Crenshaw1 identified the term intersectionality to emphasize that identity intersects across many dimensions, including race, ethnicity, gender, sexuality, age, ability, class, religion, national origin, etc. The term intersectionality emphasizes that identities intersect to affect our experiences and behaviors in relation to inequality, injustice, exploitation, and oppression. Thus, intersectionality offers us a means for analyzing how systems of power and inequality impact individuals, groups, communities, and peoples differently, as well as how these systems and experiences of discrimination change over time and within different social and political contexts.1
Lastly, intersectionality is a powerful tool for effectively addressing inequities. Inequities in autism diagnosis and treatment have been identified for Black, Indigenous, and people of color (BIPOC) and gender minorities.2–5 Intersections of these identities further compound the disparities and have been correlated with experiences of discrimination across a variety of settings.6,7 Intersectionality can help to explain and address the qualitatively different experiences of autistic BIPOC and/or gender minorities. However, there is a significant gap in research that addresses intersectionality and autism.8
Moreover, programs have not been developed to meet the intersectional needs of autistic people with varying identities. In this roundtable discussion, we gathered community members, practitioners, and researchers to think deeply together about intersectionality and autism. They use their collective insights and expertise to identify priorities and discuss how, as a field, we may apply intersectionality theory to autism research and practice.
Dr. Kristina Lopez: Thank you so much for joining us today to talk about autism and intersectionality for this Special Issue of Autism in Adulthood. Today we have brought together a group with expertise on intersectionality and autism. They each come from different disciplines. A number of them are autistic themselves. I am an assistant professor at Arizona State University in the School of Social Work. I identify as Mexican American, female, and neurodivergent, as I have epilepsy. My research is focused on understanding the lived experiences of Latinx families of autistic children and youth, as well as developing culturally informed interventions to meet their needs.9–11 I would like each of you to briefly introduce yourselves.
Ms. Arianne Garcia: Hi, I'm a professional writer. I was diagnosed with autism and attention deficit hyperactivity disorder (ADHD) when I was 25 years. I work through my website to promote advocacy and everything that I come across as I learn it, and then I write about it.
Dr. Ariel Cascio: Hi, I am currently an assistant professor at Central Michigan University College of Medicine. I am a White nonautistic anthropologist, and I do research with autistic people in a variety of settings. One of my more recent projects has been on autism research ethics, including the role of intersectionality in autism research ethics, and I generally use they/them pronouns, but I accept all pronouns offered in love, to take a term from Max Sparrow.
Mr. Bin Feng: Yeah. Hi, I live in Queens, New York. I'm a Chinese immigrant. My daytime job is a computer engineer, but in my spare time, I help the other Chinese families with their children on the autism spectrum. My son is 22 years old, now he's on the autism spectrum and has ADHD.
Dr. Christina Nicolaidis: As the editor-in-chief of Autism and Adulthood, I want to thank all of you for participating in this round table discussion. I am a professor in the School of Social Work at Portland State University and the Department of Medicine at Oregon Health & Science University, an internal medicine physician, and a community-based participatory researcher. I am also the parent of an autistic adult, grew up in an immigrant family, and am neurodivergent myself in that I have ADHD.
Dr. TC Waisman: I live in Vancouver, Canada. I'm an Indigenous Pasifica, Nepalese, South Asian nonbinary person. I was diagnosed as autistic in 2017, at 48 years old. I'm the cofounder of the Autistic Researchers Committee at INSAR, the International Society for Autism Research, and I am part of the Autism Training Academy.
Dr. Lopez: I'd like to dig a bit deeper now. What do you think about the concept of intersectionality and how do you feel it applies to autism in adulthood?
Ms. Garcia: My thoughts on intersectionality as a concept would be that it's a focus of nuance on a macrosystemic level regarding social structure by analyzing microlevel social interactions and seeing how they build and corroborate in each other to create that macrolevel systemic structure that we all live under. The way this concept applies to autism in adulthood to me can vary based on who you're talking about. To me, it applies because of who I am and how I'm perceived. I'm autistic, Latina, and a woman. Before I was diagnosed, I was still treated negatively because of my autistic behaviors, I just didn't have a name for them.
Dr. Cascio: When I think about intersectionality, particularly intersectionality and autism, I think about diversity within the autistic community, because popular culture and research culture often talk about autistic people as White boys and men, maybe of a high socioeconomic status. When I think about intersectionality, I think about challenging that assumption, and recognizing the diversity of experiences within the group.
