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/




Wednesday, October 10, 2018

#AutisticWhileBlack #SaveDarius Criminal Justice in Black and White

Darius McCollum image of an older African American Male
with a short full beard. A blurred rail car behind him.
He is wearing a black ski cap, black coat with a dark blue
zipped up inner lining. Image credit Adam Irving

“But all our phrasing—race relations, racial chasm, racial justice, racial profiling, white privilege, even white supremacy—serves to obscure that racism is a visceral experience, that it dislodges brains, blocks airways, rips muscle, extracts organs, cracks bones, breaks teeth. You must never look away from this. You must always remember that the sociology, the history, the economics, the graphs, the charts, the regressions all land, with great violence, upon the body.”― Ta-Nehisi Coates, Between the World and Me

Darius McCollum memorized the MTA map by age eight, spent his entire adult life volunteering for the MTA, and was criminalized and jailed for it. He was given a diagnosis of Asperger's by a prison doctor at age 40. He has all the characteristics of a prodigious savant. But we will never know, because, at age 53, he has been given the final blow to the crime of being autistic while black, damned to an institution where he, who is not violent, does not belong.

I would like to live in the dream that had Darius McCollum been born in say, 1992, he might have been diagnosed with Asperger's syndrome while still in grade school. Perhaps, if he hadn't lived years before people acknowledged or accepted that Black children could be autistic too he would have made the evening news for volunteering at the MTA while still a young autistic child. Perhaps he would have been rewarded for his intense interest in the transit system and earned a training internship with accommodation for his disability. Perhaps he might have transitioned into a job as a disabled adult. Perhaps when the MTA rejected his repeated applications for work, he might have found legal representation and sued for discrimination based on disability. Maybe, in a parallel universe, Darius McCollum is living a happy life doing the only thing he has ever wanted to do, work as an MTA employee.

Perhaps he would not have felt the urge to drive a bus six stops on its route, flawlessly picking up and dropping off passengers as any driver would do, at age 15.

But I know that Ta-Nehisi Coates is right. I always wake up from these reveries feeling gut- punched in the truth that everything lands with great violence upon the black body.

Darius has the world's thirst for entertainment and the media's lust for ratings against him. News stories about Darius are less like human interest reporting and more like circus creations at a world's fair where he's the oddity du jour and his suffering saga is a marriage of stereotypes, Jim Crow minstrel shows of a disabled black body. How can we expect justice when the structural racism of government overreaction to any nonconforming Black male body stands like a mountain in every Neili, Arnaldo, and Darius' path?

At age 53,  the doom of this verdict is the final hammer blow to this singular mind. It is too much like the way the widow of Blind Tom Wiggins' slaveholder tricked his mother into signing over custody of him with the promise of freeing him then used of the courts to declare him mentally incompetent simply to enrich herself. Tom Wiggins is known as the last slave in America because of this abuse.

I haven't studied all the publicly available charges piled up against him. But from what I have read, they are marked by McCollum following proper procedure as he did while volunteering. He gets "caught" because this is not behavior he has the impulse control to eradicate on his own. When he was in another state, I wondered why it was not okay to give him a small bus, a supervised rural bus route, and allow him to spend the remainder of his days driving it. He has been labeled a thief and given a devastating punishment for compulsive behavior. Meanwhile, he has become the subject of a movie, and others will profit from his suffering.

What do I mean when I claim that Darius is caught in the sinkhole of racist ableism?

Sometimes it is easier to see the reality of this when side by side comparisons happen. So let's look at turning points in the lives of two teenagers with the same diagnosis of Aspergers.

 Blogger Brobrubel summarizes criminal justice and government overreach by reminding us of what justice looked like for Jack Robison, and Neili Latson both were teens with a diagnosis of Asperger's  Despite the use of an ableist definition of autism, Brobrubel shows the disparity in our criminal justice clearly.
Here is his 2011 essay, Autism in black and white.

Please read it and try and understand the reality of being Autistic While Black in America.Then share this, and remember that we who are African American are the first to feel this weight of violence but we are not the last. Injustice expands like a balloon if those who believe they are protected from it ignore it.
Peace.

