EP 60: Black, Grown and Autistic
We explore what it’s like to be a Black autistic adult with the story of artist, author, and illustrator Ayanna Davis, AKA ‘Phenomenally Autistic.’ We also hear from advocate and autism media consultant Diane Wright, plus special education professor Dr. Jamie Pearson breaks down why Black autistic people are diagnosed so late in life.
The Stoop
BLACK GROWN AND AUTISTIC
Season 6, Episode 10
FULL EPISODE TRANSCRIPT
[00:00:03] Leila Day: Hey Hana.
[00:00:04] Hana Baba: Hey Leila.
[00:00:05] Leila Day: So, when we think about autism, we think about kids.
[00:00:09] Hana Baba: But when you're Black, a lot of the time you won't know you're autistic until you're all grown up.
[00:00:16] Leila Day: And if you're Black and a woman, things can be even more complicated.
[00:00:21] Hana Baba: Today being Black, grown and autistic.
[00:00:25] Leila Day: Let’s stoop this out.
*Voices of The Stoop, intro music: The Stoop. The Stoop. The Stoop. The Stoop. Stories from across the Black diaspora that we need to talk about. My cousins were water and grease girls, and I couldn't be a water increase girl. That's what I'm talking about, ballerina in the hood. We be Gullah Geechee anointed people. When a Black woman walks up to the desk in labour, what preconceived notions do you have about her? I didn't even know we had a hair chart. The Stoop*
[00:01:14] Hana Baba: So today, we're going to meet Ayanna Davis. As far back as she can remember, she was just the quiet kid.
[00:01:23] Ayanna Davis: I was a very withdrawn child. I didn't speak much even when spoken to. My way to communicate was always through art. I would draw pictures and it would let my parents know like, what I needed or what I didn't like, or what I didn't want.
[00:01:40] Hana Baba: And it wasn't that she didn't want to talk to people.
[00:01:42] Ayanna Davis: I do remember not being able to speak. At the time I didn't understand why I wasn't able to be verbal as a person who was verbal.
[00:01:53] Hana Baba: She knew how to talk but she would just freeze. She'd have what she calls these nonverbal episodes where she would be too anxious to talk.
[00:02:04] Ayanna Davis: You know, people would talk to me and sometimes, I’d just look at them like they were- Something was wrong with them and just walk away and people were always like, ‘What's wrong with her, What's wrong with her?’ So these little episodes that I would have I did not like as a child I just couldn't wrap my mind around like, what was wrong with me like, even like- I was like, Ursula stole my voice box like in The Little Mermaid.
*Disney’s The Little Mermaid* Ursula’s laugh.
[00:02:40] Leila Day: Growing up, Ayanna had a big family. Her grandmother was a very central figure.
[00:02:45] Ayanna Davis: I would talk some to them because I knew them, and I was comfortable with them. I trusted them. It didn't give me anxiety to speak to them.
[00:02:55] Leila Day: So, the family they understood their little girl. It was outside of the family that was a problem.
[00:03:01] Hana Baba: Yeah, like there was this one time:
[00:03:03] Ayanna Davis: I remember my uncles, they always had like girls over, and I was with my grandma and one of them came over. I don't remember this girl's name 'cause she didn't last long, and I was really young. I think I was about five or six. And she was like ‘hi’ and my nickname is Yanni and my uncle’s like ‘This is my niece Yanni’ and then you know, and he was like ‘Yanni, say hi,’ and I just looked at her. And she was like ‘What's wrong with her,’ and like she was just so caught up on like, the fact that I didn't speak back to her and she's like ‘well does she know how to talk was wrong with her? She's so cute. How come she's not saying hi to me?’
[00:03:35] Leila Day: So, then what about school?
[00:03:38] Hana Baba: So, at school she would still sometimes just freeze up and just not be able to speak so she just didn't want to be as social as the other kids were.
[00:03:48] Ayanna Davis: It was just always easier for me to just go sit my behind down somewhere and draw a picture. That was just easiest for me so high school was when it was like, I couldn't take it anymore to the point where I became homeschooled. So, like being at school for 8 hours, 7 hours, however long. It was mentally exhausting. So, it was the social demand that I could no longer handle. As with the arts that was like my escape.
[00:04:18] Hana Baba: Yeah, Ayanna’s family signed her up for all kinds of arts classes like theatre and she loved it.
