Wednesday, January 15, 2020

Cognitive Dissonance and The "Aspergian" Question

"The genius of apartheid was convincing people who were the overwhelming majority to turn on each other. Apart hate is what it was. You separate people into groups and make them hate one another so you can run them all."
-Trevor Noah
Born A Crime

It is my opinion that the history of the term "Aspergian" is so rife with ableism and eugenicist ideology that nothing may redeem it. I say this knowing that had I been born in the late 1980s or 90s, this term, which is today conflated with the term Aspergers,  might have been added to my own "gifted" label.

My son is considered Black under the one-drop rule.
 He is a diagnosed nonverbal autistic.
Image of a Hispanic male presenting youth  with
curly dark brown hair and tan skin clean-shaven in
a wheelchair drinking a bottle of water Image
posted with permission of the subject.© Kerima Cevik 
In the fall of the past year, I was bombarded with a rage tweetstorm by individuals who felt I was threatening their identity by tweeting my views on the Aspie supremacist nature of the fabricated term 'Aspergian' and for that matter the eugenic past of Asperger himself ("He joined several organizations affiliated with the NSDAP (although not the Nazi party itself,) publicly legitimized race hygiene policies including forced sterilizations and, on several occasions, actively cooperated with the child 'euthanasia' program"). Eventually, I chose to stop trying to justify my position or explain it in any way because I realized that no matter what facts I had to back up my points, what I had to say would never be accepted.

So what I am writing here is for readers who truly want to understand my point of view on the topic of Aspie Supremacy, Aspie Segregationism, the Aspergia Island myth, the error of using the term Aspergian interchangeably with Aspergers and Aspie, and how the language of Aspergian promoters so closely resembles white nationalists post-election attempts to change their lexicon of terms to make white supremacy more acceptable to mainstream audiences that I began to push back against the use of the term Aspergian entirely.

I also need to remind people that this is my perspective, based on how things are right now in the United States, and how much damage and hatred is harming us all by building these disability hierarchies within already marginalized communities.

What made me so sure that explaining the link between eugenics, disability and racism, and how this informed the Asperger supremacist philosophies that gave rise to the Aspergia Island concept and later the conflation of the term for citizens of fictional Aspergia, i.e., Aspergians, would make no difference to those people who identify as Aspergians?  It has to do with how people hang onto desired identities even when presented with any factual evidence to the contrary. An excellent example of this rejection of any identity viewed as less acceptable to society is the story of Susie Guillory Phipps, and how an unknown fact can induce cognitive dissonance that results in serious emotional reactions in people.

Susie Guillory Phipps' Crisis of  Racial Identity

Susie Guillory Phipps and her husband Andy went to request her birth certificate to apply for a U.S. Passport needed to travel to Europe. But when Susie got her birth certificate "she was, as she put it, "flabbergasted and sickened" to learn "the state's Bureau of Vital Statistics had her down as ''colored.'''

''I'm not light,'' she said, pointing to her face. ''I'm white.''  But the State of Louisiana had a surprise for Susie. A genealogical record going back 222 years to a maternal ancestor, a black slave named Margarita. Margarita was the daughter of white planter John Gregoire Guillory and an unknown slave. So Susie's race was not determined by 222 years of white ancestors but by a 1970 Louisiana law that codified the "one-drop rule" meaning if a person had one thirty second percent "negro" blood that made them "colored".

The idea that she had a black ancestor, even in 1982, was such a shock to Susie Phipps that she upended her entire way of life to reject this truth. She believed she was suddenly not accepted in the most privileged caste of her state. She vehemently denied any ancestry that linked her to the caste of least privilege. The cognitive dissonance was too great. In her own words, "sickened" by the idea she could be "colored", Phipps spent over five years and $20,000 demanding in court Louisiana change her race on her birth certificate to "white." Before the one-drop rule applied to her, Susie probably never gave racial identity a thought. But once such a rule directly impacted her class and race privilege she reconciled a fact about her ancestry by rejecting it.

