Hi. So I want to thank you for inviting me to be in conversation with you. I'm excited to get the opportunity to speak with you about my research. The title of my talk is Protective Diagnosis, a Black Mother's Response to Structural Violence and Disability. My name is Stephanie Parks, and I'm a doctoral student at UCLA in the Department of Anthropology, where I work with Black families that have children with autism. The impetus for my work is my lived experience as a mother of two. My oldest child is diagnosed with autism. My son, Del, was diagnosed in 2009 around his fourth birthday. Del spent seven years receiving various therapeutic services such as ABA, speech, occupational therapy, and et cetera. Throughout the process of diagnosis and long-term therapy, it felt like I was consistently a bridge between two different worlds. The world of learning the biomedical terms, the language of autism, expectations of clinicians, educators, and disability within white spaces. And there's also the world of our family. I was explaining why Del was doing so much therapy and what types of therapy and the benefits. Our extended family was unfamiliar with the demands of Del's label. However, Del's label was not necessary for our family to recognize his needs, support, and love, and include him as a valued member. From my experience as a Black mother and graduate student has taught me that too often when we're contemplating the reasons for why Black folks don't attend to biomedical standards, we center anti-Black assumptions about the lack of education or other perceived deficiencies. Throughout Del's life, post-diagnosis, I found that of all of my support systems that I have access to, Black families with autistic children are consistently the most knowledgeable about special education, access to therapeutic services, and parenting strategies that support our specific cultural needs. I hope that Black people, especially the Black families that I work with, feel loved, valued, respected, and thoughtfully represented in my work. So for today's talk, I'm going to present some data from a few parents in my study. We're going to think about families' epistemological understanding of autism, care of their children, and their experience in the world. We'll start with a protective diagnosis and then work our way through a couple of different examples. Now, this discussion will center on the narratives of three Black mothers that have children with autism. I'm going to be talking to you about racial inequities that Black families face when raising a child with autism, which I categorize as structural violence, and how these parents attend to the structural violence that their children face. The narratives include the ways that family history and Black Americans experience with structural violence has shaped the parenting experience and understanding of what's possible for our children. I'm going to give you some definitions to work with, but first I need to do a bit of housekeeping on behalf of the APA. So funding for this initiative was made possible in part by this particular grant. The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services, nor does mention of trade names, commercial practices, or organizations' compliant endorsement by the U.S. government. I just want to remind you that your time spent with me today is CME accredited, which you can refer to this particular slide and figure out how to get access to the credits. Now, I'm going to advance my slides. So how to download handouts. Now, to get to the slides for this particular presentation, you'll just need to go to your desktop and use the handouts area of the attendee control panel. You'll use the instant join viewer and click page symbol to display the handouts area. And how to participate in the question and answer. Now, at the end of this, if we have time, I'm happy to engage with you in answering any questions that you might have. But to be able to do that, you'll need to use the questions area of your attendee control panel, followed by clicking the question symbol to display the questions area. And one final disclosure that there are no financial conflicts of interest to disclose. So now that we've done all that, we can get back to the information. So some background information on the study, I think that might be useful for you. I spent 10 months during my master's and now several years as an assistant professor. That might be useful for you. I spent 10 months during my master's and now several years working on the following questions. What does raising a child with autism look like in the everyday practice of families? And by every day, I mean the small Monday moments in the home, such as dinner and unstructured family time in the community and spaces like swimming lessons or church, as well as those specific disability moments in the clinic and at IEPs, et cetera. And how do we navigate white hegemonic norms of disability and autism in particular? How do we experience disability in intercultural settings? Now, as an anthropologist, my main method for research and collecting data is by ethnography, and that includes participant observation. And ethnography via participant observation for me looks like living and being with people in spaces that are not structured by the researcher, such as time in the family home, community events, and other typical everyday life activities. And I do this for long periods of time, as do most anthropologists, from 10 to 12 months on average. And some people do this for years at a time. For my study and with my given positionalities, having in-group membership, a mother of a child with autism myself, my family was more often than not a part of my everyday fieldwork, meaning that they would play with the children of the other families that I was working with, or we would mother each other's children and feed each other's kids lunch and take each other's children to swimming lessons, and it was a much more intimate setting and really was quite lovely. Now, it's