[00:04:25] Ayanna Davis: Yeah, The Wiz. I was a choreographer.
[00:04:28] *The Wiz* Scarecrow: Come on Dorothy! Come and ease on down, ease on down the road.
[00:04:35] Ayanna Davis: The thing I loved about theatre is yes, you do have to talk to people but you don't have to talk to them as yourself. You’re a character. So, theatre became my escape because I was a character. And me, growing up misunderstood, they understood this character. So, you know I showed up, I did what I had to do, I loved it. It was somewhere for my emotions to go.
[00:04:57] *The Wiz* Dorothy: We could sure use some company. Besides you have nothing to lose. Scarecrow: I don't, do I!? That was so smart you! I wish I’d thought of that. Indications are, it would be very advantageous for me to join.
[00:05:13] Ayanna Davis: It helped me with my social interactions because you know other castmates and the directors and the staff that worked the crew like, you know, I had to say hello. But sometimes I didn't, you know. Sometimes I would just walk by and give them like a little wave, a very dismissive wave. And it wasn't me being mean. Again, it was just me trying not to go into any type of sensory overload, but I do look back and I do remember those things and I'm just like, ‘Wow, OK it makes sense now you were crazy like everybody was saying there was something going on here.’
[00:05:52] Leila Day: So, Ayanna finishes high school, does some college, but she started dealing with some physical challenges. She was living with all different kinds of pain, and she would get the seizures a lot. And she was in and out of the hospital and so one time, while she was in the hospital, she had one of those nonverbal episodes she mentioned earlier.
[00:06:16] Ayanna Davis: My doctors would come in and speak with me and my dad. And most of the time, I would just look at them and I wouldn't say anything, and my doctors were like, you know, they kind of didn't know what to do with me and you know. So, the doctors would always speak to my dad, and they were like, ‘Has anybody ever told you that she might be on the spectrum?’
[00:06:35] Hana Baba: Okay, Leila. So, here is where I want to pause for a bit. There is a lot of research that talks about autism diagnosis. The CDC estimates that autism spectrum disorder affects one in 44 children in the United States.
[00:06:53] Leila Day: Autism spectrum disorder, That's the official name of the diagnosis and, seizures are common with people with autism.
[00:07:01] Hana Baba: Yeah, and so among those kids, the CDC says that overall, Black children are diagnosed later than White children. Actually, they say Black people are significantly less likely to be identified and diagnosed with autism period. In all age groups. It's not just the kids.
[00:07:22] Leila Day: So, for Ayanna she's been struggling with this since she was a kid. And now she's telling us in her 20s, they're just asking about this now. Had anyone ever even mentioned this to her before?
[00:07:34] Hana Baba: Well, I mean actually, yeah.
[00:07:38] Ayanna Davis: Yes. Just my regular therapist that I was seeing. We were just having a very casual conversation and he was like, ‘You sound like you're on the spectrum.’ But then I never heard a word of it from him again. The next question he asked me was, ‘What are you going to have for dinner tomorrow?’ and I'm just like, ‘Okay, so you’re just going to leave it at that?’ But since he left it at that, I left it at that. Like, I really didn't think about it again.
[00:08:00] Hana Baba: So, it wasn't until four years later, when Ayanna was in the hospital, that she was finally getting evaluated. And so, she got that evaluation for autism right there, in the hospital.
[00:08:13] Ayanna Davis: A couple days later, they came back. They spoke to my dad, they spoke to my treatment team, and they were like, ‘Yeah she's on the spectrum.’ It just- It finally clicked in my head. This is the answer you've been looking for your entire life on why you're so different. It's like, okay well now you know why you have communication issues, now you know why you're socially awkward, now you know why you have these sound sensitivities and, you only eat like 3 foods and, so it was just like- Everything was just like making sense, so I had to like, really fight past that denial and stop torturing myself. Because once I accepted my diagnosis, it was like the most beautiful thing, and I was in love with myself.
[00:08:58] Leila Day: So, I finally had an understanding of what she was experiencing her whole life. That must have felt really good.
[00:09:06] Hana Baba: It did, but Leila the challenges came almost immediately.
[00:09:12] Ayanna Davis: You know when I got my diagnosis, I was not given any resources, they did not tell me what my next step was-
[00:09:18] Hana Baba: So, she just, on her own, started to read about autism. She watched videos of people talking about their experiences with autism. She just did it, all on her own. And while she was in these online autism spaces, there was something she couldn't help but notice. She just couldn't find a lot of people who looked like her. What she did see a lot of was little White boys.
