Understanding The Stigma And Struggles Of Parenting A Black Child With Autism

Episode Transcript

Dr. Nicole Beurkens: 

Hi, everyone, welcome to the show. I’m Dr. Nicole, and I’m really excited about today’s episode because this is a topic that I don’t think is talked about nearly enough. We’re going to be exploring Autism and Related kinds of disabilities, and the black community, including understanding how some of the unique stigma around this, the unique struggles of parenting a black child with autism, and, really, how we can better meet the needs of black families who have children on the autism spectrum and with related issues. We’re going to get into all of that. 

My guest today is Maria Davis-Pierre. She’s the founder and CEO of Autism in Black Inc. This organization aims to bring awareness to autism and reduce the stigma associated with the diagnosis in the black community. Her unique approach exemplifies her drive and motivation toward greater acceptance and overcoming the barriers and personal struggles associated with raising a black autistic child. Maria has been featured in Forbes, The New York Times, she’s collaborated with Microsoft, and personally has a wealth of experience on this topic. Maria, welcome. Thank you so much for being here with us today.

Maria Davis-Pierre:

Thank you for having me. I’m so excited to be here.

Dr. Nicole Beurkens: 

As I said, I think this is really an important topic. It’s one that I don’t think is talked about enough within the black community, outside of the black community. Certainly not in the professional realm. And so I was telling Maria, before the show, I was so excited to come across her information and what she’s doing, because this is something that we need to be talking about, right?

Maria Davis-Pierre: 

Most definitely. It is definitely not talked about enough, and we are dealing with it, we live it daily. So for others not to understand the struggles, it makes it even harder.

Dr. Nicole Beurkens: 

Absolutely. And I think that there are barriers around access to services, there are barriers around understanding what this diagnosis is. There are just all of these things that come up because we’re not talking about it. And we’re not really taking the perspective of understanding how we need to meet these unique needs. I’d love to start by having you tell a bit about your story of how you got involved in this kind of advocacy work, because I know you have a very personal connection to it.

Maria Davis-Pierre: 

I do. So my oldest Malia, who will be nine soon, she is autistic. And she got her diet and her official diagnosis around 18 months. Prior to having her, I was a licensed therapist and I was doing advocacy work. I was familiar with autism because I worked within the school system with teens and adolescents. So when I had my daughter, at about six months, she began to show signs and characteristics of a developmental delay. She had a slow response time to calling her name or saying or hearing loud noises. So at one point, I actually thought she was deaf. And then she started with sensory issues, so I went to my husband who is a physician, and I was like, “I think our daughter is autistic”. And he was like, “Yeah, no, it’s too early, go diagnose your clients and leave the kid alone.” So I said, okay. And then at 10 months, she actually regressed in her speech. So things that she was saying with no issue became an issue. And at that point, I knew, okay, we got to go to the pediatrician. So I’m sure all you parents know out there about early steps or similar programmes in your states. We went through that, and they were like “We do think she’s autistic. But since she’s not three, we don’t want to give her the diagnosis, go to your pediatric neurologist and they can give you the diagnosis.”

Okay, we all know that pediatric neurologists are hard to find. So we found that single person, went to him, and he did all of his expensive and extensive testing with DNA testing. Since she was so young, she actually had to be put under anesthesia for her MRI scans of her brain, and he gets his results back. And he’s like, “Yup, I do believe she is autistic as well. But I want to wait another year and a half just to make sure.” This point, I was just frustrated. We were already like six months into this process. And I’m a professional, my husband’s a professional, we know what’s going on. We know the importance of early intervention. And I said, “You know what? Okay, if that’s what you feel, then I’ll sit in your office every day from open until closed until you give her the paperwork”, because we know that you need the official paperwork to be able to get certain services. And he didn’t believe me. I sat in his office for a week. And then he was like, “Okay, I’ve got to get this crazy lady out of here.” So he gave me my paperwork, and I was like, “Okay, we are about to get things rolling. It’s going to be easy.” And then my colleagues started coming to my home. And they did not take any kind of cultural approach. They were not thinking about culturally responsive interventions, they were just taking their textbook interventions, and saying, “Here you go, and it’s going to work.” And that’s not what it was. I was like, “Okay, this is an issue.” So that’s how Autism in Black became formed, knowing that people need training on being culturally responsive, knowing that it’s so lonely for black parents, because I would go on websites, and nobody looked like me. And nobody understood the certain nuances of what it was for a black parent raising a child with a disability. So that is how Autism in Black came to be.