"The Web site Liquor & Spice caught this in the New York Times this weekend involving a 19-year-old kid named Jack Robison in Massachusetts with Asperger’s syndrome, a form of autism:
" A chemistry whiz, he had spent much of his adolescence teaching himself to make explosives and setting them off in the woods in experiments that he hoped would earn him a patent but that instead led the state police and the Bureau of Alcohol, Tobacco, Firearms and Explosives to charge him with several counts of malicious explosion."
" By the following spring, he would be cleared of all the charges and recruited by the director of the undergraduate chemistry program at the University of Massachusetts, who was impressed by a newspaper account of Jack’s home-built laboratory."
" And then caught this information involving a case in Virginia".
"Reginald “Neli” Latson, is a 19 year-old autistic young man, who on the morning of May 24, 2010, sat in the grass outside the local library in Stafford, Va., and waited for it to open. Police allege that it was reported that there was a suspicious black male who had a gun. Deputy Calverley then approached Latson and searched him for a gun. No gun was found. Calverly asked Latson for his name, and Latson refused and tried to walk away as he had committed no crime. Calverly then grabbed Latson and attempted to arrest him without reading him his Miranda Rights or calling for backup.
After a 3-day trial, Latson was found guilty of assaulting a law enforcement officer, among other charges, and 10 1/2 years in prison was recommended. Latson’s defense centered around the fact that he has Asperger’s syndrome, part of the autism spectrum, ...  "
" Massachusetts didn’t see a crime in making explosives at home. Virginia saw a crime in waiting to go to the library. Robison was blowing things up. Latson was waiting for the library to open. Robison is rewarded. Latson is going to jail."
" "Robison is white. Latson is black." 
"We don’t want to admit it, but race does matter."

Friday, August 31, 2018

#AutisticWhileBlack: Against The Miseducation of M. Cevik

“When told we could not be educated, we went out in the woods, we dug a pit, and when somebody learned to read, they’d sneak out at night, go down in that pit with a light, and teach [others] how to read, because it was that important.” Today, for black home educators, “it’s still that ‘each one, reach one’” mentality, she explained. “It looks different, but it harkens back to who we are, who we have been in our educational history.”


Cheryl Fields-Smith
Associate Professor of Educational Studies
University of Georgia 
I watched social media bloom with the photos of other people's disabled children ready for their first day of school. From the parents of twice-exceptional autistic offspring to those who have what they feel is a great school or outstanding teaching team for their nonspeaking children, the parade of photos with running commentary from proud parents was a conundrum for me. I was happy for all of those families but I understood they had no grasp of how that display of pride, that lack of understanding of privilege would feel to parents who didn't have the advocacy or means or demographics to send their disabled students off without trepidation. Children and young adults were photographed and ushered off, everyone secure in their right to be safe and educated. I sometimes wonder what that sense of entitlement must feel like.

I am the Black home educator of my high support needs autistic son. This path to educating him was neither planned nor expected to succeed. I have my son to thank that so far, it has.

Electric Light and Switch built by Mustafa Cevik,  Image of a
snap circuit DIY project to build a light and switch completed
in the foreground. In the background, an instruction book with a
diagram of the project and written instructions can be seen.
Our enormous push against the miseducation of Mu is the latest episode in the history of how the Black and Brown branches of our family tree struggled to gain literacy and numeracy. As I am typing this, countless other people fight for the right to be literate in America, while countless others give no thought at all to having that right, because for their loved ones it is never denied.

Education is something our elders risked their lives for. I carried that weight when I joined the first generation of African American children to attend public schools after Brown v Board of Education of Topeka.

I was a girl brought back to her stepfather's hometown and forced into the nearest school in a neighborhood where we were the only African American family.  My older sister, younger brother and I integrated a rural, all-white school mostly filled with the offspring of farmers.
 One of the many moments in that history, during my early teen years,  happened when I sat watching the tiny black and white portable television my stepfather had built for us to watch in our rooms. The news showed mobs of white adults from Boston throwing bricks and whatever else they could find at buses full of students like me.

It was a sobering moment. All those people who might feel justified in lynching us for the skin we were in, feeling they were losing something by our gaining the same constitutional right to a public education they enjoyed.

Our first homeschool field trip was to beautiful Art Deco
Greenbelt. Mu is in a yellow winter coat, his college student
big sister is wearing a green AmVets jacket. They are facing
Greenbelt's mother and child statue. Image by Kerima Cevik
Then there was the moment my grandmother sat me down to have a serious talk about my honor roll winning grades. My grandmother told me she was proud of me, but I was to settle for lower grades. She emphasized to me that my life depended on not being significantly better than the white students. It was devastating to be told to pretend to be less intelligent than my white peers so as not to put myself at risk of bodily harm.

Public school for me and my peers was unjust and sometimes dangerous. Forty years later, the reality for many Black and Brown disabled students like my son seems to be equally unjust and at least as dangerous.

Our family learned the hard way that the reality of a Free Appropriate  Public Education (FAPE) equal to nondisabled peers, like the reality of an equal, and nonsegregated education, didn't live up to the promise of either the Individuals with Disabilities Education Act (IDEA) or Brown v Board of Ed.

 We had to argue for our son's right to FAPE. We fought to ensure his safety while he was trapped in school placements where IEP teams strove to gaslight us into believing that our son could not be educated, therefore services and supports for him weren't worth the school budget.

An image of a page from Mu's 3D textbook,
The Human Body by Miller and Pelham
displaying a 3D popup image cross-section
of the human heart. 
I have been homeschooling my nonspeaking high support needs autistic son since a series of abuses in school escalated to a point where his school principal called to say that while she was off campus at a scheduled meeting the staff had "lost" him. That day we nearly lost our son for good. The reality of public educational life for my son despite the protections that IDEA was meant to provide him left us horrified. We realized they had no real intention of educating him and his life would remain in jeopardy as long as we stayed in that county's school district.

