AutisticWhileBlack: At The Intersection of Deaf Culture and Nonspeaking Autism

 

Image of Mustafa, age five, signing to his sister in a gray 
long-sleeved shirt and black slacks. He is a brown Latine 
presenting boy with short black curly hair. Image credit
Kerima Cevik

When Mustafa was three years old, he began to miss speech milestones. At first, when I spoke to him in English, he responded in English. When one of us spoke to him in Turkish, he responded in Turkish. When a kid at the playground, or I, spoke to him in Spanish, he responded. But one day, when he was spoken to, he ceased responding verbally.

After we got his diagnosis, his sister began teaching him baby sign language. Simple things, to help him communicate his needs. About the time we were struggling to learn these signs with him, both his father and I were working and Musti's sister was going to college. So baby signs began to lag.

One Friday night, we were all exhausted and decided to order a pizza. When the pizza arrived Mustafa rushed to the door and peeked up at the pretty delivery person, a young woman who was working her way through college. Without speaking she looked at him and began signing at him. Mustafa signed and jumped excitedly in response. It took us a moment to realize our delivery person was deaf. She was reading our son's baby signs and body language and totally understood him.

She understood him completely. It was a monumental event for us.

This kind of interaction happened whenever we met deaf people until he entered Kindergarten. Whenever we were in a public space, deaf people simply presumed he was deaf and would immediately sign back, so joyfully and rapidly that it took us moments of standing before them confused before they realized that we didn't know enough sign language to communicate at that pace, and neither did Mustafa. 

They didn't just presume he signed. Those who responded so quickly were mostly African American deaf community members. They observed his body language as well as his attempts to sign. We, verbal speech-centric folks, have somehow forgotten how critical gestural language is to communication. But deaf community members have not.

What does a family do when the school system refuses to implement communication as an IEP priority, teachers and staff who sign refuse to respond to their son's efforts to sign his needs, and that family encounters lateral ableism that bars them and their nonspeaking son from learning sign language? Here's one example of what happened to us. His first thanksgiving event at his school resulted in a series of holiday photos posted to the school's webpage which inadvertently showed our son trying to sign to his teacher. The parent who took the photos, upon realizing that they showed our son signing to the teacher and the teacher who was trained in sign language deliberately turning her back on him, warned the school, who took down the photos before I could capture them and bring them as proof to the upcoming IEP meeting that our son was capable of learning sign language. That parent's reward was the school providing her child with a much wished-for item on the child's IEP. Because somehow it was her belief that stepping on my son's right to communicate was necessary to help her child.

His teacher insisted that our son did not have the fine motor skills to learn sign language.

I tried using programs and online resources. It is difficult going and I find that nuance is lost, meaning one might believe they are signing one thing when they are actually signing something else entirely. Then there is the cultural specificity of Black sign language. For our son, the sign language he learns needs to make him a part of his community. Like African American Vernacular English(AAVE), Black sign language should include him. But those who might teach him are not put in a position to be paid for their labor. In our former school district, where the non-speaking student body is disproportionately Black and Brown, no African American sign language teachers were employed. Why does this disparity exist?

In 2014, I watched a documentary of a class in rural Uganda being taught sign language. The ages of the students ranged from 9 to 80. They were taught by a teacher who was given intense sign language training in order to return him to rural areas and teach people of all ages born deaf or deaf as a result of illness how to communicate through sign language. 

We are the supposedly developed nation, yet we do not do as much for our own nonspeaking adults and children. Despite the challenges of the Ugandan program and the ableism displayed in the documentary, deaf rights activists are fighting to give their community the gift of communication. It is that important. 

Meanwhile, Mu, my husband, and I are back to the task of trying to find a way we can all learn to sign properly in order to help our son communicate beyond baby-sign. There is a universal sign language. Perhaps we will try that. But the reality of our sign language story is that sign language learning should be free and open to everyone who is nonspeaking, in the same way, it is being offered to the deaf rural citizens of Uganda. The basic sign language lessons featured in the documentary above were life-changing for the people who walked miles to get them. The lessons lasted three months. In three months, these people went from isolation to community. The idea that people with ID/DD are not worthy or able to learn sign language is a crock. Lateral ableism as a barrier to access to anything that might help another disabled human is intolerable. Sign language is affordable, can be learned at any age, and can be life-changing.  