Dr. Nicole Beurkens: 

As is so often the case, that the personal intersects with the professional or what we ended up doing. And I think your story mirrors really what I hear from a lot of parents in general, but specifically, non-white parents. There seem to be barriers, in particular, around families of black children, non-white children, being able to even access appropriate or timely diagnosis, and then the treatment is is a whole other piece of that. I haven’t looked at the stats in a while. Maybe you’re more familiar with it. We know that Autism Spectrum Disorder and related kinds of conditions impact kids across the board regardless of race, regardless of culture, regardless of gender. But I had seen some statistics quite a while ago that there seems to be a real gap in identification, particularly in the black community. Is that still accurate? And can you talk a bit about that?

Maria Davis-Pierre: 

Yeah, it’s still very accurate. It was a two year gap, and now it’s about an 18 month gap. But I tell people all the time, that’s an overall gap that we’re looking at. That’s like the average. When we’re looking and going district by district, county by county, we’re talking about children getting diagnosed in middle school, children getting diagnosed in high school or categorized within the school system in high school. And we already know that that is a long time of services going by. Now black children have a high rate of being misdiagnosed with any behavioral diagnosis other than autism. So when we know if you’re not getting the right, appropriate services, again, that’s also going to impact you, and again, leads to the school-to-prison pipeline. So it is such an issue when it comes into the school factor. And then there’s also that medical factor of not getting the medical diagnosis because healthcare professionals don’t want to listen to us. I am a therapist, my husband is a physician. We were talking to our colleagues, and they were still not listening to us.

Dr. Nicole Beurkens: 

Yeah, absolutely. And I think the point that you made — I want to circle back because you said that black children are disproportionately diagnosed with emotional and behavioral disorders. And I see that all the time in my work. Very quick to be labelled as a conduct disorder issue, and oppositional defiant, and emotionally impaired, whatever it may be. But it’s actually the case, I think, as you’re saying that for a lot of those kids, those assumptions are made that this is some sort of behavior problem, which I don’t think is true for any child. But that’s a subject for a whole other podcast, right? But these kids are labelled as having a behavior problem, instead of taking the perspective of “Oh, is there something neurodevelopmental going on here?” And I think there is a big discrepancy between how that is viewed in white children and how that is viewed in black children. Would you agree?

Maria Davis-Pierre: 

I definitely agree. And I really think it goes to the adultification of black children. Black children are seen completely differently than white children. It’s happened to me personally with my son who was also autistic. He just got his diagnosis a few months ago, and his Pre-K class, he would be doing behaviors, and a student in his same class, who was white would be doing the same behaviors, but my son was seen as being devious, being aggressive. They were using these terms on a four year old, and his white student in there, nothing was wrong with him, right? “Oh, that’s fine. That’s what they’re supposed to do.” I’m like, “Well, that’s what he’s supposed to do as well.” But he was seen as “Oh, he’s an issue and he can’t be in this class. This class is not appropriate for him.” So it happens all the time with our children.

Dr. Nicole Beurkens: 

It’s interesting. Some of my listeners may not know this, but most of them know that I have four children, but I have three sons who are white, and I have a daughter who is black. And I can relate to what you’re saying there because I didn’t realize the extent of this problem until my daughter who is not autistic started school, and adultification of black children, that is a real, real thing. And I hear what you’re saying with that, and as a white parent, I did not realize the true extent of that until I had a black child in the school system going through that. And so I want to speak to that, for those of you who are listening and don’t have personal experiences, that are going “Really, is that an issue?” It’s an issue. And it’s an issue in general, but it’s particularly an issue when we start talking about kids with challenges and how we frame, understand and label those challenges.

Maria Davis-Pierre: 

Exactly. Dr. Monique Morris does a lot of work on black girl pushout: Just exactly what you’ve experienced with your daughter is so common. We’re going to take away talking about disabilities and challenges, and just talk about: Black children in general, are adultified across the board. And it’s such a problem. There are studies, a Georgetown study done on black girls, the results were black girls needed less nurturing, and they knew more about sex, adult topics, they didn’t need the caring. This is what is being said about black girls. They’re being adultified. They’re adultified in a way that is hyper-sexualized. Black boys are adultified in a way that is aggressive. They’re always going to be aggressive. Black Girls are always going to be knowing about sex. They can’t wear certain things, because “Oh, their bodies, they’re always trying to exude sex”, which is not true. People are adultifying them, and seeing that.

Dr. Nicole Beurkens: 

That’s right. And that has implications when we talk about the disability piece of it, for how their behaviors, their challenges are viewed, and then ultimately, parents’ ability to get their child appropriate diagnostic services and intervention.