[00:09:46] Ayanna Davis: If I was White like, because I've seen it, you get your diagnosis and you get the freaking red carpet rolled out for you. So, it's just like they don't want Black women to be the face of autism. They want that little White boy with blonde hair and blue eyes to be the face of autism, so you get the sympathy.
[00:10:05] Hana Baba: And you know, if you just Google the word autism and, you could try it, you get mostly White male kids. And even in film and television, the majority of autistic characters in popular media, they tend to be White and male. I tried it. I mean it's very true. You see very few non-white faces in that Google image search.
[00:10:26] Leila Day: So, for Ayanna, she's saying that's problematic because it erases her, and Black people like her. People don't see her.
[00:10:36] Hana Baba: Yeah, and she's really passionate about that point.
[00:10:41] Ayanna Davis: They push this narrative about autism: Little White boy, White girl, genius. Like they always push the same narrative and they're not realizing how harmful that is to the people who are not the geniuses, the people who are not White so it's just like the narrative that the media continues to push about autism is exactly what is keeping it stigmatized.
[00:11:04] Diane J. Wright: So, one, autism is absolutely not a White people thing, okay? My name is Diane J. Wright. I am the founder of autastic.com and a disability advocate working in film and television industries.
[00:11:19] Hana Baba: So, Leila, let's meet Diane. Diane is also autistic, and she was also diagnosed as an adult.
[00:11:26] Diane J. Wright: I'm a Canadian American, biracial Black woman. Half my family is Afro Caribbean.
[00:11:33] Hana Baba: And Diane consults with Hollywood on accurate portrayals of people with disabilities and autistic people. She told me right now, she's working with a reboot of a very popular Black TV show.
[00:11:47] Leila Day: Ooh, which one? What is it?
[00:11:49] Hana Baba: She won't say.
[00:11:50] Diane J. Wright: A show much beloved in the Black community, going to have autistic themes in it and so they wanted a panel on being Black and autistic, so I brought them 6 Black autistic parents of Black autistic children.
[00:11:06] Leila Day: Ooh, is it Good Times? Is it The Jeffersons? Are we moving on up Hana, what is this reboot?
[00:11:16] Hana Baba: Okay, Leila you can stop guessing she is not telling us. So, Diane says this issue of image that we were talking about, it's important. It's not just about not seeing yourself as an autistic Black woman. She says there are consequences to that.
[00:12:34] Diane J. Wright: The research 40 years ago exclusively was White boys. So, it left out girls and women altogether and left out people of color altogether. in the last handful of years. Quite literally like, handful of years that's begun to change. But still, when you're overlooked and left out you know, that shapes the policy of the places you live in, that shapes attitudes of the society you live in, you cease to exist for a lot of reasons. And for us as the Black community, not being seen translates into being seen as other and being seen as bad a lot of the time. So autistic behavior gets seen as bad behavior, bad attitudes, willfulness, laziness, even criminality.
[00:13:25] Hana Baba: And this Leila, is where Diane says things can get dangerous.
[00:13:32] Newscast: We are following breaking news out of Colorado where the state attorney general announced that a grand jury has charged three officers and two paramedics in the 2019 death of Elijah McLean. The 23-year-old Black man was in a neck restraint and injected with a sedative in a Denver suburb, stopped as he was walking home from the store according to a city investigation.
[00:13:54] Diane J. Wright: We lost Elijah McLean. I mean that was probably the most gentle, sweet person and he was seen as threatening because he behaved differently. So, not a White people thing.
[00:14:10] Leila Day: Yeah, I remember the story about Elijah. He was 23 years old in Colorado and in 2019, he was walking home from buying his brother an iced tea at a convenience store and he was also autistic. There was a 911 call that said he was suspicious and when the police arrived, they said he resisted. They then injected him with ketamine to sedate him and he died of a heart attack.
[00:14:39] Hana Baba: Diane says that if society saw more Black autistic people in media television films online, that would help change stereotypes about Black people. But there are things that are changing representation like in this PBS kids show Daniel Tiger.
[00:15:10] *Daniel Tiger’s Neighborhood* Daniel Tiger: Hi Max can I play with you?