So why is something so affordable, basic, and scalable not part of language support for our nonspeaking loved ones and their families? We are such a technology-centric society that we tend to forget that sign language is a communication method that can be gained by all nonspeaking autistics who don't have OT challenges regardless of class and income level. When we say communication first, that needs to mean that all available methods of communication should be considered for AAC.

AutisticWhileBlack: I've Got This

Note, this happened last year. Our school system is closed and virtual this year due to the pandemic. kc                     It happens every few homeschool reviews, but each time it happens, especially when I’ve been up all night with an under the weather disabled teenager, my heart sinks. When I reached my table and greeted the reviewing officer, I say “my son has complex support needs and is a nonspeaking autistic teen.” “My daughter’s a BCBA!” she answered. “We have an Asperger’s program at our school.” “I’ve got this.”
                                                  I grit my teeth and wait. I know what’s coming and I’m so sleepless! I just can’t today. Not today. And away she goes.                                                                

What follows is a long lecture about how incompetent I am to educate my own son. She barely flips through the binder in front of her. I wait for her to pause. “This is his curriculum,” I say instead of responding to something that is actually not legal for her to say to me. I begin flipping through the binder, showing her recent photographs of Mu doing activities, the comprehensive grade report from his online school complete with time spent on each subject lesson, dated, and accompanying worksheets. I start showing his microscope, science lab equipment, apps, books, music and art curriculum, language reports. She finally starts looking at the books and comparing the worksheets to the lesson reports. “Um, well.” “His name should be on the grade report.” “I can’t print anyone else’s grade report out but his, that is the way the online reporting system works.” “Would you like to see the grade report from the online site directly?” (I begin searching for the website on my cell phone. I have only slept two hours. I am trying to hang on to my patience.)

“How old will he be again this coming year?” she asks. “He’ll be 18,” I answer, knowing she knows when he will turn 18 from his portfolio in front of her. I know what’s coming. She answers “18 is a big year.” “We can do a lot more for him you know. He can attend school until he is 21.”

I wanted to shout “Let’s go over what public special education has done for him until the moment it nearly killed him!” Instead I patiently, painfully, again, repeat the story of how I, a staunch believer in public schools, a product of the public school and DoDDs school systems, decided to give up my job, stay home, and home-educate my disabled Black son.

Her smug expression paled, then blanched, then she gasped. Tears came unintended to my face, but I went on, discussing all the harm that led up to the day they “lost” him at school, in the most restricted education environment. How he was “found” by a stranger, an anonymous “member of the local community” who caught him wandering in traffic, a seven-year-old boy who used a wheelchair because of his unsteady gait, who supposedly did not have the OT skills to open a child safety gate, who at the time he went “missing” was in a classroom with a special education teacher, two paraprofessionals, one paraprofessional directly responsible for only him, two classroom aides, and a speech pathologist. A non-speaking autistic little boy who was impossible to miss because he was then in the 98th percentile in height and weight compared to his peers. The school’s story that changed from the telling to retelling, of how long he was missing before they notified us, of why the police weren’t called to search for him, of who found him, of where he had been found [he was found at a nearby pond/ no wandering in traffic] of why he had been washed and redressed and fed grape juice before calling us, of why he was wandering outside on a rainy and windy February day with no shoes or coat, of why he had no shoes or socks on in his classroom in the first place.

I had to repeat to this thoughtless, horrible, ableist woman who decided she knew the story of my son’s life, what it feels like when you are a mother with a heart condition who gets a call that your only son is missing and has been missing for an undetermined length of time and your daughter hears a sound come from your mouth that cannot possibly be human, and you don’t remember but suddenly you have called your husband and told him they have lost your baby and your husband grabs his coat and begins running, he runs out the door of his office at Johns Hopkins, runs to Camden Yards station, runs for the train and calls the head of PGCPS and roars that if a hair on his disabled son’s head is out of place, if they don’t find our boy, he would ensure that he won’t be qualified to be so much as a janitor of PGCPS, he will haunt the man the rest of his miserable life and they had better find our boy now and tell us why we weren’t told when this happened.