Informed by eugenics, white supremacy remains part of the structure of society in Louisiana and much of the United States. Even now. Mrs. Guillory Phipps's identity crisis and desperate efforts to get her suddenly 'lost' white privilege back demonstrate that individuals faced with a choice between any uncomfortable revelation that places their perceived identity into a lower status and a pleasant myth that allows higher societal privilege they will choose the myth every time. They will passionately defend the myth, and they will abhor the idea of being associated with anything they view as a less privileged or exclusive identity.

I began writing about the harm done at the intersections between racism, eugenics, and autism through the stories of individual autistic youth and children when my son was constantly harmed because of these biases against him. Within the autism community, there are parents, professionals, and adults who segregate and classify autistics by their ability to use verbal speech, their degree of disability, the degree to which their autistic loved ones can mask any outward sign of their disability. or their achievement potential. Some parents weaponize complex support needs nonspeaking autistics like my son to justify usurping the right to dominate discourse about autism resources and public policy, thereby controlling funding and decisions about my son's quality of life that should belong to him. Others use the Asperger's label as both a stick to beat their offspring into what they hope will be a path of being indistinguishable from their typical peers and a way to show superiority over parents of nonspeaking, complex support needs offspring. Then there are those folks whose entire identity hangs on carrying the Asperger's label in the way Susie Phipps needed to have the label "white" rather than "colored" to somehow prove her right to access all the privileges of being in what she considered the upper caste of an apartheid-like social system.

When the American Psychiatric Association updated its fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and renamed the diagnosis Autism Spectrum Disorder (ASD), dropping the sub-diagnoses (Autistic Disorder, Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified, Disintegrative Disorder), all hell broke loose.  Parents who wanted complete control of the autism conversation demanded a "severe autism" subcategory. Parents who wanted their children presented consistent with the "little professor" myth and wished to distance themselves from autistics with ID/DD labels wanted to keep their Aspergers labels. Others wanted more. They wanted to be another degree of distance from the rest of those with the ASD diagnosis. They rushed to embrace the fabricated label "Aspergian."

In 1999, Aspergia Island, an imaginary island state, was created by a group of people who wanted to design a culture in which their genetic differences were a mark of human evolution. They built an online site that tried to establish a full-blown virtual nation, including passports for members, a logo, and an origin myth. The myth of being diasporic refugees from the Aspergia utopia drew a following that filled chat rooms and threads with disturbing rhetoric. They flirted with eugenic based language, the idea that perhaps they, diasporic Aspergians, were the next phase of human evolution. They discussed their own intellectual advantages. While much modifying of the original messaging happened as more information on autism positivity and unity spread online, the underlying message of Aspergian superiority and the emotional need to build an identity of higher status based on the name Aspergian was passionately embraced by those who wished to separate themselves from other autism community members. 

In 2007, John Elder Robison published his memoir Look Me In The Eye. He identified himself as Aspergian, thus doing irreparable harm to the autism community by perpetuating what amounted to a North American rule of hierarchy-of-disability-based hyper/hypodescent to autistic identity. Late diagnosed at 39, Robison spent years dealing with internalized ableism, and this was unfortunately reflected in his writing. Robison's books became bestsellers and expanded the Aspie separatist culture globally. Other famous autistics, most notably Temple Grandin, was justifiably taken to task for making ableist statements against autistic youth with ID/DD labels and complex communication/support needs.  In her book Thinking In Pictures, she says

In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.
 After 2007, the rift between families wanting to distance themselves from those who could not mask autistic traits and those who did not want funding and support given to autistic children and adults who could pass for typical intensified. The resentment of families whose loved ones required lifetime support and services and who could not mask ID/DD labels became toxic online. Wealthy parents wanting to be free of their complex support needs offspring began using their wealth and influence to lobby for institutionalization. They learned to present institutional settings as less toxic places by changing the labels used to describe them, but this continues to be the goal.

The Aspergers label is still used in other parts of the world, and it is an identity that those who own the label are so emotionally invested in that like Susie Guillory Phipps, any idea of replacing it with any label of less status causes such cognitive dissonance that people will react as she did and drop everything else to protect the risk they will lose their perceived identity. Those like me who believe that it is critical to understand that autism as a single label allows everyone to receive every right to needed services and health support throughout their lives will continue to be viewed as threats to this need for holding on to the identity of most privilege.