We knew our son's degree of disability. We presumed our son was competent. We believed all children could be taught. We wanted him to be educated.

 We have been home educating for nine years. He's a teenager now.

This is the hardest thing I have ever attempted in my life.

In his first year of homeschooling, our daughter helped me find a certified Montessori special education teacher who recommended a special education curriculum and resources for building him a Montessori environment at home.   My husband began to buy equipment, school supplies, hardware, and software and acted as Mu's physical ed aide and Mu's sister became his homeschool paraprofessional while continuing her college education.

 We dove into his education passionately, perhaps against their miseducation of Mu and the harm done him by people who were supposed to protect and educate him.

Tyrannosaurus Rex's head bursts out of Mu's textbook
on Dinosaurs. These beautiful books combine stunning visuals
with information that is appropriate for all ages.
I was incredibly fortunate. Mu's big sister decided to get her masters in special education and make her specialization multiple and high support need disabilities. She and I now build curriculum and instruction to fit his individual needs as he grows up and she follows through to see how he is progressing. This kind of individualized education planning and life skills consulting would be unaffordable otherwise. Both my daughter and my husband have introduced all manner of tools and texts to enrich his learning environment. This has helped Mu relax and overcome a great deal of his hesitation for learning.

  I learned that home educating was different from any classroom teaching I'd done. It takes an extreme degree of dedication and patience from both teacher and pupil. You must adapt and accommodate for your pupil's disabilities.

You give up your rights to just being a parent several hours a day, seven days a week. You have to measure progress and sometimes begin again. You cannot give up. Your child is depending on you. What that means some days is both of you taking things one breath at a time. This is our narrative. No advice, no judgments, just knowing that we must synchronize the ebb and flow of facilitating and absorbing learning without preconditions or forcible compliance. We reached this moment one breath at a time.

 Some parents are great at getting their children what they need within this broken system. Others are great at supplementing where the system fails. For Black and Brown parents choices may seem limited, but in the age of technology, enrichment exists if we know where to look for it. I have had a very singular life, and part of it gave me an odd collection of skills that helped me help my son. Most importantly, Mu wants to communicate. He wants to learn. So he puts forth the effort and I don't push him to some point of frustration.

Homeschool Adaptive P.E.,: Musti with his Dad in the pool,
 learning to float Image of a Brown young man with curly
brown hair floating in a swimming pool supported by his father,
a  white male with dark hair whose back is to the camera.
@ Kerima Cevik
There are activists out there fighting to preserve our children's right to FAPE in safer, nonsegregated public school settings. We believe in the work of those activists but found ourselves making the choice an increasing number of parents of Black and Brown children are making when public school districts fail their children. We were pushed to dig an educational pit, light a candle, go into that pit with our child, and teach our son what we know. What we have gained from being at home is understanding our son without barriers. We wake up knowing our son is safe; a happy and stubborn scholar who has regained his curiosity and zest for exploring and learning again.

Mu has taught me how to interact with him, and how to understand how he communicates. I have learned to help facilitate his learning rather than make his learning a series of demands with rewards for compliance and deprivation for shows of frustration and errors. When we see how this process empowers him, my fatigue dissolves, my regrets fade, I focus on my son, and I press on. Regardless of what the future holds, these years with my youngest child have been precious, no first day of school photoshoots or bragging rights required.

Time to light my candle and get back in that pit. Peace.

--------------------------------------
Further Reading:
Resisting the Status Quo: The Narratives of Black Homeschoolers in Metro-Atlanta and Metro-DC
Surviving Inclusion: At The Intersection of Minority, Disability, and Resegregation

Tuesday, July 24, 2018

#AutisticWhileBlack: Diezel Braxton And Becoming Indistinguishable From One's Peers


The author's idea of what supporting autism positivity looks like:
Image of a Black woman over 50 with braided gray hair wearing
a Neurodiversity 3.0 by ThinkGeek, a black T-shirt with a world globe
design on the upper chest area in the shape of a human brain,
colored in physical map fashion i.e., water is colored light blue
and land masses green, clouds white, looking to her left
over bent wire-rimmed glasses in that way that mothers look at
their children when an outrageous behavior has just ensued

There is an article in a paper called The Daily Net, about singer 
Toni Braxton's 16-year-old son Diezel working as a professional model for the past two years. The article refers to him as "formerly autistic." It goes on to say he has, "fortunately, moved past" autism and is now a celebrity himself.

Apparently, when her son was 13 Ms. Braxton was told he no longer met the criteria for autism. According to this article, she goes on to say:



“I am one of the lucky parents. Early diagnosis changes everything. I will tell you this. I will shout it from the rooftops. My son Diezel is off the spectrum. Off the spectrum being autistic.”

I beg to differ. There is no cure for autism. 

