AutisticWhileBlack: The Case of Aisha X

Stock image of a mother and
Infant son.

What does an African American Muslim woman do when several years into a legal battle against an abusive ex with documented deep seeded rage issues for custody of her firstborn son, she learns her younger son is autistic, she is autistic, and she lives in a county where the Family Courts have a researched and documented bias against women in family court cases?

The relief of finally understanding who she is is crushed with fear of yet another layer of retaliation from both the devout Christian family of her ex, who never approved of her and a court that now has ableism to add to their bias against her.

This is Aisha X's dilemma.

Aisha X, given an alias here to protect her from further retaliation, is alone at the intersection of public policy, racialized ableism, structural misogyny, and Islamophobia.

Aisha is one of the many Maryland women who have lived the reality of a system in which family court has favored her son's abusive father over her, as DCist/WAMU reported in research here: https://wamu.org/story/19/08/19/fathers-are-favored-in-child-custody-battles-even-when-abuse-is-alleged/ and NPR reported here:https://www.npr.org/local/305/2020/07/29/896692057/lawmakers-and-experts-recommend-changes-to-maryland-s-child-custody-court. All of which led Maryland State Senator Susan Lee to draft Senate Bill 594 in 2020 here.

In July of 2020, NPR published a DCist/WAMU report of research that showed Aisha X's case of a judge favoring her son's abusive father over her in her custody battle was not unusual. The study found that judges favored fathers over mothers in custody battles over children in Maryland–even when fathers were accused of or found guilty of abuse. Quoting NPR:

Professor Joan Meier at George Washington University Law School, and other researchers, provided data supporting the group's recommendations. Meier's research shows that when a mother is accused of alienation, she is twice as likely to lose custody compared to when she is not. But in cases where a father claimed a mother was pitting a child against him to disparage his character, Meier found a judge ruled that the mother's claims of child abuse were unsubstantiated. The study looked at more than 2,000 custody cases involving child abuse, domestic violence, and alienation nationwide.

In Aisha X's case, her diagnosis and faith differences were weaponized to push things in her abusive ex's favor. Her fight for custody of her son is an uphill battle that continues as I write this.

Ironically, in 2016 Maryland Bill SB 765, CINA, Guardianship, Adoption, Custody, and Visitation - Disability of Parent, Guardian, Custodian, or Party, was signed into law.

On paper, the law is supposed to protect disabled parents from discrimination in child custody disputes. Disability Rights Maryland praised the bill's passage as follows:

SB 765 will protect people with disabilities and their families from discrimination in private custody, visitation, adoption and guardianship proceedings by requiring any findings that a person’s disability affects the best interest of a child to be recorded in writing; allowing the party with a disability to show that supportive parenting services would prevent such finding; placing the burden of proof on the party alleging that the disability affects the child’s best interest; and conforming the Family Code definition of “disability” to federal law. DRM was pleased to work with National Federation of the Blind, People on the Go, The Arc Maryland, Maryland Association of Centers for Independent Living, other members of the Maryland Disability Rights Coalition, the National Council on Disability, and bill sponsors Senator Jamie Raskin & Delegate Sandy Rosenberg on this groundbreaking legislation.

This bill was created and initially championed by the physical disability community. Despite being meant to protect all disabled parents and preserve their families, its promise in practice does not seem to be helping those with invisible or intellectual disabilities like Aisha X. Her decade long fight was further complicated by her late autism diagnosis. No organization in the autism or disability justice community has stepped up to help her fight for her right to be the custodial parent of her firstborn son. 

One of the unspoken realities in the autism conversation is that many parents of autistic children are diagnosed late. Especially BIPOC women, who are too frequently overlooked or misdiagnosed, can live for years not understanding their disability is ASD. Some African American parents go undiagnosed until one of their kids is diagnosed or they recognize certain traits in themselves that leads them to an eventual diagnosis. Yet neither disability justice groups nor any stakeholder in the autism conversation has expanded their circles of support to include adults like Aisha X and their families. Like many autism-related service systems, legal services are early intervention and childhood centric. Proper legal representation from a team that understands autistic adults can mean the difference between losing one's custodial rights and keeping them. A judge not having any clue about what autism is and how it impacts a plaintiff can see direct responses as brusque or rude. This escalates bias against autistic parents in court.