Parents of those who wish to distance themselves and their offspring from any hint of association with the more marginalized "autism" label continue to demand a return to the Asperger's label in the Diagnostic and Statistical Manual of Mental Disorders (DSM–5). I will continue to state that Aspergian is a harmful term, it should not be conflated with Aspergers or Aspie. I believe that at least here, in the United States, the DSM change that collects all subcategories into a single disability umbrella was the right thing to do.

My son is autistic. There was never any chance, even when the label existed here, that he would be diagnosed with Aspergers. He is one of the folks autistics like Temple Grandin consider collateral damage and that is not acceptable to me. Everyone who insists on demanding I accept the term Asperigian in this community should take a deep dive into the history of the term, why those who use it refuse to accept factual information about the toxicity of it and explore the internalized ableism inherent in perpetuating a term meant to make those like my son less in a hierarchy of disability to feed their own need for an identity of misperceived higher privilege.

One last note. Supporters of a magazine that uses the term "Aspergian" insist that Googling the term proves that the magazine's publisher has succeeded in redeeming it. I disagree with this because of the way Google searches work. What these people are viewing are search results based on their personal search histories and preferences, not what will result when anyone else does the same search.  "According to Google, personalized search gives them the ability to customize search results based on a user's previous 180 days of search history, which is linked to an anonymous cookie in your browser. ... By tracking search results Google attempts to provide the most useful and relevant content based on your search"

Resources and Further Reading
——--------------
https://www.nytimes.com/1982/09/30/us/suit-on-race-recalls-lines-drawn-under-slavery.html
United States v. Bhagat Singh Thind, 261 U.S. 204 (1923)
https://en.wikipedia.org/wiki/United_States_v._Bhagat_Singh_Thind


Wednesday, January 1, 2020

Power, Disability, and The Realities of Consent

Image of Mu, a Hispanic presenting biracial child at age four with short wavy hair wearing a maroon T-shirt, his head
resting on the blue metal rung of the slide he is climbing at one of his favorite playgrounds. Tennis courts can be seen in the background. Image posted with permission of the subject: ©Kerima Cevik 
Over the past decade, I frequently posted the same few photographs of my son on my blogs and social media, and people would occasionally ask why I didn't post more. There are photographs of my son that he likes, and images he does not like. Sometimes I like images he does not. However, I do not have his consent to post the ones he does not like, even if I think my preferences matter. I now ask my children, both the adult and the disabled teen, for permission before I post any photos of them on any public forum. It isn't something I gave enough thought to before the arrival of this age of deep fakes/extreme photo editing/child predators/online stalking/revenge porn/etc, but it is something I am really concerned about now. I spend serious time agonizing over these questions:

Does my nonspeaking autistic son really know what it means that his images are on the Internet forever? Have I been able to successfully explain the Internet enough for him to understand the implications of what that means to him?

This is really important. Where do my parental rights to share my children's photos end and their rights to individual privacy begin? I decided to write about this on the heels of witnessing a parent doing something we parents do a great deal automatically with little regard to the consequences. We proudly display photographs of our kids during the rite of passage events in their lives. And if our kids are autistic, we insist that come hell or high water, they are going to get their rite of passage event photos too, and we are going to splash them all over social media. But should we do this without their consent? And what about their worst moments? Should we record and broadcast those moments for all the world to see?

As my Autistic son is dependent on my care and support, this means I have the power in our relationship. I need to grasp that when I ask a question, he may be afraid I won't like his honest answer. I have to make certain that when I ask my disabled teen son a question, I ensure he is not answering to make me feel better or because he is afraid of giving an answer I won't like.

What are the repercussions if an Autistic teen does not support what their parents are saying or doing? They may lose quality-of-care, affection, support,  even a safe home. They may be institutionalized for being noncompliant. It doesn't take verbal speech for anyone in a position of complete dependence to grasp this. We can't assume that we have their approval or consent unless we have spent years building a trust relationship with them. They must know its okay to say or gesture "no" to you without retaliation.