This is a neurological divergence that doesn't just go away. One doesn't "move past" the wiring of a brain that has obvious neurological and physical differences. Calling current interventions for autism treatments is a misnomer that confuses parents.  These interventions do not cure autism. They suppress visible signs of neurodivergent minds forcing a type of behavioral code-switching that allows an autistic person to appear to navigate the world around them such that they blend in with nonautistic peers. 

This is not a cure. The price paid when forced training in compliance and the suppression of coping mechanisms is pursued instead of investigating and addressing the root causes of coping mechanisms and misunderstood behaviors may later manifest  in "formerly autistic" adults as mental health challenges and PTSD. 

A parental declaration tantamount to a demand that Diezel should not display any sign that he is autistic has been issued for public consumption from a mother who has no understanding of being autistic except to view her son's brain as an enemy he must fight and defeat. Is telling your adult son to hate his own brain and how it works a good thing? This sounds more like the very definition of how internalized ableism happens. 
Toni Braxton would not tell her son that his melanin and hair are abhorrent things that he must combat and chemically suppress so he can be "indistinguishable from his white peers." I wonder why its okay to tell him to hate the nature of his own neurology? Most of the innovations, discoveries, and creative artistry in this world came from neurodivergent minds. Nina Simone was bipolar, as were many other great musicians. Many creative people are autistic.

 Presumption of a cure because the symptoms of a divergent mind are no longer apparent deprives neurodivergent individuals of their future rights to critical mental health and other supports they may need to access going forward. 

It is truly harmful to hold up an autistic teen and call him formerly autistic. If he has trauma, anxiety, or any future issues, his own mother's insistence that his lifelong disability is gone might lead him to hesitate in seeking help, to feel inadequate, to feel unable to request critical accommodations and supports that might significantly improve the quality of his life or save it. 

He is the son of a celebrity so his life at this moment might appear significantly better than his African American peers. But this path of using an incorrect term for his becoming indistinguishable from his peers is dangerous to our community and wrong.

This type of rhetoric, along with parading her teen son around as inspiration porn could have other parents exerting increased pressure on their own offspring to be "formerly autistic" and if those young people have a degree of disability that makes becoming indistinguishable from their peers unrealistic it could irrevocably harm them. 

The author's idea of an autism positive autistic male
model. With permission from Mu, and yes,
we have matching Neurodiversity 3.0 t-shirts.
He is wearing his, bought deliberately large
because the collar would disturb him otherwise.
The photo matters because it defies professional
assessments of his degree of disability.
He is facing me while I'm photographing him,
he's looking right at me, and he's sending a
kiss in my direction. Image of
a multiracial teen with curly hair
at a table in a black t-shirt with a
drawing of a human brain
colored to look like a physical map of the world
with the word Neurodiversity in all caps
and green lettering beneath it.
A refrigerator can be seen in the background as
can parts of a sitting room behind him. © Kerima Cevik  

The crushing element of structural ableism which breeds internalized ableism when nurtured by this type of parental gaslighting may have emotional consequences at a later time in Diezel's life and that truly concerns me.  His mother clearly hates the autism label and views autism in the same way she views the Lupus diagnosis she carries. I wonder how this has informed his identity and his sense of self-worth? I wonder if Diezel has been assessed for conditions like prosopagnosia, synesthesia or auditory processing disorders? Has he been tested for EDS?  These are parts of the autism label that are rarely tested for or addressed in African American autistic populations. 

As African Americans, we are forced to code switch, to suppress African American Vernacular English and cultural differences that make us who we are, unless those differences in language and manner have already been culturally appropriated. Ebonics is still deliberately treated as either entertainment or something less than acceptable. It is still a major issue when natural hair is worn to school or work. It is still a risk when AAVE is used in traditional work settings or public spaces. The suppression of Black identity that necessitates code-switching to gain employment perpetuates structural racism. This type of racism has been exposed, deconstructed, and understood to be harmful. We now insist on being ourselves and this has direct positive effects on the acceptance of our own Black identities. This reduces internalized racism and has created an entirely new generation of young Black activists who are able to continue to fight for the basic human rights we deserve as African Americans.

Toni Braxton's celebrity and her wrongheaded understanding of autism have been used for years to muddle the African American community's attitudes about autism. She allowed herself to be used to present autistic brains as things to be eradicated and this is unacceptable. Her attitude sets up a dangerous mentality that is unsustainable, as you cannot eradicate your child's brain.

She has been vocal and public in her portrayal of autism as a disease to be suppressed and defeated rather than as a lifelong disability and this has had a devastating impact on how our people view their own autistic children. We have a disproportionate number of autistic high school graduates who could succeed in college with the understanding that supports exist to help them navigate university life on every college campus. Our community views autism as a mark of shame, an embarrassment, and celebrity parents like Ms. Braxton continue to be instrumental in perpetuating these attitudes of ableism that hold multitudes of autistic youth back when her intention appears to be to give our people some sort of hope and inspiration. 