And I tell this arrogant woman how my daughter picked me up from the floor and we grabbed our coats and ran, ran for a taxi and told the man driving hurry, hurry our boy they had lost our boy, and how the police shuffled us from one phone to another and hung up on us and then I asked her if she knew what it felt like to call your son’s pediatrician crying and have the man tell you that it was best if he did an exam for signs of rape, and when he says your son is okay you hug your daughter and son and cry and cry and now the nurses and staff who stayed late to wait for the outcome are crying and saying “no copay today” and now the woman has blanched chalk white and remains quiet.

She finally begins really reviewing his portfolio. “You've done an amazing job here, “ she says, her voice breaking. “How..” “My daughter,” I reply. “After the final school incident, she changed her major.” “Went back to school and got a master's in special education specializing in complex support needs and low incidence disability.” “She helps with curriculum and supports my instruction.” “My husband provides the technology and finds things like the microscope that displays on his computer screen. “ He is also the support for my son’s adaptive P.E. work. “
She writes approval for the portfolio silently. She says, “we aren’t that county.” “This would never have happened in our school system.“ “I have been told this,” I answer. “But he is my only son. The last child I will ever have. I risked my life to give birth to him. I can’t take the risk he’ll be harmed again. “

Another brutal portfolio review is over. I leave, fighting back tears, thinking, “don’t worry son, we’ve got this. “

AutisticWhileBlack: Race, AAC, and The Right to The Voice of One's Peers

 

In 2017, O, the Oprah Magazine, commissioned a famous white photographer, Chris Buck, to deliver a series of shocking photos on the reality of how racial inequality is socialized into the American psyche. The most striking photo is of a white child with long blonde hair standing in front of a shop window filled with Black dolls. 

Had Oprah's team thought this through, they would have chosen a talented Black photographer to both present the topic and uplift Black photographers from obscurity. But the reality of what life was like for me and all my peers as a child was clearly displayed in that script flipped series of magazine photos. 

Asking me why I want anything specifically African American for my Black autistic son is a highly painful personal question. The answer lies in the reality thrown into stark relief in the photos displayed in that magazine. We are taught through every channel of mass communication that our societal worth is less than whites. This system attempts to subliminally teach us that we are not humans who matter. It is meant to remind us that the world is not made for us.

Our country dictates the scope of our culture and societal value by how we make the dominant culture feel and react, and how we serve and entertain them. These views of speech, beauty, justice are subliminally infused in our daily lives. Our hair is "not right" because the standard of beauty is white hair, which is largely straight. Our speech is "not right" because our English has a lilt and flows like music. It is okay to have a foreign accent but not okay to have an Ebonic one. We were taught to eliminate the Blackness from our voices if we wanted to succeed and lift our race above poverty.  It seems to be okay for white people to mimic and mock our speech, or to profit from our athleticism, creativity, and intelligence, but it has been taught to the white majority that to date, the African American Vernacular (AAVE or AAE) is a sign of a lesser command of English rather than a cultural variation. AAE has been used to diminish us and make us feel that we are not educated enough or assimilated enough to be acceptable to mainstream society. It has been used to excuse injustices like disparities in criminal justice, healthcare, and work-life benefits.

Asking me why would I want an Assistive Augmentative Communication (AAC) device made to serve my son to have the voice of my Black brother is like asking why I would want my son to have a Black prosthetic arm instead of a white one. The idea of having this option is long overdue. If my son could use verbal speech, his voice would not sound like any of the voices on his current AAC devices. It is a question that shouldn't have to be asked. It matters more than anything that a person has the equivalent of a speech device made for the entirety of who that individual is. And right now, in 2020, that option does not exist for my son and his AAC using Black autistic peers.