Autism consultant Carol Greenberg pointed out that even with precautions, what we parents believe is consent may be compromised by a lifetime of compliance training, trauma, and other factors that might keep our autistic loved one from giving an honest response to our requests.

I have seen recent instances of parents putting their reluctant autistic teens through rites of passage events, then broadcasting them in the hope they will become viral. What disturbed me about these events was the storytelling language usage by the parents that left the autistic teen a voiceless prop in their own event, the way the parents allowed coverage of each event without regard to their autistic teens feelings on what content and how much content should be disclosed (one autistic teen's mother bragged about calling boys in her daughter's high school class trying to get one of them to take her to the prom), and the infantilization of the autistic person involved.

And what about autistic people of color who have become public figures after catastrophic harm? While it is important that we know what has happened to them and what is being done to rectify the harm or seek justice, how far can anyone reporting these traumas and their aftereffects go in discussing private health information on public forums without that disabled person's consent?

I've written about Arnaldo Rios-Soto. He was the subject of a podcast, and there was a moment in that podcast episode that some reviewers didn't grasp the need for but for me could be called the pivotal moment of the entire podcast.

It happened during then WNYC reporter Audrey Quinn's interview of disability justice advocate Lydia X.Z. Brown, Esq, on the podcast "Aftereffect." Brown was asked to comment on their view of other's information about Arnaldo's behavior.

Brown responded. "I don't know Arnaldo personally, and I think it's inappropriate to be talking about Arnaldo specifically at his worst moments in such a public forum. Because I wouldn't want someone doing that to me. Don't be a predatory reporter."

When professor Quinn pressed on about third-hand information regarding Arnaldo's behavioral history, Brown answered: "Is that something that Arnaldo has given you permission to talk about publicly? Because that's a really important question."

This was a clear reference to Arnaldo's right to give or deny consent. Gaining Arnaldo's consent was something Quinn agonized about doing. I wondered why an attempt wasn't made with the support of a Speech pathologist, using the methods of communication already familiar to Arnaldo, for example,  by presenting him with a very brief, illustrative YouTube video in Spanish. What many journalists reviewing the podcast didn't understand was how groundbreaking an interview that emphasized the need to gain the consent of a disabled involuntary public figure to share private information about their behavioral health during moments of complex post-traumatic stress was.

So let's think about why I'm saying this. Disability justice advocate Brown demanded Arnaldo's behavioral health history not be debated or discussed with strangers in a public forum without his consent. They reminded Quinn that people who have survived trauma will react to trauma (that is what post-traumatic stress disorder literally means) and that such reactions should not be fuel for victim-blaming or mislabeling survivors. They also reminded Quinn that disabled people are people, and like all people, disabled people can be violent, abusive, terrible or compliant, kind, and passive.

Chanel Miller's identity was protected during the trial of her attacker. She made a decision to disclose her identity and gain control of the narrative about her experience as the victim of a violent crime. Arnaldo, I realized, was never given that privilege, something that regardless of his degree of disability and CPTSD, he should have had the right to do.

Sometimes people end up memes or subjects of viral social media content and lose agency over a moment in their lives forever. For our offspring, who are forced to live in social structures built to deny them any agency in their own lives, it is up to us to do whatever we must to ensure we truly have their consent to present them in public forums.

In lieu of general comments, I hope to hear recommendations on how parents can facilitate their offspring's right to give consent even when that person is a nonspeaking autistic youth or adult, and how to support ID/DD children so they gain the confidence to give or deny consent. This also needs to be a discussion on how to help parents reduce fear so they learn to respect a denial of consent from their disabled children.

Peace.

Monday, December 23, 2019

#AutisticWhileBlack: Seventeen

Image of a tall, multiracial Latinx presenting male with black cropped
hair, a thin mustache, wearing teal and blue striped polo shirt and
black slacks. He is holding an iPad AAC device in his hand. Image
posted with permission of the subject. Credit and Copyright Kerima
Cevik.
Our son is seventeen. He used to enter the month of December gravely ill every year, but we managed to overcome that for so long that this year when he became ill again, it was a shock. The shock reminded me that my nearly completely grown-up son, with his ancestors' looks and a mustache that is the envy of his teen peers, is still very much disabled.