It is time to make these things clear and speak up for the sake of so many autistic young adults and teens who live with self-loathing because of celebrity autism parents inadvertently gaslighting the attitude in them that those things that make them autistic must be code switched off, suppressed, and who they really are must be hidden away. 

The average life expectancy of an autistic person is 36. I would argue that what makes navigating this world as an autistic person so risky is not just being autistic, it is the way every layer of society bakes ableism into the structure of autistic lives such that from childhood to adolescence it becomes internalized and increases risks of harm. We parents have to stop contributing to this cycle of loathing and alienation with misinformation, myths, and false narratives. It's time we understand the impact that our words and actions have on our children and the entire autism community. 

I can't keep Toni Braxton from misinforming the public about her opinions on autism or her son. I can't keep her from continuing to speak about him without him although he is now a celebrity in his own right and supposedly capable of speaking for himself. But what I can do is point out what is wrong about her behavior and the damage it is doing. What we can all do is recognize this and not pave the road to autism hell by allowing ourselves to be led by celebrity or personalities instead of peer-reviewed factual knowledge of what autism is and how we can facilitate a better life for our children. 

Friday, June 15, 2018

Against The Autism Parent Feedback Loop of Woe

"Please try to remember that what they believe, as well as what they do and cause you to endure does not testify to your inferiority but to their inhumanity "
-James Baldwin 
The Fire Next Time  
My biracial nonverbal autistic son,  at about age 5,
expressing shock through the gestural language he created.
Image posted with the consent of subject ©Kerima Cevik

Stephen Prutsman posted an opinion piece to the Autism Society San Francisco Bay Area blog, and while browsing newsfeeds on social media I read it. The blog post disturbed me so much I posted a brief response in the comment section.

Mr. Prutsman headed his article with two images, a rainbow infinity symbol image he meant to represent the neurodiversity movement, and a disturbing photograph previously posted by his ASA chapter president alleging to show property damage to the upholstered seats of her car done by her autistic son.

Despite the reality that all content not spontaneously live streamed online is curated content, no one questioned the veracity of the statement that property damage to this car was inflicted by an autistic teen. That was something that bothered me. I wasn't there when the alleged incident took place. I am a stranger viewing this content and reading the hashtag of autism awareness beneath it. How do I know how the seats of this vehicle were damaged? I am presuming the honesty of a parent who shamelessly posts her own son's worst moments for the shock value. People can only ascertain character from words and deeds not from organization position and status. Status and power are not equal to ethics so, despite my presumption that the chapter president wouldn't post a claim that is untrue, it should still be pointed out that broadcasting anything to a public audience needs fact-checking. That means accusations about the behavior of another human being that cannot be verified should be viewed with skepticism when the accused individual is disabled such that they cannot defend themselves.  

 His article included a disturbing comparison that clumsily used African Americans and Sickle Cell Disorder. That was, in fact, a type of clueless racial microaggression. But the nature of Prutsman's blog post disturbed me so much I decided to address the inappropriate use of race and race-related illness as an extension of the use of Black suffering by affluent white people to gain an edge in debates having nothing to do with issues of race or African American people like myself elsewhere.

 I am guessing his goal was to lay out his thesis while defending his chapter president's right to display negative content about her disabled son on the "raising awareness" excuse of what they both define as the real or true manifestation of autism. 

It got me thinking about this large problem I once thought our community would work at solving. The problem is an autism parent emotional sink that is Internet-hosted, blog and social media fed, and toxic. 
My son, and Afro-Latino presenting male, with brown curly hair
wearing a black turtleneck sweater,
 holding his AAC device, an iPad equipped with
TouchChat AAC outdoors
green trees can be seen in the background.
Image posted with the consent of the subject. ©Kerima Cevik

It isn't because nonverbal autistics like my son are "acute" as Mr. Prutsman infers in his essay. It is my hypothesis that such an emotional sink happens when parents like Mr. Prutsman and his ASA chapter president begin losing the emotional and physical wherewithal to support their disabled family member's needs without help. Under these circumstances, when negative events happen, these parents retaliate by venting their clinical depression, sleep deprivation, frustration, and distress on the autistic offspring by posting their worst moments on social media. 

When I named this blog The Autism Wars I meant the wars for accommodation, inclusion, and representation for my son and his neurological peers. The wars for the presumption of his competence. From what I understood of his essay, Mr. Prutsman believes the autism community can be divided into two warring camps and his camp, camp b, is at war with the neurodiversity camp, camp a. 

I am not at war with Mr. Prutsman, his oversharing chapter president or the SFASA. If I am at war with anything, it is the culture where ableist attitudes like theirs are incubated. 


Is this group of parents within SFASA, led by its executives like Mr. Prutsman and its chapter president, caught up in what I call the autism parent feedback loop of woe? If so, as this pain/frustration feedback loop escalates unencumbered, is there a genuine risk of catastrophic outcomes? 