also true that I also spend time doing structured interviews, but they're not explicitly controlled by the interview, meaning that I might go into an interview with a plan. I definitely go in with a plan and some questions, but the interlocutor can certainly deviate from that, and I'm unlikely to stop them. Sometimes those side conversations are really informative. So I'm interested in how families talk about, understand, and connect with the intersection of race, disability, class, and other social identities. I pay close attention to interlocutors' use of narrative storytelling as a means of understanding their autobiographical truths, and I believe that families are the experts in their experience, whether those experiences make sense to me or not, and the parent narratives I will share with you are from 2016 and 2017, and the data for this talk comes from research that includes a cohort of 20 Black middle and upper middle-class families that have children with autism. The parents in the study range from ages 26 to 57. Children range in age from 2 to 24. All of the parents possess at least one bachelor's degree, with the majority having master's degrees, and there are several PhDs and one attorney. All parents reported having or being middle class. However, one family reported that they did qualify for free and reduced lunches, and these families do live across the country. However, the majority of these families lived within three hours of my field site, which was located in a major midwestern U.S. city. Now, there's a large representation of military families, ranking from staff sergeant to commanders and colonels, and this also means that the majority of the families had access to tri-care insurance, one of the few medical insurances that covers autism care, such as ABA. All families reported having access to medical insurance across the board. And these families in this sample all have the respectability markers, meaning college, marriage, insurance, home ownership, financial stability, all the things that Black people are told, if you do this, you'll get access to the American dream. But as we know, education of class certainly helps, but it's no, in no way, a guarantee that Black families will not face structural barriers. Working with the middle-class college-educated group of families allows me to destabilize research that too often paints our people as uneducated and poor. I'm not arguing that health inequities are not connected to income and education. They are. I am, however, arguing that it's more than that, race in particular. And I also want to challenge you to think about structural violence and how it can and does impact a work that a label does for Black families. Impact a work that a label does for Black children, meaning that labels can, at times, do more harm than good, especially when race and disability are both at play. I'm also hoping that this will help you see the ways that parents are engaging in protection of their children, even when on the surface, it may not make sense according to biomedical standards. So today you'll meet three mothers, Dr. Smith, Patty, and Belle. And they all have different orientations to disability and different ways of engaging with the project of raising their children. But what they all have in common is a hope that their children will grow up and find independence and happiness in their adult lives. So before I get into the data, I think it's important to define racism as it's a constant thread throughout each one of the mothers' experiences. And I know it's a contentious term, but I think it might help to work with it in the ways that Ruth Wilson Gilmore defines it. So racism specifically is the state-sanctioned or extra-legal protection and exploitation of group-differentiated vulnerability to premature death. And because I'm thinking about parenting, racism, ableism, Blackness, and structural violence in particular, I found that the term strategic mothering is a useful concept in situating Black mothers' parenting decisions in a historical, culturally-specific context. And you'll find with Dr. Smith, Patty, and Belle, strategic mothering takes on an extra dimension in the form of making decisions that they believe are life-altering, that will sustain the lives of their disabled children. Dr. Barnes tells us that at the root of strategic mothering is an understanding that Black mothers have historically faced insurmountable odds that force them to make life-altering decisions, which change and adapt over time, ultimately allowing the survival of the Black family. Ah, my slides aren't advancing. I apologize. I see that. Thank you for the heads up. Okay. So ableism and racism permeate these systems, and they exist as barriers in every single social system in the United States. So instead of saying structural racism, that is specific to one problem, I'm using structural violence to indicate the multitude of complications that exist for Black parents and the horrific outcomes for our children that weigh so heavily into our parenting practices. Make no mistake, the outcomes for Black disabled people are more often than not violent. And so Seth Holmes describes structural violence as, um, by structural violence, I mean the violence committed by configurations of social inequalities that in the end has injurious effects on bodies similar to the violence of stabbing or shooting. This is what the English working men described by Fred Ingalls, um, called social murder. Much of the structural violence in the United States today is organized along the fault lines of class, race, citizenship, gender, and sexuality. So what is it that the Black families face and what are these structural inequalities and what does structural violence look like for them? So I'm going to show you and speak about kind of how the structural violence kind of crosses these various ways, right? Um, special education, incarceration, chronic unemployment, diagnostic disparities, and inequitable services. So in the contemporary