But here's the critical point of Aisha X's late diagnosis. A competent parent doesn't suddenly become incompetent when they are told they have always been autistic. Systemic ableism drives systemic presumptions of incompetence, and that injustice can lead to courts missing the obvious red flags of abusive nondisabled spouses/ex-partners wanting sole custody of children and ruling against disabled parents.

Ernestine Bunn Dyson, Doreen M. McClendon, Yvette Cade, Freda Edwards, and Jackie M. Lewis were victims of domestic violence who were failed by Prince George's (PG) County's court system despite laws supposedly put in place to protect them and their children. Yvette and Freda were burned alive by their abusers but survived. Ernestine, Doreen, and Jackie were murdered. All reported physical and emotional abuse to authorities, some of whom either dismissed the signs of abuse or claimed they didn't have sufficient cause to justify restraining orders.

Possible Faith-Based Causes of PG County's High Domestic Violence Rates

Aisha X's case was initially being tried in PG County. One cause of this ongoing issue of high rates of domestic violence put forward by Christian community activists in PG County was that biblical scriptures were weaponized to justify the demand that women must be submissive to men. This concern led to local clergy deciding to work within church congregations to clarify the scripture to reduce the amount of faith-based domestic violence in the County. But this approach to the County's systemic domestic violence issue is exclusionary and limits the scope of outreach to one faith-based congregation. I am saddened that these activists didn't reach out to all other faith communities and humanist organizations, meet with domestic violence victims and make transformative change an inclusive, county-wide process. Notably absent in these efforts was any mention of disabled women like Aisha X, who experience domestic violence by an intimate partner at higher rates than their nondisabled peers.

Activists, by definition, should be at the vanguard of informing and training members of the Family Court system about the high rate of domestic abuse of disabled women. But if faith-based bias is already in the decision-making process of a judicial system, what hope do Aisha X and others have of being believed, much less arguing their cases?

 A recent judgment by A Texas judge who ruled coverage of anti-HIV medicine violates religious freedom is a grim reminder that far-right groups have negatively influenced our justice system. This shift in the bias towards cases arguing for religious freedom superseding the human rights to healthcare and a safe family environment for women and children defy secularism as the law of the land. These increasingly extreme and unpopular court decisions debunk the myth that family preservation is an excuse to deny women in PG County restraining orders and the right to be custodial parents of their children. 

In cases like Aisha X's, where two parents fighting for custody don't share the same faith, but an abusive parent and their family may share the same faith as people who play critical roles in the Family Court system, bias can destroy the case before any judicial decision. Little things, like deliberately sending a court summons to the Muslim parent's old address, can cause that parent to look as if they are irresponsible.   Religious freedom, one of our Constitution's founding principles, was meant to allow all religions or nonbelief to exist without the persecution religious groups fled from in the first place. If those who drafted the Constitution wanted to declare the United States of America a Christian nation, they would have stated that in the document. 

The right to practice one's religion or no religion isn't meant to be used as a misogynistic cudgel. And yet Aisha X's situation is another example that the weaponizing of any belief towards a bias against marginalized people is a violation of the human rights that were supposed to make the American experiment singular in its humane approach to its citizens. 

Aisha X and many others are caught at the intersections of public policy, religious misogyny, the hierarchy of disability bias in public policy practice, and systemic ableism. Aisha X's case is so shocking that I am considering supporting a mutual aid drive to raise funds for her continued fight to gain her custodial rights. 

Update:

Here is the link : 

https://www.gofundme.com/f/9q3wq-please-help-me-reunite-with-my-child?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf+share-flow-1

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: 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.