I have had these concerns since encountering parental rhetoric similar to parts of Mr. Prutsman's essay in blogs by others whose written displays of frustration and despair escalated to a deadly conclusion. That is why seeing such a post from an executive of an autism advocacy chapter so disturbed me.  He and his chapter president are part of the leadership of an advocacy organization supposedly existing to champion autistics like my son. What message is this sending to the disabled members of this chapter? I wonder if they realize how many autistic adults parent autistic chidlren? How many such parents will happen upon Prutsman's blog through social media browsing?

Let me take a minute to define how I think this feedback loop works:

1. Digital Exhibitionism: Autism parent group leaders who constantly overshare about their challenges with their kids, who make every disability-related challenge experienced by their offspring about them rather than the child, are using this as a coping mechanism for their own frustration and individual distress. They are typically overwhelmed (frustrated, sleep deprived, clinically depressed, etc) and as a result, may be making decisions with compromised executive function. 

2. The positive Feedback loop of Pain, Grief, Frustration: These de facto peer-moderated support groups for overwhelmed parents, if left unregulated, include lots of positive attention for expressing distress and pain. The more the lead parent posts, the louder that parent complains, the more attention they get.

3. If left unchecked, getting attention for being in pain becomes its own reward. The more that state of mind is rewarded, the more motivation there is to constantly express pain through digital exhibitionism and the publishing of more dramatic negative content.

4. This feedback loop does damage to a person's motivation to seek actual long-term help for the targeted disabled child or themselves because it's easier, more accessible, and more rewarding short term when people need immediate comfort after a distressing situation at the expense of one's autistic child. This is especially the case when the autistic target is nonverbal and multiply-disabled.

5. Any attempt to express concern for the disabled target of the negative content to a group in this state of mind will only strengthen its resolve because it encourages the group to make the problem about those they perceive as their attackers. It discourages introspection and allows further wallowing in frustrated angry pain. It promotes in-group solidarity because now there's a common enemy who they believe is persecuting them.

6. Without urgent, long-term, quality trauma-informed care for the parents triggering this cycle by generating and posting the curated, negative content such groups need to validate their anger/pain/frustration, people who are caught in this feedback loop risk eventually escalating to violence towards the targeted disabled family members and themselves. The fact that people who have done this are excused for their behavior and the violence is made to seem inevitable (and the fault of the target) further compounds the issue. 

The case of Isabelle Stapleton, the autistic young woman who was the target of her mother Kelli's escalating digital exhibitionism and eventually became the victim of her mother's attempt to murder her, is an example of how constant inappropriate validation for posting such negative content online can escalate and become dangerous to the disabled target. 

 Kelli Stapleton's constant postings of videos and images violating Isabelle's HIPAA rights and her blog about parenting Isabelle deliberately named The Status Woe acquired a large, cult-like following of parents. The tone of frustration and defiance at anyone expressing concern about posting negative content is similar in tone and approach to parts of Mr. Prutsman's written content.

 I believe groups and individuals with large public platforms who promote this culture of validating negative content targeting autistic offspring create an attitudinal shift that enables escalating risks of potential harm to the autistic youth targeted by such digital assaults. 

The plight of artificial intelligence exposed to negative or offensive social media content gives us a painful clue of what impact negative social media curating and consumption can have on people.  Norman the MIT AI  fed with Reddit data who now only thinks of murder and death, and Tay, Microsoft's chatbot who Twitter taught to be racist and misogynist,  show us that the culture of frustration, perpetual mourning, infantilization, hostile objectification of autistics with high support needs, and resentment that drives oversharing and defense of negative content in these autism parent groups may pervert the minds of exhausted, distressed parents. 

Our community has an abnormally high rate of filicide-suicides. I believe this phenomenon needs to be studied in the context of the influence of online groups caught in these feedback loops. 

Here is my other concern with his article.  

Mr. Prutsman's thesis in his essay was meant to explain his answering 'yes' to the question “Is it Time to Give Up on a Single Diagnostic Label for Autism?” citing the title of a questionable commentary by  Dr. Simon Baron-Cohen in Scientific American. 

Prutsman's essay argues for a new label as a kind of weaponized tool for him to wield as an autism dad. His demand for a new label for "acute" autism is not because the group diagnostic designation fails to encompass the entire autistic population, but because he views the label autism as being "tainted" by any group that disagrees with or disputes their parental group's rigid, negative, definition of autism. Prutsman defines severity and indeed autism itself by how he and parents like his chapter president view any negative behaviors rather than by proper diagnostic standards.

  He appears to blame the neurodiversity movement for what he calls 'tainting' of the autism label. Prutsman writes that this tainting happened by presenting autism as an identity, and overemphasis on positive attributes of being autistic by the neurodiversity movement.  

What is interesting about how he defines the neurodiversity philosophy is that it is not at all accurate. Unfortunately, the term neurodiversity has been conflated and the popularity of the book NeuroTribes confused rather than clarified the term. 