Mr. Feng: It's my first time to hear that terminology called “intersectionality,” because I'm not on the research side, but it's coming very naturally for me, because when we are talking about autism, we are not just taking about his behaviors—his stimming, his social skills…. He is a person. I treat him as a person with some of his life impacted by autism and ADHD. He is also a part of my family. My family lives in a community. This is how I see my son, “a young man with autism, who lives like almost anyone in our community.”
Autism is not all of him, only one section of him, but from our experience, we always see other people only talking about one section of him: doctors talk about his medicine, occupational therapists talk about his hands, speech therapists talk about his speaking. It always comes to me to put together all information from different aspects and sections. Here, the individual with autism, their families, their doctors, their teachers, their therapists, all like blocks of sections, lots of gaps among us.
This is not the way I want to portray my son. I want all of those combined into one person, that is him. For me, it is a very good concept. And this is the way we actually want it, because we want to see ourselves as part of the whole system. Not only my child, it also includes the family member. We want to reach to all the other sections and work together.
Dr. Waisman: For me, the term intersectionality has a personal resonance. My experiences of the world stem from being multiply ethnic and multiply disabled. So it informs my perspective of intersectionality, really starting with the way that I'm treated by others and the way I feel about myself and the way that I see the world. My experiences of intersectionality are both inspiring and challenging. It's inspiring to me because I feel called to speak up and to remain active and to help to improve the lives of those who are affected adversely by the systems of power that continue to reinforce White patriarchal heteronormative perspectives.
And it also challenges me, because I'm only one temporary voice in a discussion that has no end. It's incumbent upon me to ensure that my voice is heard only as much as it adds to the discussion, while consciously nurturing space for other voices to step into the movement and create change as well.
Dr. Cascio: A lot of my work is in research and research ethics, and so when I think about intersectionality in that context, I think about recognizing that ethical research needs to attend to this diversity of autistic experiences to identify where in the research process we have these assumptions about, for example, maleness and Whiteness, and to explicitly and self-consciously reject those assumptions, and then go forward to create the conditions for full participation of all potential participants or collaborators or research team members.
Dr. Lopez: Could each of you please summarize what is being done in your field relating to intersectionality in autism? What are you working on yourself and what impact do you hope your work will have?
Mr. Feng: We fill the gap between the individual, the parent/family member, and the educational and professional resources. Particularly as a community, for the Chinese immigrant in the United States with special needs children, we know the best way to fill those gaps is by knowledge, we try to empower parents. We also know the best way to empower them is with their native language. We bring professionals who speak Chinese to talk with parents in seminars. We also have sharing among parents, especially with the parents of adult children who can tell the young parents what the future will be like and where to get resources. And also very important, how to suit our own needs.
For example, in New York, we have a project to teach parents how to talk to their autistic children about sexuality and sex education. Sex education varies depending on the culture, community, and individual. For example, Chinese parents are always asking, if my child has masturbation, can this hurt their child's health. The professionals outside the Chinese community don't understand why our parents keep asking this question. In traditional Chinese medicine, we regard sperm as very important in your life system.
We have a quote from many years of history, it says: “one drop of sperm, equals to ten drops of blood.” People would die due to losing too much sperm! The parents worry that their child will hurt their health by masturbating. Without acknowledging this concern, sexual education cannot really reach Chinese parents. What we do is we ask the Chinese medical professionals, either traditional Chinese doctors or we call the Western doctors to clarify that masturbation does not hurt one's health.
Dr. Waisman: I feel like I'm fortunate enough to work with many leading autism researchers who are making space for the discussion of intersectionality in autism research within the discussions of justice, equity, diversity, and inclusivity in education and the workplace. This work we are doing directly affects classrooms, accessibility offices, organizations, policies, leadership, etc. Recently I coauthored an article on neurodiversity-inclusive postsecondary campuses. We asked leaders in higher education to recognize that intersections between neurodivergence and marginalized groups are associated with considerable inequities in higher education that obviously can affect educational outcomes for students.12
Dr. Cascio: We recently did a systematic review to see what people were talking about in terms of research ethics in the literature.13 We found, as you say, TC, a lack of representational justice within the research. A lot of the discussion is about who's excluded. People other than me have done great studies on that and how much autism research maybe doesn't align with the priorities of autistic adults.14 People who are not men, who have higher levels of support needs, who communicate nonverbally, or people who are racial or ethnic minorities in the locations the research is done are under-represented in research.
