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: Seventeen

Image of a tall, multiracial Latinx presenting male with black cropped
hair, a thin mustache, wearing teal and blue striped polo shirt and
black slacks. He is holding an iPad AAC device in his hand. Image
posted with permission of the subject. Credit and Copyright Kerima
Cevik.

Our son is seventeen. He used to enter the month of December gravely ill every year, but we managed to overcome that for so long that this year when he became ill again, it was a shock. The shock reminded me that my nearly completely grown-up son, with his ancestors' looks and a mustache that is the envy of his teen peers, is still very much disabled.

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

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

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

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

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

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

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

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

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

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