My son was born in the nation's capital, during the worst snowstorm the DMV had seen in years. We had to try and reach the hospital in a taxi that volunteered to take us when the ambulance, trapped in the snow, could not go further. Everything about his life has been no less dramatic.

 We first met an idealistic nutritionist on the grueling December when he was given the gift of diagnoses. Grueling because the diagnoses were so grim they required we get repeated followup appointments at the Kennedy Krieger Institute to confirm the fears of the pediatric neurologist. Gift, because to define one's disabilities means to understand them. Some can never put a label, prognosis, or plan to theirs.

Our idealistic nutritionist was in her first month on the job, and as she read our son's chart and smiled at him and us, she gently asked if we could afford organic food for him. She was positive, encouraging. Kind. So it was a shock to believe that when we followed up with her after she became the head of her team and our son was not quite twelve, years of working with nonspeaking autistic youth had turned her into another person. She was rude, short, bitter. "I'm a department head, you need to follow up with someone else." "He's entering puberty. I suggest you get a lock for your refrigerator and hide the kitchen knives." The look of anger and horror on our faces was so apparent, and my husband's sharp angry retort was so loud in the suddenly silent room that she seemed to wake from a jaded dream. She immediately apologized. "Of course I didn't mean to imply your son was violent." Our son was right there. She said these things and he was looking right at her! Why did my husband have to remind her of that? What had happened to this woman after a decade of supposedly providing nutritional services for nonspeaking autistic children?

Our son is seventeen. We have neither considered nor had the need to bolt the refrigerator. Our knives are not locked away. His absolute favorite thing is baking, and he loves cooking and food culture in general. He has grown into a happy, loving young man. The nutritionist, like so many other professionals who were supposed to be there to help our son but came with attitudes that prejudiced the quality of care he received, were wrong.

He progressed when they said he could not. He overcame when they refused him the AAC equipment he needed to communicate and the supports he needed to succeed in a traditional classroom. They failed him. And after years of trying to fight for him, I felt like a failure each time I saw other nonspeaking autistic children gaining resources I never knew existed. Until I realized that what made him different was me. All those children, all of them, were not the children of Black women.

It was an awful moment when this all hit me. My son was having a dermatitis followup and his father was able to take time out from work to come with me to his pediatric clinic. The doctor who had seen him when my daughter and I brought him initially had been rude, dismissive, victim-blaming. When he saw my husband and son he seemed not to recognize me. He was polite, kind, caring. He rechecked his initial findings. He checked our son's bloodwork and gave us a private exam room while doing so. My daughter and I were livid by the end of the visit. It turns out he believed my husband was embassy personnel. When I was just a Black woman with Hispanic looking offspring, my disabled son was a waste of his time and training. That made me realize that my son pays the Black tax for racism directed at me the way bartenders paid the health cost for second-hand smoke.

We realized that we could not overcome disparities in professional services biased by systemic racism. Our son's additional burden of having to overcome the obstacles placed in his path by systemic ableism because he is not an autistic who has verbal speech and he also carries and ID/DD label was so unfair it nearly crushed me. But I am very lucky. I have Mu for a son.

Mustafa is an incredibly kind, loving, sweet son. So much so that I cannot remain depressed about our chances of surviving in a world where so much disparity and hatred is directed at us. He hugs us and engages us and plays endless sweet, harmless pranks on me. He seems to know when I feel defeated and always comes and sits awhile with me, trying to cheer me up. He is the most hopeful person I've known. It makes me keep going.

We worried about his weight because we were lectured endlessly about the problems he would have. He was born heavier than his premie peers. But he has, for the most part, learned to control his own eating. We were told he just was incapable of so much. All untrue. It makes me wonder how many families were literally shoved into clinically depressive states by well-intentioned professionals trying to be "realistic" about other people's disabled children.

What I wish for as we enter this new decade is for someone to look at my son and say he will be alright. Not that he'll survive, but that he will thrive. He deserves to thrive as much as any other nonspeaking autistic transitioning teen. Further, he deserves the chance to thrive as much as anyone his age. I haven't given up hope that I will live to see that happen.