United States, Black students in particular are at higher risk of being over-identified for special education, but also at significant risk for misdiagnosis in both the medical and educational systems when we're not careful. Racism is used to frame the non-normative, meaning it can invoke a label, but racism can also be instrumental in depriving a child of the correct label. Black disabled students in special education constitute the largest portion of students suspended annually. This begins as early as preschool and Black disabled students suffer more instances of restraint and seclusion as disciplinary actions within schools. And one can hardly fail to notice that these techniques, especially seclusion, are representative enactments of the carceral system in the earliest stages of a child's life. And when special education mirrors carceral logics as punishment, it's no wonder that up to 85% of youth in juvenile detention facilities have disabilities that make them eligible for special education services. However, due to experience, due to miss and under diagnosis, only 37% of these children receive specialized education services while in school. And further still, data on the outcomes of Black disabled students in special education suggests that three out of four of these young people will experience incarceration and or chronic unemployment post high school. It's also important to call out the fact that Black disabled people are disproportionately targets of police brutality. These statistics layer onto the already terrible possibilities that families face in clinical settings. The Black child is significantly more likely to experience misdiagnosis, under diagnosis, and late diagnosis. And if a family can access an appropriate diagnosis, then what do Black are, then they're significantly more likely to experience a lack of access to quality and quantity of services and supports. So what do Black families do when faced with the nexus of disparities across the social landscape? And how should they respond? How do we suggest that they protect their children? And how do we remain such radically joyful, loving, resourceful group of people? Where is hope located? And how do we find the good life for our families? So I want to introduce you to a concept called Blues Hope, coined by Dr. Cornel West. America finds itself looking to its blues people again to provide vision to a nation with the blues. That is a source of hope. Yet hope is no guarantee. Real hope is grounded in a particularly messy struggle, and it can be betrayed by naive projections of a better future that ignore the necessity of doing the real work. So what we're talking about is hope on a tightrope. As my advisor, Dr. Cheryl Mattingly states about Blues Hope, an African-American vision of hope that is not easy commitment to a blind optimism, but an arduous struggle against fearsome obstacles has become part of our national story, though one often hidden from public sight. Now, when one looks at the statistics on the outcomes that Black families with disabled children face, it's certainly a bleak picture. However, as Dr. Mattingly tells us, the struggle is often hidden from view. So grounding my work in the everyday lives of families, those small, seemingly mundane moments, I hope to bring to light the ways that our families practice a Blues Hope. And parent narratives about their experience can both solidify a statistic and destabilize the certainty of this type of data. For example, when studying show that we are experiencing this under diagnosis, what does that mean for a family? What do parents do? What strategies do they enact in light of such a problem? And if we're not careful, the homogenization of Black folks into categories that represent us as deficient and marginalized covers up the tireless work that we're doing, that real work of everyday parenting, the work that points towards a Blues Hope, a hope that acknowledges the terrifying landscape of possible outcomes set before our children. But this is a hope that pushes towards a better collective future for our children and our people. So we're gonna explore the lived experience of one particular family, Dr. Smith. And I'm gonna emphasize that this is just one mother's way of attending to disability. And this data should in no way be generalized as all black people are doing this particular thing, right? Now, with the data on inequities in mind, why would a mother intentionally misdiagnose a child? And how does a misdiagnosis become a protective measure? So Dr. Smith identifies as black, upper middle class, married mother of three. She's also tenured faculty at a well-respected university in the US where her scholarly work in psychology focuses on children with autism. But during one of my many conversations with Dr. Smith, who is originally a subject matter expert for the biomedical model of autism on my master's thesis, she disclosed to me that her son had an official diagnosis of ADHD. But in her clinical opinion, her child was autistic. Now, when my conversations with Dr. Smith began regarding her son, Isaac, Isaac was struggling with life in elementary school and his life according to his mother, Isaac's grades hovered around the mid to low range. And his sensory processing was making everyday tasks like eating and hair brushing a fight at best and nearly impossible at worst. Isaac was having a hard time connecting to his classmates and often felt like he did not fit in with the other students or have any friends. And Isaac showed signs of difficulty in his executive planning. So please keep in mind as I read the following statements, the Dr. Smith, statements from Dr. Smith, the various health inequalities, racism, ableism and adverse life outcomes that black parents face. And what are the tensions? You have to kind of allow yourself to sit in the messiness, the grayness of her actions and your beliefs about her actions. So remember, hope is messy. And I'll tell you that as a researcher, I was taken aback by Dr. Smith's