[00:15:14] Hana Baba: This year they introduced this new character Max. So Max is autistic and he's Black. In this scene the main character, Daniel tiger, is in his preschool class and Max is kind of off to the side by himself playing with some toy trains.
[00:15:33] *Daniel Tiger’s Neighborhood* Daniel Tiger: Do you want to play with me Max?
[00:15:36] Hana Baba: Daniel keeps trying to ask Max to play but he just won't answer. So, the teacher comes in she is also Black.
[00:15:46] *Daniel Tiger’s Neighborhood* Daniel Tiger: Why isn't Max answering me?
Teacher Harriet: Well Daniel, sometimes he needs more time to understand the question and decide how to answer. Let's give him some time.
[00:15:58] Leila Day: Hana, there’s something else we need to talk about here 'cause Diane is not just saying that this is something that White people need to understand to be able to recognize autism in Black people. She's saying Black people need to do some work too.
[00:16:12] Hana Baba: She is, and she has plenty to say about the internal work that we need to do as Black people, Black families, Black communities about the stigma that we associate with being neurodivergent and part of her work is explaining it to Black families.
[00:16:35] Diane J. Wright: And if you've not heard the term neurodivergence before it's a shared way of experiencing the world. Think of biodiversity as all the ways that life lives on our planet that's a concept we can get: Biodiversity. Neurodiversity is similar but with respect to neurological makeup. Autism is not a collection of deficits any more than curly hair is a lack of having straight hair or black skin is a lack of having white skin. We just exist as people. Tall people, gay people, left-handed people, autistic people.
[00:17:11] Hana Baba: And Diane also says that a lot of the time people get punished or shunned by their families because they think they're being rude or acting out and that starts a childhood.
[00:17:24] Diane J. Wright: So, when you have parents who are yelling at you and smacking you to sit right, talk right, act right. Like, we might move our bodies in ways to help us cope and regulate or just to express joy that other kids or other adults find inappropriate like, if you’re in church, ‘What are you doing? Why are you making noise? This is not the time.’ I have heard stories in my community of parents and other family members you know, physical, verbal abuse. Exclusion is a hard one. When you're excluded from family, from the people who love you, that is a huge punishment. Being talked about as ‘that one’ so that the entire family treats you as that one.
[00:18:15] Hana Baba: And speaking of church, another thing Diane says Black folks do...
[00:18:19] Diane J. Wright: Praying it away. Either their family praying for them or, making them go and pray for extended amounts of time to heal them.
[00:18:31] Leila Day: So, for a lot of autistic people shifting from family settings to social ones like college, that is really a lot of work for them. A lot of masking or trying to hide their reactions to things.
[00:18:45] Diane J. Wright: And you still have to show up and look like you're up for it and have the right tone of voice and have the right facial movements and all these things that are not natural to you. It's exhausting.
[00:18:57] Hana Baba: And there's something else Diane says that Black communities really need to work on. The fear that a loved one may be labeled. You know, on top of all the other labels we have to live with as Black people. That’s real.
[00:19:13] Diane J. Wright: But what the label of autism will give that person is self-knowledge and community. If someone makes fun of you because you, I don't know, flap your hands and when you're happy, which turns out I do. I did not realize I do that, but I do. You're going to be okay with it you're going to be like, ‘I'm just happy, whatever.’ As opposed to feeling othered and pushed away. But if you’re just labeled with weirdo or, I don't know, all the horrible things people say. There's no way to come out of that.
[00:19:49] Leila Day: But one thing that Diane thinks a lot of people don't see, is a certain joy that she says autistic people feel much more than other people.
[00:19:59] Diane J. Wright: There’s this term we use: autistic joy. It’s like everyone else’s is joy but you know, uniquely ours. The hallmark of our lives is our deep experience of pretty much everything, right. So just as we see things maybe too brightly or hear things too loud, we also experience colour and music and scents and things really like, a lot of us are supertasters. Like there's so much experience to be had which is a lot of the reason we don't ever want it taken away.
[00:20:44] Dr. Jamie Pearson: My name is Doctor Jamie Pearson. I'm an assistant professor of special education at North Carolina State University.
[00:20:51] Leila Day: Doctor Pearson has done a lot of research on autism in Black communities. She founded an organization called Faces that supports Black families raising autistic youth. She's looking closely at disparities and talks about it in this one study.