It is clear now that a great many autism parents don't understand the concept. Let me repeat one of the best quotes I have ever read about neurodiversity :

"Neurodiversity isn't about pretending that autism, other developmental disabilities and psychiatric disabilities are all sunshine and rainbows. It's about believing that we should be able to live our lives on our own terms and that our community should continue to exist, and doing whatever we can to make sure that happens."
- Shain M. Neumeier, Esq.
Mr. Prutsman othered anyone who might object to the targeting of autistic youth by the digital display his chapter president employed. He lumped them together into a stereotyped other by listing any commentary from those he did not know and dismissing it. Under the category of non-relevant commentators, he cited the neurodiversity movement or "group a," non-participating chapter members,  and online readers like me who were not local. This allowed him to define a collective enemy for his group to view as antagonists. 

 Prutsman implies that the enemy has won the autism label battle.  Now his group must have a new autism label for their kids, that restores complete power and control of the autism conversation and public policy dictatorship to them.

The sad reality of things is that parents like Mr. Prutsman and SFASA's chapter president who are affluent, white, and embedded in the feedback loop of woe are still the loudest and most heard voices in our community. Yet that massive platform drowning out the voices of the autistics they are supposedly speaking for doesn't seem to be enough.

Their resentment of everyone else, particularly autistic adults having agency in the future of what happens in their own lives harms my son by perpetuating a deep seeded ableism that negatively influences the public view of nonverbal high support need autistic youth. 

Autism parent feedback loops of pain and frustration don't provide any solutions to the behavioral challenges parents like Mr. Prutsman want constantly highlighted by generating and promoting negative curated content.

 The emotional opinion that professional diagnostic labels should be changed to disenfranchise one part of the community and allow control of autism public policy to rest completely in the hands of enclaves of parents too wrapped up in their own feedback loops of misery to  see the need to protect their own disabled offspring by not oversharing negative content is a risky proposition on his part. 

 He is not really asking for a new autism diagnostic label. He's asking for a legal or medical excuse to excise a massive part of the autism community so they can run the autism world. Without the consent or voices of their own autistic loved ones or parents like me.

And here is a sidenote. Yes, nonverbal humans can indicate consent if they are allowed to. Once competence is presumed and communication pathways actively sought for nonspeaking people, yes and no gestures, switches even eye blinks are possible.

 I don't need a new DSM label for my autistic son. Nor do I need a parent who is oblivious to what our son needs demanding one in the name of all high support needs parents and their offspring. What I need is for parents like Mr. Prutsman to grasp is that every stakeholder in our community has a right to equal representation whether he agrees with it or not. He can't live in a world segregated by those he accepts and those he doesn't. I'm Black. I don't need to remind us that my racial peers are still suffering from that idea.

 Abusing one's large platform to enable digital oversharing and abusive content generation is contrary to the principles of an autism advocacy chapter executive. But what can be done to reach such parents? I am afraid the nature of Internet interaction makes such an effort futile.

The question for us is what can be done to help break the toxic online culture that builds these enclaves of parents trapped in the autism parent feedback loop of woe? How can advocacy groups reach parents who are in this state? What happens when the loop exists within an advocacy organization's power base? 

Because something has to change here. This type of dysfunction is the root of community altercations and I suspect the root of eventual harm to autistic children and youth. We must seek solutions.

 This is unsustainable. 

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

Wednesday, April 25, 2018

Autism Month Essays: Against The Presumption of Incompetence


Mu in a green hoodie in his favorite spot, debating whether or
not to visit the wild ducks in the pond. Posted as always with
the permission of the subject. © Kerima Cevik
When parenting both our children, my husband and I tried to make certain they knew exactly who they were and hoped they eventually understood that the labels they carried were things they could take ownership of and apply to help them navigate their lives more effectively. 
Our daughter has a clear idea of the entire scope of her multiracial and multicultural identity. Our multiracial, multicultural, nonspeaking autistic son is 15. I have tried my best to ensure he knows his heritage despite communication challenges. I have found other ways of showing him who he is; of indicating to him it is okay to be who he is and that we are proud that he is our son as he is. We want him to know we will be doing our best to support his efforts to live an autonomous life, and such a life must begin with an acceptance of his entire identity.
My son likes to watch Disney World travel infomercials on YouTube. One day he came into the office I share with him to show me a video. The video was a Disney Parks episode where parents were describing what the Disney experience was like with their daughter, who carried an ID/DD (Intellectual Disability/Developmental Disability) label. At the point where she described her daughter as having a developmental disability, my son stopped the video and put my hand on the child's image and then placed my hand on his head. I shook my head yes in response. I said "Yes, son. You are like her. She has a diagnosis of Down Syndrome. You are Autistic."  He hugged me and left the room. I stared after him, an emotional mess, stunned with surprise, shock, sadness, and relief, unknowingly shedding silent tears of pride. 