admission. And I had so many questions about why and how she took a specific path for her child. I wanted to know why not autism? What was it about that label? And she tells me, I don't want a diagnosis because it's not relevant because I keep saying, what's the problem? Let's just address the problem. I potty trained him, taught him his colors, taught him everything. He was the first person in his class potty trained. All the other school preschool moms were like, how did you do that? And I was like, the as in a box method? She laughs. I taught him his colors using stimulus equivalents. And so I asked her, why not autism? And she says, I thought what's the diagnosis that we can live with that is a very normal one to have, let's go with that one. And I know how people behave and how they reinforce behaviors. This is part of the problem with labels, the bar drops. And they would lower their expectations of my child. I've seen studies that show how detrimental that can be for students when they have teachers that see them as less intelligent. When it comes to our son, we know he is different and that there's clearly something delayed. But we, Dr. Smith and her husband, well, we just said, we'll handle things as they come to us. And you know the school, well, the school sees them as a kid that can't or won't focus. And I don't really know how intentional all of our responses were, really. But we did intentionally get him diagnosed with ADHD. First with the school, we needed it for state testing. And then I went to the pediatrician. You know, I know how it all works. I know what to say. But Dr. Smith's positionality is clearly unique. Most parents don't have a clue how to potty train much less access to the as in a box method. And when you're a trained PhD level clinician and scholar in autism, you have the privilege of being able to take things as they come because you can indeed access care via your own professional experience. And again, Dr. Smith is able to access data and research to support her understanding of what education will look like for her child if they happen to be diagnosed as autistic. In her words, the bar drops. And she not only identifies how disability affects the gaze of her son's teachers, but she also identifies another ideology that is all too common for educators. The idea that black children can't or won't behave or learn. Ideologies without which Dr. Smith would have been unable to make her argument for ADHD rather than autism. As she states, you know, I know how it all works. I know what to say. So let's look at some of Dr. Smith's thoughts on school. She says, oh, he has a 504 and we're giving him hella trouble now. We are in a school that's 98% white and that's why we're trying to keep these teachers in check. She goes on to say, if I thought special education would serve him, then I would say, yes, give him that autism diagnosis. But I promise you all homeschooling the data on special education is so bad. It can't go back to the special. I can't go to the special education route not until I have to. And I still don't have to. Now Isaac's attendance at a school where the teachers are 98% white affects the way that Dr. Smith thinks about protecting her son, that she has to protect him, right? And she has to protect her child, noting that the teachers being white means that she and her husband must work to keep them in check. So for Dr. Smith, the data on special education being so bad that she's actively protecting her child from it. Like we talked about special education is part of a nexus of structures and a system that shows terrifying outcomes for students that have experienced it with outcomes that include such high probability of traumatic experiences with restraint, excuse me, restraint, seclusion and suspension, followed by incarceration and chronic unemployment. What might we suggest that this parent do? And maybe you're unaware, but for children in special education that are placed on alternative curriculums via an IEP, something that Dr. Smith is working very hard to avoid, a high school diploma is a foreclosed option in many states. When these children graduate from high school, they receive a certificate of attendance or completion in lieu of a high school diploma. And as we know, a high school diploma is the bare minimum for entering into employment within this country. So I asked Dr. Smith, if Isaac is in general education, then she says, yep, and that's where we're working to keep him. That's exactly what we're trying to maintain. So all of his teachers are just convinced that he has ADHD and that this is a focus or behavior problem and that he's really smart. And I'm like, okay, that sounds great. And I'm just gonna give him the closest thing to a normal, successful life that I can. Again, I'm gonna argue that if the structural inequalities within healthcare and disability weren't such that black children are commonly misdiagnosed with behavioral problems, Dr. Smith would not be able to make this type of intervention for her child. Black parents are often fighting for schools not to see their children as having behavioral problems. But in the case of Isaac, the misperception of behavioral problems by teachers is allowing Dr. Smith to keep Isaac in general education classrooms, negating his possible placement into special education, something that Dr. Smith is deeply opposed to. So Dr. Smith goes on to tell me, look, my take is this, and this is just how I feel comfortable, school is a social institution. You go there and you socialize and all of your schoolwork, I will do this with you at home. And I will tell you, I will teach you what you need to know at home because the school fucking can't, and yep, you just go to school and you have a good time and you come home and you work. And again, it's not lost on me that Dr. Smith's very particular positionality as a specialist in autism allows her to teach her child at home. It allows the precarious situation of misdiagnosis to be maintained as a protective