[00:21:07] Dr. Jamie Pearson: There's a young Black boy and a White boy. They present the same exact behavior profile, and the psychologist diagnosed the White boy with autism and the Black boy with a behavior disorder. Their profiles were exactly the same and so it calls us to think about what biases are present in that moment that drove that provider to diagnose this child this way and that child another way. And so, I think in schools especially, it's important to think about you know, how do we think about behavior? What really is disruptive behavior?
[00:21:41] Leila Day: So, like those movements that Diane was talking about earlier, the flapping or sudden movements. Some would see that is disruptive and then you know these kids will get in trouble.
[00:21:52] Hana Baba: Right, and Doctor Pearson has seen that a lot. She says that's how a lot of behavioral health care workers are trained, including her.
[00:22:01] Dr. Jamie Pearson: For example, some students with autism might engage in what we call flapping behaviors or like stereotypic autism behaviors. In the past, I was trained to like, to make that stop. That that's not appropriate, that you can't learn in school if you're flapping at the same time, right. But over the years we've learned that actually you can, and it's not appropriate for us to try to make someone stop engaging in a behavior that's actually helping them filter all the noise that's going on in the world.
[00:22:32] Hana Baba: And Leila, for young Black girls, Dr. Pearson says there's a whole other world of work that they have to do.
[00:22:43] Dr. Jamie Pearson: Young Black girls probably more than any other demographic have learned to do what we call masking, which is essentially adapting to typical behavior, right.
[00:22:53] Leila Day: Masking that's what Diane was talking about earlier. That type of code switching.
[00:23:00] Dr. Jamie Pearson: So, like even if they have the urge to flap and they’re in a classroom or in an interview, right. They will suppress that urge, or they will engage actively in making eye contact. It just reminds me of like this strong Black woman phenomenon. That let me mask, let me do everything I can to appear non-autistic so I can make it through this space.’ And so, I would argue that like young Black girls particularly, engage in masking the most and are the least represented in autism research.
[00:23:43] Leila Day: Young Black girls, the least represented in autism research. Dr. Pearson brought us full circle back to Ayanna. No wonder she's so frustrated, she couldn't find any information about Black women with autism. Because the information is scarce.
[00:24:00] Hana Baba: Yeah, and so let's go back to Ayanna when we left her, she was diagnosed trying to figure out more about autism on her own.
[00:24:11] Ayanna Davis: I told a few of my friends, and they were just like, ‘Okay, well you know we just thought you were creative you know; you don't bother us.’ They don't treat me different because I’m autistic.
[00:24:22] Hana Baba: After that she started going online to meet folks. In 2019, she took the dive, and she launched her own social media page. She called her page phenomenally autistic.
[00:24:36] Ayanna Davis: Autistic people don't need to be saved or healed by God from autism. Autistic people need to be saved from people who think we need to be saved from our autism.
[00:24:46] Hana Baba: And Leila she just talks about the good days the bad days. She posts about autism information.
[00:24:54] Ayanna Davis: Sharing my story on social media, I just decided to do it one day. I didn't plan it. I was just like, ‘Alright I'm just going to do this. Maybe it'll help.’ I was just looking for more ways to understand myself. My dad helps me with my emails and stuff because, you know, I do have the cognitive issues sometimes but I'm like getting a lot better.
[00:25:20] Hana Baba: Today she's an autism advocate, she's an actor, an author, she's been on TV. And that art that she loved so much growing up…
[00:25:31] Ayanna Davis: I have illustrated 17 children's books, two that I authored. My original characters, they've always been like images of like, you know, beautiful Black women and Black girls. Afros and Afro puffs and curls and kinks because you know it's just beautiful.
[00:25:47] Leila Day: She's seeing herself in her art. She's making it.
[00:25:51] Hana Baba: Yeah, it's like what she was missing when she found out she was autistic. Someone who just looks like her talking to her.
* * * * * *
[00:26:13] Leila Day: And that's The Stoop. The Stoop is a proud member of Radiotopia from PRX, a network of independent listener supported artist owned podcasts.
[00:26:23] Hana Baba: The Stoop family includes producer Natalie Peart, engineer James Rowlands and art by Neema Iyer.
[00:26:30] Leila Day: Support for The Stoop comes from the California Humanities, a non-profit partner of the NEH. Find them at calhum.org.
[00:26:37] Hana Baba: And special thanks to the NPR Story Lab. Bye.
[00:28:41] Leila Day: Bye.