When it comes to age, it's a little more complicated. Sometimes children have expressed, particularly as they've grown up, that they've been included in research that they maybe didn't really want to be included in. On the other hand, children are especially excluded from research that's about their own perspectives.
Ms. Garcia: I'm not affiliated with an institution, as traditional nonacademic publishing continues to rely on individual social relationships that prevent proper multifaceted intersectional representation. I'm writing a collection of essays based on my teenage writings from when I was an undiagnosed youth. I hope to shine a light on how thought processes can be overlooked when you're trying hard to fit in.
Dr. Lopez: How can we conduct intersectionality research in autism? And how can we research and discuss challenges from an intersectionality perspective?
Dr. Waisman: I feel we can do that by including intersectional autistic researchers, coinvestigators, collaborators, and community members. By asking intersectional autistic community members what research topics could help create positive changes and outcomes for their lives. By uplifting voices from within the community and developing community panels of experts who might contribute to the research and then can go on to develop their own work as knowledge keepers of our community. Lastly, by supporting other intersectional and autistic researchers in their work.
Ms. Garcia: I think that one of the things that could be addressed are the cultural variations of symptom description and presentation and including that in clinical interpretations and expectations teachings. I think part of the issue is that academia, medicine, and most sections of regular people don't share the same language for similar ideas. That poses a problem, especially when you're trying to describe your child's behavior to the doctor. If you see it as a problem with your child's behavior, versus like, “I think something is actually wrong with the way my child responds socially.”
They're a different interpretation of the same problem. The differences in semantics and understandings impact children's outcomes. For instance, Black children are 5.1 times more likely to be diagnosed with an adjustment or conduct behavior disorder.15 Those disorders don't get individualized education plans, so they're missing out on their education because people think the child is misbehaving, not that the child needs help.
Mr. Feng: Among autism research in the United States, there is very very little about the Chinese community. I don't think that the Chinese parents do not care or do not want it. It's because there's always a gap between “what do we need” or “what do we want to hear” and “what do they want to ask” or “what do they try to ask?” Language is a barrier. If you speak their language, they can open their heart to you. You must know about timing because lots of immigrants also have to work to survive. Other one is you must talk about the practical issue like where to get resources. That's what I feel we can do together, the autism community and the academic research.
Dr. Cascio: Yeah, I do want to reiterate that working together is so important. Having collaborators and the community engaged in research or in the identification of research priorities is very important for conducting intersectional research. I hope the field of research ethics is going there. I see some good work being done in that field around inclusion, whether that's inclusion at a participatory level, including the community learning these things from local experts like Bin, who knows what the priorities are or what the specific concerns that people might have are or the things that might be a bad approach.
Researchers may feel vulnerable a lot of the time and it makes it harder for us to recognize the power imbalances. Researchers need to be very self-reflective of that and lean into that vulnerability. Working with communities helps with that. Leaning into the discomfort that people might not trust researchers is important. There are good reasons not to trust researchers. We need to be proactive in showing that we want to learn from whoever we're approaching. I at least try to put out, “here are six or so things I know I can do for accessibility.” We can improve intersectionality in research—and research on intersectionality—by just creating an open space with structure.
Ms. Garcia: I think part of the vulnerability that you mentioned is good to point out because I think that the same level of vulnerability exists with health care providers and whatever they're going through. I think sometimes the hesitation to provide information, different expressions of pain, different reactions to pain, or even just reactions to invasive questions; can come across as hostile by autistics, instead of as a trauma response when we are feeling vulnerable. And yeah, you're right, it involves taking back your own personal power, which would have to be on the onus of the academic or the health care provider or the institutional representative.
Dr. Lopez: How can we integrate intersectionality into practice as well? Also, how does intersectionality influence society?
Dr. Waisman: I feel very vulnerable as an intersectional autistic researcher, especially somebody who came into research quite late and was diagnosed quite late. I feel strongly about making sure I'm representing my intersectional communities well…and getting it right. Within our social media autistic communities, there can be a lot of, not necessarily judgments, but questions around why I'm using certain language, why I'm not focusing on certain things in my research, and why I am not representing specific hardline perspectives. There can be a lot of pressure and a lot of stress that leads to an increase in my personal anxiety. And because there aren't a lot of us out here with multiple intersections in autism research, it makes it very difficult to find community and to be honest…it becomes difficult to stay in the research field.