Knowing ourselves and understanding where we are similar and different from others is a life-altering affirmation of one's competence. My son arrived at this understanding and communicated his suspicions to me without uttering a word.Grasping the scope of one's disability is a giant step in self-advocacy.

 To some degree, everyone needs certain labels. They form the framework of how we begin to define ourselves. But many labels are not positive or even accurate ones, and sometimes they are forced upon us. In fact it may not be the label itself but how we ascribe meaning to it in everyday usage that may devastate. Some labels carry the baggage of bigotry. 

Many parents who impose the goal of becoming indistinguishable from their typical peers on their autistic children feel the idea of acknowledging that their child may carry an ID/DD label is an abhorrent barrier to normalizing them. Additionally, some schools abuse the power to label a child ID/DD on IEP documents because they want to segregate the child from typical peers when said child might do better with supports in an inclusive classroom. The results of either of these circumstances are some devastating potential outcomes to the autistic student that parents and professionals don't spend enough time considering when making arbitrary decisions for or against the use of the ID/DD label. 

I began thinking about how many autistic students were labeled ID/DD and how they came to terms with that label a great deal after my son came to me to question his own identity in gestural language. I was trying to catch up on my friends' status posts on Facebook when I read an entire thread that brought the entire question of the ID/DD label into sharp, painful focus. It was about a family being pressured by an IEP team to add an ID label to their child's disability designations. Several people who were academics, educators, activists and autistic advocates who carried the twice exceptional label were tagged to give their input on the advantages and disadvantages of accepting such a label. I was not one of those tagged.

My son carries the ID/DD label, not by choice but because that is his medical reality. If there is pressure on any family in a school setting to add this label, they need to understand that whatever they decide potentially changes the entire quality of their child's educational future, and this is not always a positive change. The aversion and abhorrence that people who should know better displayed when discussing accepting this label truly disturbed me.

 I'll try to explain why.

I came into this world with dark skin. I am no more able to hide or deny this identity than my son is able to hide or deny his ID label. Yes,  the ID label comes with a heavy burden to fight society's lifelong presumption of incompetence. There was a time when African American labels came with the presumption of incompetence as well as the false accusation that the amount of melanin in one's skin determined who was more intelligent. We dark-skinned people continue to fight these stereotypes. 
Being an African American woman carries lifelong challenges and injustices with it that made me more aware of ableism directed at my son. Despite the hardship, we now know that a clear grasp of a person's identity can give them self-respect that hiding it in shame cannot. The idea that because of these hardships, an identity is something that can be opted out of is wrong. What needed to be said in this thread that wasn't was does this child have a full professional diagnosis? Does that diagnosis include an ID label? If it does, then depriving them of the support they need by hiding this is like leaving a wheelchair user's chair at their departure airport. 
I thought it was our job to right the wrong of institutionalized presumptions of incompetence. That bit of ableism is the fundamental rock in the wall of segregation from every opportunity that keeps our loved ones from their rightful place in our society. History shows clearly that presuming anyone incompetent begins an othering of groups that slides into catastrophic abuses and oppression. There was an air of defeatism in this thread asking whether or not to allow the ID label on a child's educational record that brought me down. Our loved ones will always feel they are less than others if we simply accept the wrong-headed belief that giving a person an ID/DD label equals a lessening of their personhood.

I just don't know when we will get past the idea that if a person cannot speak or learn in the way the average person can, they are less than others in society. We tend to blame our student's disabilities for our societal failure to meet their educational needs when the truth is we have not changed the fundamentals of the way we educate our children since the industrial revolution. Why aren't we fighting to rethink and redesign learning to reach ID/DD students' needs and learning potentials? We simply passively accept things as they are. And each year, our offspring are given less support and less access to learning particularly when they are made to wear that label.

The largest issues I have about parental fear of the ID label and the presumption of incompetence is that if we do not fight the baggage forced on our loved ones with their neurological identity. How can we teach them allow them to carry this label with pride unless we can let our children know with sincerity that ID/DD labels are nothing to be ashamed of?

I wonder if this defeatist attitude contributes to depression and anxiety in our loved ones? I also worry  that denying knowledge about a critical aspect of a student's disability enables the potential devastation to the mental health of the student not aware of why they may have challenges in areas where their peers are succeeding, I wonder how much trying to opt out of ID/DD labels inadvertently slows progress creating educational methods that may maximize our students' potential because distaste for the ID/DD perpetuates our society's  presumption of incompetence. 

It is our responsibility to make our children matter by fully understanding what accepting the ID/DD label means. They can't accept themselves if we are afraid to say whoever they are, whatever their disability constellation entails, we accept them. Believe me, our offspring feel our shame and insincerity and internalize it.

We parents passionately demand better schools, better IEPs, and an end to the use of the r-word. I am thinking that we also need to take a hard look at our own attitudes and make an active effort to change them so our offspring can sense that shift organically and not internalize any subliminal ableism about the labels used to identify their neurology. 

Peace