Sunday, December 15, 2019

#SaveArnaldo : How Much Is Lifelong CPTSD Worth?

Image of Arnaldo Rios Soto, a nonspeaking
Latinx autistic young man in a gray hoodie
with crew-cut brown hair and a clean-shaven face
smiling broadly for the camera. Credit
Matthew Dietz, Esq.
If your child's school staff,  then his residential care home staff,  harm your autistic child and one terrible day, you get a call that the behavioral aide your child finally connects with has been shot and your grown child, having survived so much, was shot at while sitting in the street holding his toy truck, handcuffed, interrogated, institutionalized, and now has permanent complex PTSD caused by the mishandling of a catastrophic encounter with law enforcement, can you think of a price tag that with make it all go away?

That final traumatic event, the moment Arnaldo Ríos Soto screams out in his frequent nightmares in the single word utterance "POLICE", cannot be fixed or undone. Any parent of an autistic young adult would hold those responsible to account for the lifelong care he needs. The state of Florida is accountable for Arnaldo's lifelong, 24/7 care and support. This should not even be in question.

So why then was the cost for his lifelong care cut? Lifelong damage was done. Irreparable damage. The kind of trauma Arnaldo experienced cannot be undone. Put simply it is the obligation of those who caused this trauma to care for him. 

Arnaldo was evicted from his home because the state cut the funding needed for his care in half. He was evicted after a contract was signed saying his care facility would continue his care despite the funding shortfall. His former care home should lose their license.

I have been steadily updating on Arnaldo's situation because but for the grace of God Arnaldo could be my son.

I wrote an essay on the eve of Arnaldo's eviction that was published in Poor Magazine, but still, no one seemed to give a damn. So I'm reposting it here. Let's hope someone out there listens this time.


Arnaldo Rios Soto, Autistic, nonspeaking, and Latinx, was evicted from his current group home.  

His ongoing crisis brought back a personal memory. 

When I was in my teens, I worked summers as part of the Youth Conservation Corps. One of our projects was assisting efforts to reclaim the Palso strip mine. A group of us were standing with our supervising forest ranger on the top of a mountain of slag looking at miles of blasted fields and ponds filled with acid runoff when suddenly the rubble beneath us shifted and three of us tumbled downward with the landslide. The other two managed to stop and scurry back up. But each time I moved, the mountain seemed to respond by raining more debris around and over me. It was an avalanche. I was sure I was going to die that day.

If we were to create a timeline of each pivotal event in Arnaldo Rios Soto’s life, I believe those traumatic moments would morph into a rubble mountain of suffering and trauma. Arnaldo has now seen the ground shift beneath him one too many times. An avalanche is happening, and Arnaldo, like me the day I hung suspended on a slag mountain, is scraped, bruised, too young to die. The detritus of a failed disability care system falling like rubble all around him, he has now been evicted from another group home on the excuse that money was cut from his care budget.

Arnaldo’s life is measured by how much profit he makes for those who offer services to house and care for him. His family’s lives have been punctuated by seeking the land of autism care Oz, that place where Arnaldo won’t be beaten, chemically lobotomized, where someone, anyone, can truly see him as a human being and not a collection of behavioral reports, untreated complex PTSD and medications. They are tired, burnt out with disappointment in that shattered dream of an American mainland utopian disability care system they sacrificed and journeyed from Puerto Rico for in vain.

What will happen to Arnaldo now?

What happens to Arnaldo now is up to all of us. We are his family now. He is in our care. So we need to understand how and why Arnaldo matters. Arnaldo’s situation is greater than his news headlines. His situation right now is bigger than my personal emotional reaction, informed by the fact that he once looked so much like our son that both my husband and I cried out in shock when we saw that video of him sitting in the middle of the street, holding his toy truck, police shouting and Charles Kinsey shot and bleeding beside him.