measure due to her unique skillset to meet the educational needs of her child. She is, however, not without her doubts. She's concerned about his future and the precarity of her son's situation. And she says, I mean, we're trying to maintain him in the classroom, but I keep asking myself what happens when he starts getting letter grades? What happens when he's coming home with Cs? And I know that if I weren't working with him at home using applied behavior analysis able to support him, he'd have Fs. That's just what it is. And I'm afraid we won't be able to maintain it. Now think about the tensions with school and black disabled children. And given the data on special education, can we really make the argument that there are safe spaces for black students or that Isaac would be better off with a diagnosis that accurately describes the symptoms rather than one that was an answer to insulating him from structurally violent outcomes? And why would we expect black parents to take a path for their children that all but guarantees these unwanted life outcomes? Are these odds you would take for your children? And would you put your children in what's arguably harm's way? Or would you take the route that Dr. Smith is taking as a protective diagnosis? Now, as we're reflecting on Dr. Smith's use of misdiagnosis, the New York Times recently ran an article showing that white and Asian parents in particular were lobbying for ADHD diagnoses for their children to gain access to disability support such as more time on tests and quiet distraction-free spaces for their children to be able to test better. The Dr. Smith's use of a misdiagnosis, a protective measure that speaks to the structurally violent systems that a child faces such as incarceration and unemployment. Non-black families, according to the New York Times, are trying to use disability supports to help their children achieve entrance into top tier colleges. And this is not a critique of these parents, they're right. Children deserve the supports necessary to excel in their academic pursuits. But due to the difference that disability and race can make for a child, white children can find significant benefit from disability support services that help them advance into the most desirable universities. While for black families, disability services can have a significantly different outcome, one that is so bad, as Dr. Smith tells us. I just need my kid to be happy and safe to identify what he likes and move towards it. I wanna help him, but build the skillset to be able to enjoy those things. Now we've talked about schools and the diagnosis and label of autism, as well as the unintended work that it can do for black children. And I think it's an obvious point of contention that health inequities are such that black autistic children are not getting access to supports and services at the same time and same rate or quality as their peers. And most certainly not with the same outcomes. But Dr. Smith's positionality, unique, clearly allows for her to engage in support services, including feeding therapy. And what does that look like for her? And how does she maintain Isaac's placement in the general education setting? How does she hold this all together? She explains to me, every morning we're working with feeding him and the adaptive living skills. And then at night it's Kumon work packets. Kumon is an expensive private math tutoring company. And then his school, I mean, until like 10 o'clock, when we think about him, it's never because our son has a diagnosis, but rather we see a problem. So we just ask, what do we do? It just so happens that everything I recommend to do is behavior management, but we never call it that, but it's what we do. We just say, here's the problem. What does the literature suggest we should do? And that's what we're gonna do. And that's it. This is truly a skill deficit. And I'm always hoping that the gap between him and his friends, well, the support I'm providing him, we just hope it's enough. But there's one problem that I've been thinking about. You know, the autism stuff I'm not good at, that I can't help him at home with, the social skills. For those services, you need an autism diagnosis. And I know that if I took him, let him do an assessment, he would qualify for autism. And Dr. Smith asking, what does the literature suggest as a means of providing support to a child underscores that she is indeed uniquely positioned to make a protective diagnosis for her child. But Dr. Smith is also deeply concerned and always aware of where her skills place her as expert in Isaac's education and care and where she will not be able to maintain a standard of care that she feels is appropriate for him. And as she points out, one day, the maintenance of his education will become impossible and that she can't help with social skills, meaning that she'll have to allow her son to be tested for autism in order to access the services that she herself is unable to provide. Dr. Smith's constant consideration of the best possible good for her child sounds like hope on a tightrope, with Dr. Smith hopeful that she can carefully craft a course for a child that will bring him to a better future. However, a misstep by Dr. Smith could deeply impact Isaac, landing him into special education and worse. So what does Dr. Smith say about her life and how does she experience parenting a child as both a mother and a scholar? And she tells me, you know what the biggest thing is too? You know what's hard for me as a scholar, right? Well, people do these studies and they will show you this beautiful design and say you can teach a kid with autism to whatever, brush their hair, right? Dr. Smith pretends to sound like an expert. It only takes five minutes a day to implement this protocol. Parents can do it, she continues. And I keep trying to tell my students, I mean, that's true. It does only take five minutes a day. That's for the thing that's most important, right? Like when you have a kid with autism, everything is