But this question is extremely painful for me. There was a brief part of our son's life when he could use verbal speech. Somewhere we have a video of him speaking Turkish to me. It happened when his father was asleep and I was recording. Our son asked if he could have some food. His voice was the African American toddler version of his father's. His Turkish was beautiful. I witnessed that he fully understood the Spanish other toddlers at the playground spoke too. He responded appropriately to all their requests he join them in play and on various pieces of playground equipment. 

I am a heritage Spanish speaker. My husband is a heritage Turkish speaker and our daughter is an interpreter and educator. Realizing our son had a facility for being multilingual with the ability to smoothly code-switch from one language to another was one of the happiest days of my life.

Our son still has that talent for a receptive understanding of many languages. But the hope of verbal speech, impeccable AAE/Turkish /English/Spanish with that distinct AAE lilt is gone. The idea that he could have a voice that even slightly resembles the one he lost in his assistive technology is both exciting and heartbreaking. 

It is heartbreaking that I must explain why this matters. It is heartbreaking because we are in the year 2020 and it should not have taken this long to realize this need. It is heartbreaking because asking me this question brings a great deal of pain to me. It forces me to remember that generations of our people have had to justify our right to the same quality of life as white American society. It reminds me that I was the little Black girl looking in the window at all the white dolls and not finding any who looked like me.

We have a right to the same quality of life white disabled people already enjoy. Asking me to give reasons why a nonspeaking autistic Black teen would need an African American voice on his AAC device shows how much further we need to travel to get there.

P.S. The need for a variety of African American voices on AAC devices is also a matter of hope. Hope that someday, AAC device access will not be blocked by affordability. A disabled Black nonspeaker's right to the assistive technology they need to communicate should not be something unaffordable to most of our people. AAC devices, like prosthetics for physical disabilities, should be available and affordable to all, regardless of race.

AutisticWhileBlack: Lift Your Family Out Of Autism Mourning Culture

Image of Mu in a red and black t-shirt and black shorts
under a canopy that protects him from
insects without the use of bug repellent, posted with
the permission of the subject. © Kerima Cevik

Mourning is a word that parents, including me, have misused. Being told by a medical doctor that our son would never improve and would eventually be institutionalized caused my entire family to break down in tears of shock. When we got home after an entire day of grueling tests and traumatic news, my husband, daughter, and I hugged Mu and one another and I vowed he wouldn't see the inside of any institution. Then we helped one another buck up and find ways to teach him and enrich his life.

We need to be clear about the language we use to describe milestones like diagnosis day in our children's lives.
I said this elsewhere I am going to repeat it here. I can't tell people how to govern their emotions. My activism is among other things, against parents and carers who abuse and eventually murder their autistic children. The pattern of abuse in every case, and I mean every case, begins with the appropriation and perversion of the process and meaning of mourning.

The Kübler-Ross model of five stages of grief is itself problematic. Yet parent-led autism organizations continue to espouse the appropriation of this model and apply it to parents mourning their children's diagnosis of autism.

Quoting the article "It's Time To Let The Five Stages of Grief Die" on the topic of applying a hypothesis based on anecdotal interviews on how patients handle a terminal illness diagnosis to any or all manner of grief/mourning:

"Despite the lack of evidence to back up the Kübler-Ross stage theory of grief, its original birthplace, On Death and Dying, has been cited 15 509 times on Google Scholar at the time of writing. It has been applied to everything from the grief processes of those diagnosed with diseases like COPD or HIV, to the grief experienced by caregivers of those with dementia; patients who have amputations due to diabetes; doctors who receive low patient satisfaction scores or go through reduced resident work hours; even (and I am not making this up) the grief experienced by consumers after the iPhone 5 was a disappointment."

 And we can add to this the constant presentation of the same expectation of mourning to autism parents. Parents get caught up in a culture of prolonged mourning. They wallow in it. They escalate their own emotional upheaval by seeking out online groups and followers who perpetuate the cycle of this appropriated mourning culture such that said mourning breeds resentment that combined with chronic insomnia end in harm to autistic youth. 

