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: Diezel Braxton And Becoming Indistinguishable From One's Peers

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

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

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

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

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

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

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

A parental declaration tantamount to a demand that Diezel should not display any sign that he is autistic has been issued for public consumption from a mother who has no understanding of being autistic except to view her son's brain as an enemy he must fight and defeat. Is telling your adult son to hate his own brain and how it works a good thing? This sounds more like the very definition of how internalized ableism happens. 

Toni Braxton would not tell her son that his melanin and hair are abhorrent things that he must combat and chemically suppress so he can be "indistinguishable from his white peers." I wonder why its okay to tell him to hate the nature of his own neurology? Most of the innovations, discoveries, and creative artistry in this world came from neurodivergent minds. Nina Simone was bipolar, as were many other great musicians. Many creative people are autistic.

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

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

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

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

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

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

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

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

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

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

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

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