 It is greater now than Arnaldo not understanding that he was about to tumble down that cruel mountain of police interrogation for the crime of sitting in the street holding a toy truck while disabled and brown. Arnaldo is now the symbol of what it means to be a nonspeaking autistic male of color at the mercy of a system that views the Black and Brown disabled body as a threat. This system, founded on eugenic attitudes, views those with complex support needs as burdens or cash cows. When the profit margin is not enough the cash cow is sent to the slaughterhouse. For someone like Arnaldo, who was harmed by agents of the state, leaving him without shelter and the complex support he needs is tantamount to destroying his psyche entirely. And returning him to a hellhole institutional setting like Carlton Arms is unthinkable and unacceptable.

What that means is that what happens to Arnaldo now has the potential to impact how future cases like his are handled across our country. If we can act together and change his destiny it will demonstrate that our community has the power to transform the destinies of others brought low by this system. It means that the lifetime efforts of hundreds of disability justice activists have managed to change something. We need this hope because we multiply marginalized people have become the targets of hate groups instigated by those who feel that the current administration has given them a free license to hunt those who are oppressed and vulnerable. So what I am doing right now, typing, wheezing with asthma, pushing past joints that ache to write this is reaching out to say this is the time when all of us, ALL OF US can help Arnaldo. #SaveArnaldo can trend on every social media platform enough to make those who made the decision to cut funding for Arnaldo’s care rethink their decision. Organizations can support the AutisticSelf Advocacy Networks leadership and issue statements in support of the Sotos family. Legislative advocates can reach out to their lawmakers. This takes a few moments, a click, a retweet. But multiplied exponentially, collective cross-disability community action could be an avalanche that forces a positive resolution to Arnaldo’s crisis.

As I was sliding down a mountain of slag towards my death, two other people volunteered to lay flat, one grabbing the ankles of the other, and acted as a human rope. Five others held on to the arms of the person laying flat on the top of that mountain for dear life. Then they all heaved up and backward.

Together, they saved my life.

I am asking you all to make a human and virtual chain. Get him off that sliding bureaucratic slag mountain and back into a place where his family can see him every day and he can be safe and cared for. #SaveArnaldo.

Peace.

Poor Magazine Lays out My position on catastrophic encounters with Law Enforcement:

Read and hear more about Arnaldo:
Miami Herald coverage of Arnaldo's eviction CN: for Ableism

Aftereffect: Against the Erasure of Arnaldo Rios Soto

Aftereffect: A SWAT team, an autistic man, an American tragedy.

Podcast: Aftereffect — an indictment of America’s disability care

On catastrophic encounters between disabled youth and men of color with law enforcement specific to Arnaldo’s case:


Wednesday, September 11, 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 https://www.deejmovie.com/press


"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 the conclusion 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 appTouchChat 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—outside of stereotyping in media for us people of color—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 this topic? 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 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 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 tenure 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 plowed 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 discuss the reality that this brief used 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 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 current 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 statement,: "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 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.

-----------------------------------


Nickerson, Raymond S. (June 1998), "Confirmation bias: A ubiquitous phenomenon in many guises", Review of General Psychology, 2 (2): 175–220


Foster CA. Deej-a Vu: Documentary revisits facilitated communication pseudoscience.


Behavioral Interventions. 2019;1–10 https://onlinelibrary.wiley.com/doi/abs/10.1002/bin.1687


Foster, CA. Skepticism at heart is not partisan. Skeptical Inquirer 2017


https://skepticalinquirer.org/2017/01/skepticism_at_heart_is_not_partisan/


Hagiwara, N., Slatcher, R. B., Eggly, S., & Penner, L. A. (2017). Physician Racial Bias and Word Use during Racially Discordant Medical Interactions. Health communication,


32(4), 401–408. doi:10.1080/10410236.2016.1138389


Confirmation Bias


https://en.wikipedia.org/wiki/Confirmation_bias


Kupferstein, Henny (January 2018) “Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis” Advances in Autism ISSN: 2056-3868


https://www.emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html


UN calls for investigation of US school's shock treatments of autistic children


https://www.theguardian.com/society/2012/jun/02/un-investigation-shock-treatments-autism


School Shocks Students With Disabilities. The FDA Moves To Ban The Practice.


https://www.npr.org/2019/01/23/687636057/massachusetts-school-defends-use-of-electric-shock-treatments