Maria Davis-Pierre:

Yeah, it’s baffling to me how people, especially evaluators, are not even aware of their own biases. When we walk into the door, our culture comes in with us. No matter who you are, your culture is coming in with you when you’re being evaluated. And if you’re not familiar with black people, and you’re evaluating them, then that’s a problem, because oftentimes, our characteristics of symptoms do not match what’s in the DSM, and they do not match what’s in the DSM, because mental health is pretty whitewashed. The DSM was created by white men on white men, I’m not a white male. So I’m not going to fit into that box a lot of the time. So if you’re an evaluator, and you’re not taking culture into consideration and seeing things as deficits rather than cultural, relevant information, it shows up in your evaluations.

Dr. Nicole Beurkens: 

That’s so critical across the board, and again, we could do an entire podcast just on that. It’s such an important issue to bring into people’s awareness. Let’s talk about, from your experience, both personally, as well as all of the work that you’ve done with black families: What are some of the cultural things? What are some of the things that are missed, or some of the things that are either seen as a cultural issue, but actually need to be viewed as, diagnostically, a problem? Or the reverse: Things that are assumed to be some sort of problem or pathology, but really, we should be viewing through the lens of black culture? Can you touch on that a bit?

 

Maria Davis-Pierre: 

I think one of the most important things would be the vernacular. How we talk. AAVE. That is a language we talk and we understand, but oftentimes, it is seen as a deficit. If we use that kind of language, we’re seen as uneducated, that we don’t know. So I think that is one of the biggest things when it comes to evaluations, is that it is always seen as a deficit, and they get marked off for that. And we know how language plays a role in evaluations. So I think that’s one of the biggest things. And also not being aware of culturally-relevant information within the family. If you’re not having that conversation with the family beforehand, asking them about cultural traditions, asking them about eye contact, because in some cultures, you do not make eye contact. If you’re not asking these kinds of questions before you even start your evaluation, then it’s going to be set up to be inaccurate.

Dr. Nicole Beurkens: 

It’s so true because you have to look at the child in the context of everything in their life, which includes, of course, most importantly, family culture and the family system. And you’re so right, if we are not understanding that, then we are interpreting what’s going on with this child completely out of context or in our own context, our own white perspective, and really may misunderstand and misinterpret some things. So I think that’s so critical. I want to ask you about the issue of stigma in the black community, when it comes to developmental disabilities, maybe more generally, maybe even more broadly. Mental health issues, specifically autism, because I’ve talked with so many families over the years, and this is a real thing. There is some stigma there. Can you talk a bit about that, and your experience with that?

Maria Davis-Pierre:

Yeah. We have to deal with stigmas, not only from outside of our community, but also within our community. And I think a lot of it has to do with the fact that society does not give black people grace. We do not have the grace to have mental health challenges, we do not have the grace to have developmental disabilities. We do not have the grace to have disabilities in general, because it’s like “Pull yourself up by your bootstraps, and continue, and do it.” And I think that plays a huge role in how we as a community even view it. We view things in the way that “Okay, no. I cannot have a disability, I cannot have a mental health challenge. If I do, something is wrong with me, and people are going to look at me a certain way. And how am I going to then navigate life already being a black person, and then having this challenge?” So I think a lot of it comes from just being fearful. Fearful of what’s to come, fearful of how people are then going to view us. “If my job finds out, will they fire me?” Those type of things “I my friends find out, then how are they going to view me?” Because let’s just be honest, a lot of information doesn’t get to our community. So we do not know about mental health or developmental disabilities. I could go to my parents’ small town in Alabama and say “autism”, and a lot of people will not know what it means. They will automatically think of intellectual disability. And that’s not it, right? So I mean, yes, you can have an intellectual disability and be autistic, but you can also be autistic and not have an intellectual disability. The information doesn’t get to our community, so we have such wrong information, that we are now guided by fear, shame and guilt, and all of those things rolled into one. And society doesn’t allow us that grace to experience those emotions. We have to just keep pushing forward. I think that’s a lot of it. 

And then on the other hand, we have the fact that there is such a mistrust with the medical community. So there’s a long history of why we should be mistrustful. But because when we’re thinking about — especially those who have more than one generation living in their home, and they’re listening to grandma and mom telling you how to raise your child and what you should do, that information is going to supersede the information of a health care professional a lot of times. So it’s a lot that you can be up against.

Dr. Nicole Beurkens: 

So beautifully put, and I think I’ve had many many black parents say to me over the years exactly what you were expressing a few moments ago, “Look, life is already hard enough for my child being a black child in the school system, or just being a black child in general. And now I’m supposed to try to understand or accept that there is something else that is going to be put on them that people are going to view them differently, as less than?”, and so I think there is some of this hesitancy to go down that path because it is fear, and rightfully so. I think parents of black children worry so much about them on so many levels when they don’t have a disability. And then it’s like, “Oh, now you’re telling me there’s maybe another thing that I need to be concerned about for their well being now and in the future?” And I think it just feels like too much to so many people.