wrong. Like everything, we need help with everything. A bath, a shower, toileting, tooth brushing, eating, everything needs special intervention. Every single thing, everything. It's not like, oh, let me select this video modeling and teach him this one thing and then I'm done. It's like, no, it never ends. And it's exhausting, exhausting. Dr. Smith switches her attention to her son. And so every morning we talk about how we really do it. We have to prompt him. So we're doing less and less adaptive living skills and supports, but like when he was in second grade, I had to have a visual schedule for him. Like you had these things you had to do, breaks built in, timers to help him know how long to brush his teeth. I mean, we've done it all. I've done it all, right? I'm tired. And I asked Dr. Smith, are you getting a break from this? She replies, no, I'm in it to win it. Dr. Smith's resolve in it to win it brings us back to her expressing that she wants a normal, happy life for her child. And for her, this life, this is a life that includes college and the ability for Isaac to choose a career and a life path that he loves and makes him happy. It's an expression of Blue's hope for Isaac, a hope that is not naive, but one that takes on the seriousness and possibilities of failure and continues to fight anyways. And like most parents, she wants the best for her child. However, unlike most parents, she faces an entirely different field of possibilities for her child's life. And if she's not careful and deliberate in her parenting choices, strategically parenting Isaac, a protective misdiagnosis, as it were, her child may very well end up living out these unwanted outcomes. So Dr. Smith's experience is certainly interesting and very difficult. And so I thought I would introduce you to Hattie. Her parenting experiences is rooted in family history, but it still attends to structural violence, but in a different way from Dr. Smith's. Now, Hattie is married to Hal, her college sweetheart, and they are the parents of a little boy, age 10, who was diagnosed as having autism. Our conversations have taken place over many years and across locations, such as our children's swimming lessons and on play dates and in the comforts of our kitchens and homes and eventually over FaceTime. Both Hattie and Hal come from deep Southern roots where they keep strong ties to Canaan culture. Hattie has a graduate degree and works in biomedicine as a registered dietitian and her spouse is working at the highest levels of the U.S. military. He possesses two graduate degrees and they humbly identify themselves as middle class. Hattie in particular has been able to assimilate herself into the biomedical sphere and her work is a registered dietitian as well as in her medical care choices in treating her son's autism. Hattie is a master at bringing together the two worlds of black culture and biomedicine and as she navigates the biomedical services of ABA, OT, PT, speech, and special education, she is polite but firm in her centering of therapy as a skill building support in support of her son's black cultural ways of being. She frames her worldview for raising her son in the experience of having grown up with kin that she identifies as always been different. I'm going to bring you into Hattie's kitchen and on this particular day we just returned from our children's swimming lessons to Hattie's home and we were making the kids lunch. Hattie is an exceptional storyteller and as we're pulling together lunch she starts to tell me about her cousin Tom. Hattie says, Tom would come into her daddy's, Tom would come into daddy's fish market every Saturday. He would have his money and there was a store down the street and he would do some shopping, do his thing, come back, eat lunch, and then say, all right uncle I'm going down the street. We made sure he understood his money. He wasn't the best but he could do it. My daddy would say, now how much money you got? 20? If you go down the street you better come back with 10 dollars. Tom had a girlfriend and my daddy would coach him, Tom now go walk with your girlfriend but don't spend all your money on her. These are things that my daddy would teach any young man. Tom was really independent and I asked Hattie, do you know, did you know growing up that Tom was different or did you learn that as an adult? Hattie says, we just grew up with him so we knew he was different. Tom didn't have a label or anything we just knew he was slow. His mama would make sure he was independent and say things like, Tom I'm gonna drop you and then pick you up at five and if my daddy was gonna take him home Tom would say, uncle what time you going to close up that market? My daddy would give him a time and tell him, you need to be back to help. Even today Tom is still stuck to his routine and he's around 53. So I asked Hattie, I know that you've said that Tom had some type of intellectual disability but do you think that if you were a child today he'd be labeled with autism? Hattie says, yes and Tom seems to have some autism in his routine. Tom's always about his routine and you can't upset that. He'll fuss about it for the rest of the week. You know, my daddy got sick. They had to bring Tom to the house to see him. I'm sorry. Because, I'm sorry, I'm going to start again. Hattie says, yes in hindsight Tom seems to have some autism in his routine. Tom is always about routine. You can't upset that. He'll fuss about it for the rest of the week. You know, my daddy got sick. They had to bring Tom to the house to see daddy because he wasn't at the fish market and that broke his routine. Even when Tom's parents passed, his brother had to learn that it was important to bring Tom to the market every Saturday. Somebody in the family always took him to the fish market. Now Tom had a cell phone and would call to find out what's going down. You know, call an uncle, you're going to have the fish market open. He was very independent in that aspect that I would call life and I learned