The Legacy of the Civil Rights Act of 1964


https://www.history.com/topics/black-history/civil-rights-act#section_4


Bruno Bettleheim, The Empty Fortress


https://archive.org/details/emptyfortressinf00bett_0


Leo Kanner's infamous 1947 Time Magazine interview that began Bettelheim's destruction of autistic children and their mothers with quotes like "The children, says Dr. Kanner, were "kept neatly in a refrigerator which didn't defrost."


http://content.time.com/time/subscriber/article/0,33009,798484,00.html


Siegel, B. (1995). Brief report: Assessing allegations of sexual molestation made through facilitated communication. Journal of Autism and Developmental Disorders, 25(3), 319–326. doi: 10.1007/bf02179293
Hansson, S. O. (2013). Defining pseudoscience and science. In M. Pigliucci, & M. Boudry (Eds.), Philosophy of pseudoscience: Reconsidering the demarcation problem (pp. 61–77). Chicago, IL: University of Chicago Press. https://doi.org/10.7208/chicago/9780226051826.003.0005

Sunday, July 28, 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.
"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 nondisabled 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 offputting. 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 nondisabled 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.

Peace

Monday, February 25, 2019

AfterEffect: Against The Erasure of Arnaldo Rios Soto

Arnaldo Rios Soto, a Latinx male presenting autistic man with dark curly hair
wearing a gray t-shirt is holding a brown and tan teddy bear and smiling at the
camera.
Today, the police officer who shot Charles Kinsey goes on trial. I read a news report describing how Mr. Kinsey has not recovered from the trauma of being an unarmed Black man doing his job and trying to tend to his client and explain to the police that he and his client were unarmed and trying to cooperate. The police officer claimed he was not trying to shoot Mr. Kinsey. He wanted to shoot his autistic client, Arnaldo Rios Soto instead.

It is important to note that police radio notified officers that Arnaldo was holding a toy, and officers 20 feet away did not feel under threat. Quoting Mr. Rios Soto's attorney, Matthew Dietz, in the Miami Herald:

 “I can’t believe that every other officer heard on the radio that it was a toy,” Dietz said. Aledda “aimed, but couldn’t hit a 250-pound man sitting cross-legged on the ground, and he’s a SWAT member? If he was aiming at Arnaldo, he’s the worst shot in the world.”

Arnaldo was a passing mention in the story of the aftermath of this tragedy. In fact, the story of what happens to Arnaldo is told in heartbreaking detail on the podcast Aftereffect, which you can listen to by clicking this link: https://www.wnycstudios.org/shows/aftereffect

There were two victims of color that day, Mr. Kinsey and Arnaldo Soto. One was an African American carer, the other was his Latinx and autistic client. There shouldn't be a hierarchy of victims that makes the victim struck by the bullet intended for the other the main protagonist in this horror story. I find it sad but not surprising that this news article uses the power of words to leave Arnaldo a voiceless footnote in his own tragedy.

Arnaldo has paid a devastating price for wanting to take a walk away from his group home. He was targeted because he was autistic and wandering in the street on a route usually taken with Mr. Kinsey, clutching his toy truck.  Arnaldo was unjustly arrested, he was placed in the mental health equivalent of hell for too long. Despite his story having a happy ending of sorts (I mean, he's still in a group home), the memories of that day will haunt Arnaldo for the rest of his life, just as they haunt Charles Kinsey.

I think we need to remind the media that today, the police officer who alleged he aimed to shoot Arnaldo Rios Soto, an autistic young man of color, missed and shot his support staff member, Mr. Charles Kinsey, instead.

Read more about Arnaldo, Autism, and catastrophic encounters with law enforcement:

https://www.wnycstudios.org/shows/aftereffect
The low key ableist news article:
 https://www.local10.com/news/local-10-investigates/charles-kinsey-still-haunted-by-memories-of-police-involved-shooting
Other references
https://www.miamiherald.com/news/local/crime/article226624549.html
http://theautismwars.blogspot.com/2016/08/mustafas-dilemma.html
http://nosmag.org/arnaldo-rios-autistic-man-charles-kinsey-police-shooting/