Showing posts with label African American. Show all posts
Showing posts with label African American. Show all posts

Forcing Friendships Doesn't Equal Autistic Youth Gaining Social Skills

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This could save our children from irreparable trauma.

Peace.

----

A version of this article was previously published at The Autism Wars.
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#AutisticWhileBlack: Diezel Braxton And Becoming Indistinguishable From One's Peers

Kerima Çevik
theautismwars.blogspot.com

The author's idea of what displaying autism positivity looks like
[Image: a Black woman over 50 with braided gray hair wearing
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 thirteen, Ms. Braxton was told he no longer met the criteria for autism. According to the 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.

Autism 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 later in "formerly autistic" adults as mental health challenges, and PTSD.

A parental 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 when 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.

Diezel is the son of a celebrity, so his life is at this moment might appear significantly better than that of 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.

Toni Braxton's 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, 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 Ehlers-Danlos Syndrome (EDS)? These common autism traits and co-occurring conditions 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 (AAVE) 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 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.

Braxton 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 give our people some sort of hope and inspiration.

It is time to make the harm Braxton is causing clear, and speak up for the sake of so many autistic young adults and teens who live with self-loathing in part because of celebrity parents who inadvertently gaslight them with the attitudes that the things that make a young person autistic must be code switched off, suppressed—and who they really are must be either hidden away, or eradicated.

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 on 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 what Braxton is doing, and not pave the road to autism hell by allowing ourselves to be led by celebrity or personalities. We need to seek peer-reviewed factual knowledge of what autism is, and understand how we can facilitate a better life for our children, by arming them with accurate, empowering facts.
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#AutisticWhileBlack: To Siri With Love's Shallow, Dangerous Take on Forced Sterilization

Kerima Çevik
intersecteddisability.blogspot.com
theautismwars.blogspot.com

Kerima Çevik, photo courtesy the author
[image: Gray haired Afro-Latina woman
next to a windowshade, looking to the left.]

[Content note: Contains descriptions of involuntary medical procedure, including sterilization, on Black and disabled people.]

I am trying to plow my way through Judith Newman's autism parenting book To Siri with Love: A Mother, Her Autistic Son, and the Kindness of Machines. It is slow, painful reading.

How can I explain my serious ethical concerns about yet another bestselling autism book that capitalizes on presenting the experience of disability from a parent's reduction of a disabled individual’s worth to how he makes his mother and those around them feel?

I can tell you that Newman's passage about looking forward to acquiring a medical power of attorney so she could involuntarily sterilize her autistic son Gus tainted the rest of the book for me. A vasectomy, she says. That passage has so much wrong packed into it that shocks, frightens and disturbs me as both a Black woman, and the parent of a nonspeaking autistic teenaged son of color.

I read what Newman wrote, and the years of harm to the black body—borne by my entire race—burst open like a septic wound. Combined with a year of escalation in harm to our people, it was just too much.

Newman writes about looking forward to being able to sterilize her child. This sent chills down my spine. The presumption that Gus might inadvertently father a child, and that this would be some sort of calamity, is both extremely ableist and demonstrates a clear disdain for any potential her son might have to lead the autonomous, inclusive community-based life that is the legal and human right of every disabled adult in our society.

Newman's assumption presents the disabled young adult as passive and inept, when in reality parents are responsible for ensuring that our children's primary life skills include sex education that might protect them from abuse and harm. This need, and the realities about sexual assault of disabled children and adults were featured in a recent NPR series, with statistics that tell a frightening story of helplessness and cyclic abuse because we insist on viewing our own children as having to be 'fixed,' rather than educated, and taught boundaries and self-protection.

Sex education for neurodivergent youth and adults exists. These courses teach students all they need to know about of their own bodies, setting and respecting boundaries, reproduction, self-care, and how to avoid harm in accessible language.

The author writes that she avails herself of access to autistic adults willing to be information resources, yet displays a lack of information about the existing resources for her son to navigate higher education and other aspects of life as a disabled adult. This contradiction in her book is confusing, as well as disturbing.

Gus might turn out to be a more patient, kinder, and understanding parent because he knows what it means to be disabled and subjected to maltreatment as a result. Gus may choose not to be a parent because he knows what it means to be disabled and subjected to maltreatment as a result. Gus is able to speak for himself. The choice, with supported decision-making if he needs it, should be his.

Forced sterilization is part of a larger nightmare of systemic abuse of the black body we've survived but can't forget. The practice of modern gynecology was built on the torturing of the black female body, without the benefit of anesthesia. J Marion Simms cut away at our ancestors' bodies, forcing slave women to hold down their fellow helpless enslaved victims while he did horrible surgeries on them. He brushed aside protests and outcry, by insisting that our women could not feel pain.

He is hailed as a great man. Statues stand in his honor.

Ms. Newman cannot feel what that legacy does to people. She blithely brushes it off in a great hat trick of compartmentalization, secure in her mistaken idea that all parents agree with her view of their disabled children. I beg to disagree. This parent does not hold Ms. Newman’s view of disabled children.