Dr. Cascio: I teach medical students. I really try to stress two things to my medical students about intersectionality and practice. The first is cultural humility. I want them to think about their own intersectional position in life. And many of them are very good at doing that, are very reflective, have thought about this a lot. That's where I try to start. It comes up in medicine and in research. Also, this assumption that doctors and researchers are nonautistic, for example, and that is certainly not the case. It is for me. I am not autistic, but I have autistic colleagues. Part of that cultural humility approach is to challenge the assumption that there's only one way to be a doctor or researcher.
The second thing for how students should use intersectionality and practices is to ask questions. I think that asking questions of their patient is the single most important thing they can do to see where someone is coming from, and to ask similar questions of most people. Part of the challenge comes when people only ask certain people, certain questions.
Mr. Feng: Recently we have some occupational therapists working with us that is very good. We ask them to treat the parents as partners, not just a client, because if they teach us, then we can do the same, mostly at home. This is our goal because our common goal is not only my child's behavior at school, but also at home. But what happens now is very frustrating because they don't seem to have time to explain everything to you as a parent. But if we are treated as partners, they will teach us and work together.
Dr. Waisman: I feel we could be privileging intersectional and autistic voices in classrooms for professionals such as medical students. When we're discussing the kinds of care that we're giving, bringing in individuals who are willing to answer questions can normalize what it means to be on the spectrum. We are more able to teach professionals about our perspectives, our experiences positive and negative, and how we want to be treated. In this way, medical professionals are not just learning things from a textbook or research. They're learning about autistic intersectional people from real people.
Ms. Garcia: It's important to be aware that the patient may have experienced medical trauma and then be sensitive to that. The little comments can go far, and the patient thinks about them for so long. Over time doctors tend to forget the power imbalances Ariel was expressing. They don't realize that maybe somebody that they consider their peer would ignore these little comments, but not their patient. Their patient is paying them for their specialty and their knowledge.
Little comments go a long way to leaving a bad taste in people's mouths. You look fine to me; you're communicating fine to me now. Your put-togetherness is used against you. Where you ask yourself, “Do I have to show up in my dirty clothes in order for you to think that I need serious mental help?” Awareness that a patient may have experienced medical trauma in any capacity is something doctors need to be sensitive to.
Dr. Cascio: Yeah. I appreciate how you said that they forget the power that they have. And we, I mean, because I would say researchers as well forget. That really resonated with me as a way to bring that point, I was trying to make earlier, to remember that actively.
Ms. Garcia: I think that since this is literally something we just started doing as a society that any kind of projections on it would probably be too idealistic. The light being shined on intersectional approaches means the light being shined on multiply marginalized people, which means that the people who are trying to hunt them down, and this is real, they find them and it's scary. There are people that do exist with bad intentions that are evil. And they're in positions of power where they can hurt. They're like, “Oh, kids with conduct disorders and adjustment disorders, don't get IEPs. Hmm, I'm a racist.
What can I do with that information? Every time I get a black patient, I can diagnose them with that. And I will know that they won't get an IEP.” You always run the risk of the opposite thing happening when you talk about these things. You have to plan that they're going to happen. There's no way you reach this macro level of systemic injustice with there only being one malignant doctor or one malignant researcher or one malignant anybody. No, it's multiple people in these aspects of… In these positions of power. We have to talk about just being aware of a power, its power imbalance, when we're talking about a power structure.
Dr. Waisman: This is such an important thing that you're saying. And it leads back to what I said about being an intersectional and autistic researcher and holding myself to an impossible standard. I have a fear in the back of my mind when I'm writing that wonders if I am going to be attacked for an opinion I offer. There have been a few times, even in the past 6 months, where I have been attacked and I feel “why am I continuing to do this?” I'm trying to do good work in the world, but if it's going to mean my personal mental health is at stake, then I just can't continue. The more we energize as a movement, the more the intersectionality approaches begin to influence society in a positive way, the more we can attract negative energy.