that from her, Hattie's aunt, Tom's mother. Hattie continues, she, my aunt, always had Tom and his brother dressed to the nines. She always felt like Tom needed to make the best impression because I don't want people to treat him. So she always made sure Tom's clean. Tom understood you press your shirt, you press your pants, you wear a belt, you don't walk around sagging. That just don't go down in our family. Even with the haircut, you keep your hair clean. We've instilled that in our son too. Tom went to the fair like all the other kids. Bible school, line for school, everybody get in line. So there was no difference. But we might have to show him instead of just tell him because he rolled with everyone just like you're going to get in the car, you're going to go too. You go to the store and the kids got money for lollipops, he did too. He was sent off like all the other kids. So when my son came, my daddy said, you make sure he knows how to read and how to count the money and he'll be just fine. The mentality is you just keep pushing because this is how we do. We just keep pushing and it will happen. So I asked Hattie, is this how you've raised your son? And she says yes, because this little boy can and I want him to be independent. I'm going to situate this narrative in history a bit. Tom was born in the early 60s and his family is located in South Carolina. And Hattie's memory of Tom and her family is at a point in time where an autism diagnosis wasn't common in general and certainly not common for Black folk. Yet her family structure was such that in recognition of Tom's difference, they were able to provide education and care that he needed. As Hattie describes it, that aspect that I call life. And her daddy and her aunt made sure that Tom learned how to navigate the world around him by including him into the family structure, the fish market, the church, etc. But Hattie tells us about Tom being included like everyone else. Through his inclusion with all of the children without question, not without supports. As Hattie identifies, sometimes you have to show him and tell him. A recognition of difference that's not stigma but support making the inclusion of Tom possible. Now as Tom's parents and elders pass on, you can hear Hattie talk about her family stepping in. This loving supporting inclusion of Tom within the family history directly informs Hattie's care of her own child. And equity and family support and love of Tom with or without a biomedical category highlights how Black families work from a place of humanization, strength, and resilience. My analysis is not to say that we don't need to support and create equity and systems for Black families. We do. But I argue that spending time thinking about everyday life and the narratives of these families is important. Without this analysis, we would miss the beautiful ways that Black families are loving their children. How in the face of 1960s American white supremacy in the Deep South, a Black family was still practicing hope. A blues hope that didn't negate Tom's needs, but rather did the real work of supporting his future in spite of the systemic racism that his family faced. Because a blues hope is not naive. So the last parent is Val. And if I had to describe her, she's fierce. She's the mother of two children with autism. Her narrative is very short, but it's unsettled me as the fellow mother of a Black autistic child and as a researcher. Val asked me, are you going to focus any of the research on fears and safety? We're worried about his safety. It's like his Blackness is another disability. I practice with my son all the time, a six-year-old little boy. I have him throw his hands up in the air just so he might know what to do if the police stop him. Now in this slide, I've included a picture of Elijah McClain, a young Black man that was murdered by police. As he was being murdered, his last words were, I'm different. He begged for his life by telling the police that he was disabled and had autism. And every family that I've worked with, my own included, has spoken about police brutality. We are not unjustified in our fears of raising a Black disabled child with the specter of police brutality is a very real possibility. This for so many of our families is a worst nightmare. So many of us are doing everything we can, including having an autistic kindergartner throw his hands up, practicing how to keep himself safe from the police or intentionally misdiagnosing a child as a protective measure. It's also a reminder in Bell's question to me, will my work help us? Bell's question has been with me for six years and it informs my commitment to loving my people through acts of active change. And my critique of academia as well as biomedicine is that the focus is too narrow. Black people can be patients in your clinics or participants in my study, but how are we working to change the systems that create structural violence? How does our work help? So what I hope you take away from your time with me today is that Black families do face terrifying possibilities for our disabled children and fight inequity in every system we encounter. However, my research shows that Black families have historically and are currently creating strategies to safeguard, protect, and support our children. But to be able to see these strengths, I also argue that alongside large quantitative studies, there's great value in paying close attention to folks' everyday lives and the mundane moments of families to destabilize and clarify quantitative research data. Dr. Smith and Hattie complicate so many ideologies about Black people and disabilities, such as medical mistrust or that Black people have stigma around disability so they won't diagnose their children. We need to consider that structural violence can create a situation where parent choices become so constrained that they have to creatively rethink standards of care, such as diagnostic labels. They must critically question what unwanted possibilities those labels