So while I began with being sad at the initial news on a diagnosis day, this perpetual mourning was not a thing I did. My family was given our son's diagnosis in the most brutal and clinical way possible. But our son was right there. He deserved better and we understood that. As Mu got older we realized that the temporary reactive sadness we experienced and overcame wasn't the culture of mourning that some other groups of parents were steeping themselves in. We began efforts to seek out parents who saw their children as they were and accepted them without this constant cycle of mourning based upon inaccurate stages of grief not meant for disability diagnosis at all. Eventually, I came across Jim Sinclair's Don't Mourn For Us. After reading it, I felt that our family was on the right path, and we began to actively stay away from groups of parents who pushed this mourning culture rather than discussing what could be done to support and facilitate better lives for our son and his peers.

Mourning has a meaning that implies catastrophic loss and that, when your child is right in front of you and needs you to be present and supportive rather than grieving and disconnected, is, in my opinion, a reason for a parent to reach out for mental health counseling until they are in a better place and can see their children as they are without mourning the idealization of a child that never existed. Stepping away from this culture of mourning autistic children opens the door to self-healing and true acceptance of disability. We parents should be given a mental health roadmap from diagnosis day onward. Parents need to be certain they have themselves together when this journey begins. Whatever issues we have, individually and, if applicable, as a couple, need sorting before we can help our autistic children. That begins with the culture presented on diagnosis day. There is no room for medical professionals abandoning hope when the potential of an autistic nonspeaking child is not yet measured. Dumping pamphlets on parents and sending them on their way is not the answer either. We are doing diagnosis day the wrong way. We are creating the beginning of this culture of perpetual mourning that fossilizes into resentment and may potentially escalate to violence against autistic children and youth. 

I can't speak for everyone. But when my family made a group decision to step away from the parent mourning culture, we began to see progress with our son that professionals were not getting from him. The most important gift any parent can give to their disabled offspring is the understanding that they are loved, they are capable, they are competent. That can't happen if we insist on mourning what we imagine they might have been if disability were not part of their lives.

AutisticWhileBlack: Love In The Age of COVID-19: Patient Rights

Cartoon image of the author's son at age five in hospital.
Posted with permission of the subject
Credit Kerima Cevik

I have always loved my nonspeaking autistic son, without preconditions or reservations. No pandemic will change my will to fight for his survival. Regardless of the public health crisis, my nonspeaking autistic son has a civil right to receive medical support without the threat of any denial of access to life-sustaining healthcare. The casual way political figures and media pundits are dismissing high-risk citizens as inevitable fatalities of this pandemic is terrifying. Remember that a seventeen-year-old who had no apparent high-risk medical history died from COVID-19 related symptoms after being denied care because he was uninsured. This incident alone should have us questioning a healthcare system that puts getting paid over saving lives. So why has no one been talking about what will happen if nonspeaking autistic patients test positive for this virus?

Despite the surge of COVID-19 cases in New York, Governor Cuomo has issued an executive order that all hospitals allow partners to be with their significant others during the birth of their children. I am asking myself why the governors of all US states and territories haven't issued similar executive orders allowing one parent to be with nonspeaking autistic and disabled offspring with complex support needs should that patient contract COVID-19 and need hospitalization. Is it because they consider our loved ones expendable?

 They aren't. My son and the thousands of children and adults like him have the right to survive this pandemic too. And since disabilities that include verbal communication challenges hinder his ability to advocate for his own life should he become infected with the virus, it is my job as his parent to be there with him.

I realize the magnitude and consequences of what I am asking. I do not even know, as the number of patients rises if my son would receive treatment. His right and my right to it is being debated as I type this. But if God forbid he contract this novel coronavirus and become so ill that he needs hospitalization I cannot allow him to fight for his life without one of us by his side to make certain he is not discarded because he's disabled. I have had a good life. I am willing to pay the cost to be with him, even if that cost is my own life.

 I watched doctors on social media make some pretty unreasonable excuses for why such denial of care decisions are necessary. Yet we know a 103-year-old woman from Wuhan survived the virus. Meaning blanket decisions not to treat any high-risk population-based upon presumptions they won't survive is cruel and inappropriate at best. Our information about this virus, even how it is transmitted is sparse and inconsistent even after four months of heartbreaking attempts to stop the spread of it. Should my son pay with his life for the failure to prepare for this pandemic?