It takes a lot to stay in the movement, stay focused, and stay strong. When we're talking about how we're influencing society, I feel it's about educating about diversity. That includes neurodiversity and inclusivity. That includes disabilities. I feel there has been an increase in inclusive practices in research, education, and in work environments, but I ask myself what's next? For example, I'm thinking about the Black Lives Matter and the neurodiversity movements looking forward. How do we move the conversation further? I don't have answers, but for now I'm willing to ask the questions and do the best I can to keep moving into action.
Mr. Feng: I'm very touched to hear those words because, for me, learning from my child's autism made me realize that all human beings are so different and have their own value. When I think about intersectionality, the first thing in mind is, “it'll take a village to raise a child.” This is, really, same thing for us. We have to make a good circle of support for people with autism. For example, my son has his job coach, a care manager, employment service support staff, and a psychiatrist there. Many people coming from different sections of society.
As a parent I want to make a good team where each member understands him and his weaknesses and needs. For me, intersectionality is very natural. We want to build a community around my child in which everyone understands what he's doing, what his ability is, what his potential is, so we can help him achieve as much as possible, utilizing the different sections of society to work together.
Dr. Lopez: What do you find most interesting or useful in this discussion so far?
Dr. Waisman: I think, building on what you were saying, in terms of the kinds of power and systemic challenges that we have, just the conversation around cultural understanding and being aware of what we bring to the table in terms of our privileges…I thought that was really important. It was so meaningful to me to hear that comments go a long way, and that we really need to remember that the effect of one word or one statement on a person can be really impactful, whether we mean it or not; whether it's just a passing statement or not. There were many wonderful things in this conversation, so I'm just going to start with that.
Mr. Feng: One thing I particularly feel very encouraging is that we always know that we have people from different levels of the society, researchers, academic advocacy, all different professional levels. We always tell the young parents, “You have hope coming from the whole world, the whole society, academically, medically, therapy. There are lots of people who try to help us.” And this is one very important thing. It gives millions of families with autistic children a hope. Of course, even we see lots of research done for Autism, but to our families, it still seems far away from our needs and our hopes.
As parents, as a community, we try to reach out to all the researchers. And we welcome all the academic researchers to our community. We try to connect young parents with the right people who can really help. And especially for those chances like today, we can see all the different aspects of people. Their different perspectives, different, obviously, background.
Ms. Garcia: I felt like the most interesting or useful in today's discussion was all the different perspectives of the same system that we all participate in, with regard to autistic people and how our various different support needs are not met throughout all levels of this system, and how we have to rely on communities, such as people like Bin. And then, we have to rely on individuals in research, like Ariel and TC, to represent what they've seen in a way that can be translated to people who don't have the same power of being able to see a human as a human, which is just mystifying in and of itself.
But the fact of the matter is that we all are living in a system that has forgotten that we're all people. Just the coming together and being able to see that on the researcher, and academic side, and medical side, that there is a level of vulnerability and anxiety that does sometimes accidentally project into and create a power imbalance.
Dr. Cascio: My main takeaway was from the nonautistic researcher perspective. I might be nervous about this research interaction because I'm going to talk to a stranger, but the stranger I'm talking to may be nervous about this research interaction because they have been harmed by research in the past in ways that impacted their ability to get an education, to get a job, sometimes even more than that. I think this idea of just remembering is a lot of what I'm talking… Like memory as an active practice. Not just a factual, do I remember or not, but memory as a skill that researchers can integrate into this practice.
I think, also, Bin's example of asking the occupational therapists, “I don't know what you do. Can you tell it to me?” A great example of flipping the question because, sometimes, it's the professionals, it's the researchers, it's the doctors who are asking all the questions, but also need to ask ourselves some questions.
Dr. Lopez: Lastly, should we be promoting intersectionality approaches to autism research and practice? If so, how?
Ms. Garcia: I think part of the issue with intersectionality is that you have some people trying to turn it into a buzzword where they cloud the meaning and it gives other regular people the wrong idea. And then, you have the other side of that where you have people who overextend the meaning and try to insert it in places where maybe it doesn't quite belong. I think that the way that we talk about it as a society needs to be adjusted. And we need to include more words because intersectionality and critical race theory are just four words.
And they are four words to describe decades worth of essays and interpretations across academic departments. And they have been read, and interpreted, and reinterpreted, and taught to other academics, and reinterpreted again among peers. And they have been cultivated finally, okay, we think we're ready to present this to society. And then, society takes it. And it's just like, no, because they don't really understand what it is.