might evoke for their children. And I want to reiterate that my analysis of Black family strength is in no way means that I think we should not be working towards making autism supports and services readily available or accessible, or the Black families are doing just fine and we should no longer work towards a more just society. I am saying that we have to be careful not to dismiss or hide from view the strengths of these families as we endeavor to raise our children to thrive against all odds. We also need to be critically thinking about why families are placed in these precarious and impossibly difficult positions. It's important, imperative really, to think about the ways that the social world creates illness. In the case of Dr. Smith, how the social world as it currently is constructed is so dangerous that she has to protectively misdiagnose her child. As she points out, it is safer for Isaac to be seen as Black child that can't or won't rather than a Black child with autism that will encounter the social structures that will all but guarantee the production of violent lifetime outcomes. Or how Hattie's cousin Tom and their family navigated white supremacy in the 60s and still found a way to love and care for him without biomedical supports. So powerfully effective was this love that it informs the way that Hattie cares for her autistic child today. Or maybe how Belle breaks my heart by having to teach her kindergartner to put his hands up and mind the police to keep himself safe. As she says, it's like his Blackness is another disability. All of these mothers with all of their similarities and differences are trying to negate structural violence that threatens their children. Yet and still, they're engaged in the blue's hope, a hope that does the real work of strategically mothering their children, making the impossible decisions so that their children can have access to some lifetime possibilities. Like Dr. West tells us, this process of blue's hope is messy. And Dr. Smith's use of a misdiagnosis as a protective measure is understandable, but also messy and how it forces us to contend with class and education, race and disability. Her answer to her child's future happy life is anything but simple. But how could it ever be when she's forced to practice hope on a tightrope? I hope this helps you see that if racism and ableism and lifetimes impacted by structural violence were not the possibility, Dr. Smith would not be in a position to need to protect her son from the label of autism, or that a six-year-old autistic child wouldn't need to defense from the police. And as complicated as it is, I want to encourage clinicians to use their privilege to dismantle systems of oppression that cause violent outcomes for your patients. Take Bella up on her call, do work that helps us. It is going to be much more than the work that takes place in traditional clinics. It's the work of healing societal level social ills, and you're going to need a Blue's Hope to do it. So I want to thank you for your time, and I'm happy to answer any questions that you may have. Yeah, I can go back and explain Blue's Hope for you. I think you look out. There's a slide on this. It'll take me a second to find it. So Blue's Hope, coined by Cornel West, is kind of that hope that isn't naive, right? The hope that leans into the messiness of life, the hope that knows that there's no guarantee for people to like actually achieve these really, you know, sometimes what looks like impossible, impossible dreams, you know? And it centers on like doing work. It's not just us saying, man, I sure hope this thing works out, but it's Dr. Smith like pulling all the data and deciding, well, I'm going to figure this out for my kid, and doing the impossible work of crafting, you know, a misdiagnosis and understanding how that was protective and how she was going to use that amidst all these impossibilities and unwanted outcomes for a child, right? That is kind of what a Blue's Hope looks like. Does that help, Luke? Yeah, no? No? Ebony, I'm unsure that there's any more questions. Do you want to step in or, oh, maybe there's one. What can therapists do? It's not just supporting the work, it's doing the work. You have to use your privilege to dismantle systems. You have to step in and start reimagining a new world, right? Like if special education wasn't the mess that it is, you know, and kids just had access to the supports necessary to take tests and learn in ways that are salient and useful to them, you know, without encountering all of those other problems that we discussed, then, you know, an autism diagnosis would be a much different label than it is, right? Like it would do a lot of different work than it currently does for Black kids. And so, you know, as therapists, like it's more than just, and I'm saying this about myself too as an academic, right? Like it's more than the clinical work. It's more than like me doing the study, right? It's the active in the world work and how we put what we know to use for these families so that they can, you know, take up your suggestions and take these diagnoses seriously and have them like really be the actual safe labels that they currently are not, right? You know, that's a hard answer. I think I get this question every time I give a talk is, what do we do? Yeah, what do we do? It's a real question. So, if you don't have any more questions, we can close the session for today. If we can just show the slide that demonstrates how to obtain CME credit. Absolutely. One second, please. There you go. And I just want to thank you again, Ms. Parks, for your time. This has been such a great session, and we really appreciate the information you shared, and we hope that everyone took away some helpful tips for their practice today. Thank you. I appreciate you inviting me. Thank you all. You all have a wonderful day.

Stephanie Parks

Black mothers

children with autism

racial inequities

diagnosis

therapy

support services

structural violence

educational system