop called “Never Call The Cops.” These are the kinds of resources disabled people of color need, these resources save lives. This is what the community needs, NOT more police training.

Elders are dying on the streets. PWD make up a huge proportion of homeless people. He’s been to cities in FL where people were kept in cages on the SIDEWALK. We need to think outside the box.

If you want disability justice, go to Sins Invalid.

Micaela Connery: Disability is a lens that is too often missing from formal social justice and housing policy work, even when race and SES lenses are applied. This needs to change.

Alice Wong: if allies want to think of themselves as co-conspirators, they need to support the orgs that are already doing the work, like HEARD and the Autistic Self Advocacy Network (I missed the first org noted, so sorry). Props to ASAN Director Julia Bascom, and see their Resource Library.

John Marble: Autistic and disabled people are the experts in their own lives! Imagine what could happen if even 1% of the money splashed all over autism causes and orgs was given to the autistic people who know what to do with it to change autistic lives for the better?

John recently took on Fiona Ma for spewing ableist crap all over the disability caucus at a Democratic convention.

John desperately wants radical young autistics to show him where he needs to push the political envelope! What is he missing?

Alice is giving props to #ActuallyAutistic Greta Thunberg and her lack of f***ks when it comes to doing what is right for the planet and humanity’s future.

She is also out of patience with gatekeepers who are getting in the way of disability and civil rights justice. We need better leaders.

Leroy: we need a change in the status quo! We need to support politicians like @RepMaxineWaters who actually do push back and do the right thing. Even when it hurts.

Micaela to Alice: what does good ally ship/co-conspiratorship look like?

Alice: Acknowledge what you don’t know! Find out more about what ableism is, in terms of everyday experiences and also systemically. Read up. Follow these panelists right here.

  …and provide material support. Show up to events. Buy the books and CDs. Connect with actual disabled people. Immerse yourself. Alice loves the people and the culture in the Disability movement and she thinks you will too.

Leroy: Krip Hop Nation is having a Disabled African Musicians tour in July! Support it.

Over and out! Thanks everyone.


Additional Event Coverage and Links: 

Alice Wong: The Olmstead Decision & Me
The Kelsey: Reflecting on Olmstead Panels