Dr. Waisman: Yes. By adding intersectionality requirements to research grant applications, by asking our fellow researchers whether they are viewing their research through the lens of intersectionality, and by challenging our research community to consider whether their research could benefit from an intersectionality approach, we could support intersectional perspectives in research.
Dr. Cascio: Initially, I would've said, “absolutely, we should integrate intersectionality into autism research and practice. No advocacy without intersectionality.” Intersectionality as a concept was really important for my social development and engagement with feminism, which is a lot of where this comes from, is Black feminist theory. Having listened and participated in this conversation, I think it's a lot trickier, because there's other priorities like safety. Intersectionality approaches, I still cautiously say yes, but with more attention to the caution, perhaps.
There is responsibility for the people who are in positions of power, even if we have trouble recognizing and remembering that power. I still think that humility is a good strategy for grappling with both having power and not. Because the way people are using intersectionality theory right now—whether that is right or wrong—they say, “we're all located at various intersections in the nexus of power, and I may have power in this way and not have it in another way.” Whether or not someone has power is another issue, but I'm benefiting from power structures in some ways. And I am oppressed by power structures in other ways. I think intersectionality theory can help us recognize our own power and how to use it to dismantle the power structure.
Dr. Nicolaidis: Kristina, you're an intersectionality scholar in your own right. In my interactions with you, you've been very thoughtful about actual intersectionality theory, pointing out that it's not just an additive effect of different barriers, but that there's something that happens at the intersection. What's your take on all this? How do you think that intersectionality theory should be used or not used when thinking about autism in adulthood?
Dr. Lopez: The hardest thing is exactly what has been embodied in the conversation—that people can take it and run with it if they're not sure what they're doing. I worry that people will take intersectionality and throw it in their research (just like they do with critical race theory, honestly) because it's become a very exciting thing now too. But if people don't know what the theory actually says, if we don't look at Crenshaw's actual work and recognize what she was saying—that there are people who have this identity, that identity, and at the intersection, they are qualitatively experiencing the world in a different way and are being oppressed in different ways.
If we don't acknowledge that and research them from that lens, we are still doing them an injustice. I think we need the right people at the table to start the conversation like we have here—different people, having different experiences. Autistic researchers, autistic practitioners, nonautistic researchers, nonautistic practitioners, parents who may or may not have autism themselves, people of different races, ethnicities, genders, etc., as much as possible to have different viewpoints to come together. Cultural humility is at the core when we ask questions of different groups of people, of different individuals.
Dr. Cascio: On what you said about studying people from the position that they're coming from within the intersectional axis of oppression… what I think of when I try to explicitly use intersectionality in my work, a lot of times the way I start thinking about it is thinking critically about the position that much popular culture and research starts from. And a lot of that research starts from the position of young, male, White, high socioeconomic status parents. There're some things that are a little bit less clear or that have changed. I mean, certainly, but that Whiteness and maleness and to a somewhat lesser extent, high socioeconomic status has remained a pretty strong thread for the past 50 to maybe 80 years in autism research. And so, what I think is inescapable is that taking no position is still taking a position.
Dr. Lopez: And I think of the utility of community-based participatory research. So that when I build interventions, I don't take something and adapt it. I really go to the community and say, “Okay, what do you need?” I'm from the culture from which I eventually end up building interventions for. But I still have no idea. I'm not from that family whose door I'm walking into. So I really am like, “I don't know, what do you need?” I have to be honest. Even if I have a culturally informed intervention10,11 that I now take with me, I'm aware it may not be for all Latinx families.
Not everybody even knows what Latinx means. So, I say “Latino” when I go into the community or I say “Mexican American” or “Mexican.” Acknowledging those things is really what's needed along the way, being open and listening to everybody.
Dr. Nicolaidis: What does it mean to have autistic adults and other people with disabilities involved in those efforts? And how do you see intersectionality coming into work being done outside of autism research?
Ms. Garcia: When I first got diagnosed and was trying to figure out where I belonged in that realm, I quickly figured it out that I don't. I'm nobody to most people, I'm a brown girl from south Texas, with strong opinions and a loud mouth. And so, what can I do with that? I can write. That's where a lot of other autistic people are at too. You have a lot of autistic writers because you can criticize everything I say from here to the end of time, but I'm going to watch you try and find a flaw in my writing and you're not going to be able to find one.