"Mississippi Appendectomy"

See, I can't forget what happened to Fannie Lou Hamer and the African American women of Sunflower County, Mississippi:
"Diagnosed with a small uterine tumor in 1961, Ms. Hamer checked into the Sunflower City Hospital to have it removed. Without her knowledge or consent, without any indication of medical necessity, the operating physician took the liberty of performing a complete hysterectomy.
"Three years later, as a leader of the Mississippi Freedom Democratic Party, Ms. Hamer spoke about her experience to an audience in Washington D.C. – telling them that she was one of many black women in her area that had been a victim of a “Mississippi appendectomy” (an unwanted, unrequested and unwarranted hysterectomy given to poor and unsuspecting Black women). According to her research, 60% of the black women in Sunflower County, Mississippi were subjected to postpartum sterilizations at Sunflower City Hospital without their permission. A number of physicians who examined these women after the procedure was performed confirm that the practice of sterilizing Southern Black women through trickery or deceit was widespread."
Even if Newman claims she's changed her mind now, even if she chose to retract that vile passage from all future copies of her book, this random musing of Ms. Newman's has opened the floodgates to dangerous thinking. Involuntary sterilization is not an idea that should be recirculated in a time of resurgent racism, and vile ableism. It is not an idea that should reemerge in an environment where disabled parents must constantly fight to keep custody of their own children. It should not be introduced to parents as some sort of justifiable option, particularly couched in literary sarcasm or humor, in a nation where Buck v. Bell has not yet been overturned.

Though in the book Newman gives a partial checklist overview of the history of disability and sterilization, she never mentions Buck v. Bell. How is this possible?" Every parent of a neurodivergent offspring in America should know about Buck v Bell, the harm visited upon innocents because of it, and the potential harm that can still be done to others because of it. Here:

Buck v. Bell, 274 U.S. 200 (1927) is a decision of the United States Supreme Court, written by Justice Oliver Wendell Holmes, Jr., in which the Court ruled that a state statute permitting compulsory sterilization of the unfit, including the intellectually disabled, "for the protection and health of the state" did not violate the Due Process clause of the Fourteenth Amendment to the United States Constitution. The decision was largely seen as an endorsement of negative eugenics—the attempt to improve the human race by eliminating "defectives" from the gene pool. The Supreme Court has never expressly overturned Buck v. Bell.

Buck v. Bell allowed the forced sterilization of a neurodivergent young woman and her 52-year-old disabled mother. Buck v. Bell was used to justify thousands of forced sterilizations of disabled people. Then came the thousands of forced sterilizations of African American women and African American girls who were raped. That escalated into the forced sterilization of poor white males and females. Forced sterilization continues today:
"A 2013 report from the Center for Investigative Reporting found that in California between the late 1990s and 2010, hundreds of female prisoners were sterilized without proper state approval. As a result of the investigation, Governor Jerry Brown signed a law banning forced sterilizations in the California prison system."
In 1986, Canada had its own Buck v. Bell moment. It was called the Eve decision, and it ensures forced sterilization doesn't happen there. Perhaps it is time to challenge and defeat Buck v. Bell in the U.S. Perhaps it is too late. But we should all be afraid because forced sterilization has already happened here, and continues to happen.

In her one unfortunate passage, Ms. Newman may have opened Pandora's box.

Here's what disturbs me the most: Our children aren't dogs or cats. They are human beings who need varying degrees of support. Now that you all know what was done to people of color, disabled people, and other marginalized groups, try to feel our distress. Don't treat disabled human beings, your own children, as othered creatures to be de-barked, spayed or neutered into compliance for our convenience. We know in our hearts this path is wrong. This is not something to daydream about or look forward to doing. This is a eugenics rabbit hole.

Literature shapes societal attitudes. What we write in the Internet age, particularly when content creators have as massive a platform as Ms. Newman has, can change the fate of thousands of autistic teens and young adults. We are their parents. Not their wardens, overlords, or owners. What we write can lead to events and public policy changes that might literally make their lives hell on earth.

We are living in a nation grappling with a chief executive who has recorded incidences of racially disparaging and ableist remarks, and who is trying to legislate based upon his personal biases. His remarks have enabled a harmful nationwide attitude shift, and as a result people are moving from vocalizing bigotry to acting on it. We have also seen escalated attempts to enact major changes in public policy, changes that may cause unprecedented harm to disabled people, people of color, and multiply-marginalized groups.

This means all parents authoring autism-related content must think about the consequences of what they write, before rushing to look for provocative vignettes for their bestsellers.

People took the right of consent from us for generations because they didn't like our color. They believed our race was 'defective.' All these unjust, stereotypical labels are being hung on our disabled children now. I cannot accept my son’s right to agency in his own life being taken from him and his people, because some author couldn’t imagine a world where her son has the competence to decide his own fate. It is her obligation as his mother to take the actions necessary to ensure he gains the skills required to gain such agency.

To me, seeing this book written from the perspective of white privilege, yet much-lauded, and hailed as witty, honest, and moving, is heartbreaking.

But unlike Ms. Newman, I won't generalize and assert that other parents in the autism community agree with me.

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Resources:

The Sexual Assault Epidemic No One Talks About
https://www.npr.org/2018/01/08/570224090/the-sexual-assault-epidemic-no-one-talks-about

The Negro Project
https://www.nyu.edu/projects/sanger/articles/bc_or_race_control.php

Literal Silencing
http://www.autistichoya.com/2013/09/literal-silencing.html

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children
https://www.ncd.gov/publications/2012/Sep272012

Buck v. Bell
https://supreme.justia.com/cases/federal/us/274/200/case.html
https://www.democracynow.org/2016/3/17/buck_v_bell_inside_the_scotus

The Eve Decision: Why Forced Sterilization is not a fear in Canada
(with thanks to Emma van der Klift)
https://cic.arts.ubc.ca/the-eve-decision-1986/

Authoring Autism
https://www.dukeupress.edu/authoring-autism
Professor Melanie Yergeau's book addresses the ways literature is used to present stereotypes that dehumanize autistic characters, thus perpetuating structural ableism.
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