Maria Davis-Pierre:

It is. It’s definitely overwhelming. I mean, the first thing that I thought of when both of my children got their diagnosis is how are interactions with the police going to be for them?

Dr. Nicole Beurkens:

Amen. That’s right. Yeah. 

Maria Davis-Pierre:

That’s the first thing that I thought of. And I get emotional thinking about it now, because it is such a scary thing. And every client that comes to me, that’s one of their worries. And I tell them truthfully: I don’t have an answer. There is no answer for us. We can prepare our children so much, but it’s truly not their responsibility, because they should be given that grace when they’re having that interaction with somebody. So it’s just such a scary situation.

Dr. Nicole Beurkens:

And I think that exemplifies this intersection of things for, I’ll say, black children with disabilities, but it’s not even just children. It’s black people, adults, too, with disabilities. There is this intersection happening there that puts them at such greater risk across the board, right? Police interactions with black children in general, that’s a much higher risk. People with Autism and related disabilities, in general, that’s a high risk. Now we put both of those things together, and you’ve got a black autistic child, you’ve just magnified that risk. And I think also with the medical community. It’s difficult as a black person to get quality, appropriate care. It’s difficult as an autistic person to get quality care. Now you put those two things together, you have a black autistic individual, and you just feel like it’s almost insurmountable, like, wow. The convergence of these things, it really does complicate things in a way that people outside of the black community just can’t really comprehend how much the intersection of those two things is problematic.

Maria Davis-Pierre:

It is, it’s such a hard thing. And I tell people all the time: The first thing that people see is our skin. They see that we’re black. So those biases come right into play. We don’t even get to the point that we have a disability. I have ADHD and people all the time tell me “Oh, okay, you don’t look like it.” What does that look like? 

Dr. Nicole Beurkens:

As if there’s a look, right? There’s an ADHD look or we wear a name tag or something. 

Maria Davis-Pierre:

Exactly! The same with my daughter. “Oh, are you sure she’s autistic?” But they know for sure we are black. Those things come right on. When I go into the school system to advocate for my child, I have been met with so many stigmas, asking me if my children have the same father, asking if the father is even there, if he’s in jail or prison. These things that they’re asking, automatically assuming that I am on government assistance, which if I was, it would be my business. But just the assumption, the automatic assumption that only black people get. It’s things like that that make it so much harder for us to navigate an already hard system.

Dr. Nicole Beurkens:

That’s exactly right. So what would you say to black parents who are listening, or parents who are raising a black child who are like, “Yeah, that’s me. I haven’t wanted to go down the path of diagnostic evaluation or pursuing services, because I’m scared for my kid.” Based on your experience, what would you say to those parents?

Maria Davis-Pierre:

I would tell parents to go ahead and do it, because the school-to-prison pipeline is real. And a lot of times, if your child is not categorized in the school system, they will be deemed a behavior problem. But a lot of times that categorization will help them and change that trajectory of the school-to-prison pipeline. It is so real for black people. A lot of times they’re put on the school-to-prison pipeline, and once they get into the justice system, that’s when they get their categorization, and already then, it’s too late for us. So we have to be on top of it. We already know as black parents, we already have to be on top of so many things. This is just another one. Going to get an evaluation is not going to hurt your child, it is not going to harm your child. Getting your child services is not going to harm your child, unless they have somebody who doesn’t know what they’re doing. And that’s a whole other story. But making sure they get services is not going to harm them. It is going to help them prepare them to be an independent person living in society. So you have to, for your child, do it. And a lot of times I tell parents: Look, we don’t have the time to catch up to being okay with this. We can do it in the process. But we have to make sure that we are doing what we need to do for our black children. Because like we know life is not going to be easy for them, so we at least can do this one thing and then catch up to being okay with it, educate ourselves on what to do. We need to make sure we’re getting in and getting these evaluations, and holding the evaluators accountable to do the right work with our children.

Dr. Nicole Beurkens:

So well-said. What would you say are things that black parents can look for in an evaluator? Sometimes you get stuck with who you get stuck with, right? Like the school system is a great example, like “Here’s the team we have. You don’t have choices.” But in pursuing maybe medical evaluation or psychological evaluation outside the school system or in treatment services, are there things that you have found, as a black parent, are helpful indicators to you that a professional might be better suited to working with your family? Or maybe the flip of that? Are there red flags that you look for in someone that you might hire to work with, to do services or to do a medical evaluation where you’re like, “Oh, no, no, steering clear that. Going to find somebody else”? Because I think that that practically is helpful for parents.