Dr. Lopez: You know—and Arianne that hits so much on what I was thinking—they are not present in the literature, in the news, on the screens.16 The image of autism we see right now in media is the Good Doctor. This image is still what Ariel described earlier: the White male who can “get by” so to speak. Yes, he's quirky, he's all those cute names that we can put on somebody with autism, but he isn't this person who may be approached by the police for their behavior. For looking like they don't belong here. For this or that, whether it's their behavior or their skin color or something else.
Dr. Cascio: Talking about Atypical in that respect—the main character in Atypical does have a run in with the police. Yet race is never addressed. And he's White. Even though there are Black autistic characters on the show, some of the first responders are Black and it's just a weird silence of also autistic people of color who are stopped, killed, or assaulted by the police.15
Dr. Lopez: I think there's so much missing. There are people like Ariel doing the intersectional work, but the work is limited to a select few who think critically about the work and understand the work. We really need a broader array of work published and put into practice who understand the nuances of intersectionality. However, I don't think that people are acknowledging the injustice factor highlighted in intersectionality.
Dr. Cascio: That's the other thing that always jumps out to me about cultural humility. Tervalon and Murray-Garcia17 started coining this particular term, which itself was drawing from other movements around the beating of Rodney King in 1991. This isn't new anymore. There are certainly ways where this gets tricky with disability and accommodation and diversity, equity, and inclusion, both being in many institutions. But there are many alliances and allegiances, whether that's between individuals, between institutions, between grassroots movements or things, things that are somewhat in between individual and institutional.
Mr. Feng: I think the cultural humility concept, to myself, is exactly the journey we get to know Autism. I always say, as for Autism, I am growing up with my son. When our first doctor said, “Oh, your child has autism,” we first tried to change him to be a normal kid. Whenever his behavior showed Autistic traits, we tried to fix him. But then we found out that's not possible for autistics. We don't need to do that. He is a different kid. He has different needs. So, he can be different. We realized that we have a different child.
He can do many things in a different way as long as he is not bothering people. But to be different is also very vulnerable because you are a very easy target. For example, right now, I'm still driving him to work and picking him up from work because the New York city public transportation system is very dangerous, especially for Asian people. I cannot leave him alone because when he takes a bus, he will stim and everything. Everybody knows that he's vulnerable. If you are a minority in the mainstream, you're not in a very comfortable position. But I live in Queens, New York, where you get people from all over the world.
There are probably more than 300 languages. To be different is normal here in New York city, everybody's different. For me, here is the best place for my son to live because he is living among totally different people. Nobody cares as long as they are not bothered. An ideal world, for me, for my autistic child, is that I want a place that, says, “okay, he can be different.” He will be different for forever. I think that intersectionality is my ideal world, that my son and people can be and think differently for themselves, but also found their own values and contribution in our community.
Dr. Lopez: I want to thank each of you for joining us today on the roundtable to discuss intersectionality and autism in adulthood.
Throughout the discussion you have identified important lessons for researchers and practitioners as they integrate a more focused perspective of intersectionality into autism work. Here are some of the key takeaways I heard from today's discussion:
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1.
Intersectionality must be clearly defined and situated within Crenshaw's original work,1 before including it or applying it in research and/or practice.
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2.
Intersectionality is personal and requires vulnerability by researchers and practitioners.
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3.
Relationship building and valuing are essential to intersectional work.
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4.
Cultural humility and self-reflection are inter-related core practices of intersectional work.
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5.
We should be asking the questions and not making the assumptions; leaving space to be asked questions by patients is critical when working with individuals and families.
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6.
Power imbalances between participants and researchers, patients and doctors, and families and services providers must be considered throughout research and practice processes.
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7.
Going to diverse autistic communities, uplifting voices from within and developing community panels of experts who might contribute to the research and then can go on to create their own work for themselves as knowledge keepers of our community are strategies to enhance intersectionality in autism work.
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8.
The field of autism has not yet included intersectionality well, whether in research or practice. Without using this lens, the field has been inequitable in providing support to BIPOC autistic people. It is evident that intersectionality is a key theory from which the field of autism in adulthood can enhance inclusivity and equity in research and practice.
Author Disclosure Statement
No competing financial interests exist.
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