I am disappointed and angry at the lack of any visible response to these public displays of ableism. With the exception of ASAN, Self Advocates in Leadership (SAIL), Disability Rights Washington (DRW), The Arc of the United States (The Arc), the Center for Public Representation, and the Bazelon Center for Mental Health Law,  no major autism-related organization has acted to defend the right of our loved ones to treatment. I saw immediate and loud protests from parents about public school response to autistic student's IEP requirements being inadequate. I saw parents having meltdowns about not having access to respite care, therapists, and support staff. I have not seen one word from parents who have managed to get their education-related complaints in major newspapers and on television about their autistic children's right to access COVID-19 testing, treatment, and their right to survive. That lack of interest actually scares me.

There must be other parents and primary care providers asking what will happen to their children if they contract the virus? Has no one else asked why no parent-driven autism organization is coming forward with emergency planning advice for how a single father or mother will manage if they get infected? Does no one lose sleep over the nightmare scenario of watching them wheel patients to isolation wards, and those patients never seeing their loved ones again?

I have been asking myself things like what should our community be doing to focus attention on the equal right of autistic people to access testing and health care for the duration of the pandemic? What will the greater disability justice community be doing to find ways of opening spaces for our loved ones to access health support for conditions requiring health support unrelated to COVID-19?

We needed to get COVID-19 related scripts for health advocacy on AAC devices in February. Why didn't autism organizations reach out to speech app software developers and SLPs about this? We need to discuss countering the idea of hospitals considering blanket do not resuscitate orders.  Can our organizations join to create homemade masks for primary care, respite, and other staff supporting our offspring? Why has no organization created a video that shows our kids step by step how to wear masks, explain social distances, and explain not touching a hand to face in a manner that is age-appropriate? There is so much that we can do within our community to reduce stress and increase hope but this needs to be organized and executed jointly. I know everyone is in shock but no one seems to care enough to do this for our community when so many others have come together to act on behalf of other high-risk populations. And what I have seen in Op-Eds this year is the usual causation arguments, sales pitches for fundraising, writing about our children as if they were overgrown violent infants who tend to stray, and lamentation of parents instead of needed crisis information and support.

My last and greatest concern is access to family therapy for families with autistic children who seem to be struggling to manage their offspring at home full time. This may not be an issue for families like mine who have been home educating for years. But in families who spend very little quality time with their autistic children between school, aftercare, therapies, and spring camps, the shock to both the autistic children and their parents is taking its toll. In normal circumstances, the number of filicides is too much. This added stressor may make things that much worse.  Judging from the rise in domestic violence in France since stay at home orders were given my concern that similar harm may come to autistic children and those forced to shelter in place with families that have immediately begun complaining about them being themselves seem valid.

I love my son. I want to be more hopeful about my son's chances to weather this pandemic and survive. That can only happen if our community comes together in greater numbers to champion our autistic loved ones right to survive it. Their survival is much more critical at this moment than just about everything else happening right now. Shouldn't autism organizations be putting that first?

Power, Disability, and The Realities of Consent

Image of Mu, a Hispanic presenting biracial child at age four with short wavy hair wearing a maroon T-shirt, his head
resting on the blue metal rung of the slide he is climbing at one of his favorite playgrounds. Tennis courts can be seen in the background. Image posted with permission of the subject: ©Kerima Cevik 

Over the past decade, I frequently posted the same few photographs of my son on my blogs and social media, and people would occasionally ask why I didn't post more. There are photographs of my son that he likes, and images he does not like. Sometimes I like images he does not. However, I do not have his consent to post the ones he does not like, even if I think my preferences matter. I now ask my children, both the adult and the disabled teen, for permission before I post any photos of them on any public forum. It isn't something I gave enough thought to before the arrival of this age of deep fakes/extreme photo editing/child predators/online stalking/revenge porn/etc, but it is something I am really concerned about now. I spend serious time agonizing over these questions:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Peace.

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