Maria Davis-Pierre:

It is. I tell parents all the time, there are questions that we should ask because it’s going to be very hard for you to get a black one all the time, a black person that’s a medical professional all the time. We look at doctors, it’s only 2%. We look at psychologists, it’s only 4%. So oftentimes, we are going to be in the room with an evaluator who is not black. So there are questions that I ask when I look at the paperwork: Are you asking me about my culture on the intake paperwork? Two, I’m going to ask you: Have you ever evaluated a black person? That’s what I’m going to ask. I look forward to making sure you have culturally-relevant materials in your professional space. If you have a hairbrush that is not related to what we use in our home, then I’m going to let you know: Hey, you got to get a hairbrush that black people use. That’s not who we are, we don’t relate to that. If all of your dolls are white, we can’t relate to that. If all of your materials are of white people, we can’t relate to that. And if you tell me you don’t see color, that is a definite red flag to me, and then I’m going to leave, because I don’t have that privilege. I know I am a black person every day, and you do have to treat us differently when you’re working with us. And if you say you don’t see color, then that is a red flag to me to know that you’re not going to give me individualized treatment.

Dr. Nicole Beurkens:

So important. And I think some really practical things you said there, like for parents to be able to go on websites and look at: Does this professional or this clinic or this organization have culturally-appropriate, sensitive materials on their site? Do you see people on the site or in the mailings, or whatever it is that you’re looking at? And to not be afraid to ask those questions. I think those are important questions. I think parents in general should feel empowered to ask more questions before just accepting the services of any professional who they might be working with in the medical or educational realm. But I think, especially when it comes to these important issues of culture, of race, it’s very, very appropriate. And as a white evaluator, a white service provider, it would not offend me in the slightest were a non-white parent to ask me that. I would welcome that. And if you are a black parent who feels like “I don’t know, I don’t want to offend somebody”, if that offends somebody, then you shouldn’t be working with them. And that’s your litmus test right there: If you’re asking those good, appropriate questions, and you’re getting sort of this taken aback response, that tells you everything you need to know right there. Call the next person on the list. 

Maria Davis-Pierre:

It does because talking about race is uncomfortable. But as individuals who are not black, you have to be okay with that, because you’re going to get those questions. And even as a black professional, I expect my clients to interview me. I expect that. You should. You should want to know who is providing your treatment, and I am okay with that, as a professional, because I know that whoever my children are going to, I’m going to be asking you questions. And if you seem any kind of uncomfortable, or don’t want to answer them, then I know I’m going to go and take my money elsewhere, because I want them to get the care that they need. I don’t need a health care professional messing them up. That’s very important. When we’re talking about mental health professionals, it is very easy because we hold a lot of power when we’re talking about somebody’s brain and mental health, we hold a lot of power. And if you are that uncomfortable, I’m going to take them somewhere else. 

Dr. Nicole Beurkens:

That’s right. And for parents to feel like that is okay, and in fact, it’s critically important. 

Maria Davis-Pierre: 

Give yourself that permission.

Dr. Nicole Beurkens:

That’s right. And you may not have choices within the school system, but you can still ask the questions and speak up about it. And if there is somebody working with your child, or on the evaluation team, or teaching your child or whatever, who is not respectful of this, who is not culturally-informed, who is not understanding these things, then it is absolutely your right and your obligation to go to administration and request something different or request that they gain the knowledge. You don’t just have to tolerate ignorance when it comes to people who are working with your babies. 

Maria Davis-Pierre:

Yeah, that is such a great point. A lot of times we feel like within the school system, we’re stuck. No, you have rights. Your child has rights. Exercise those rights to the fullest extent, because a lot of times schools are just winging it by what they feel is right. They don’t really know the law, a lot of times when you meet them with the actual law, then they’re like, “Okay, we really have to do that.” Yes, you do.

Dr. Nicole Beurkens:

Yeah. I want to shift gears just a little bit and ask: We’re talking about the issues that parents may encounter with healthcare professionals, around either getting their child an appropriate diagnosis, or getting treatment services. But I want to have you speak to these issues within the health care professionals community? What can and should we be doing differently, to better understand the needs of black children, autistic or with other disabilities and their families, to better reach them with the information that they need? Because you raised an important point a few minutes ago about how this information is just not getting into a lot of black communities. So what can we be doing differently or better on the professional end of this?

Maria Davis-Pierre:

One is holding yourself accountable and being honest with yourself. I think a lot of times as professionals, we are very elitist. And we believe that we know all and we don’t have room to be told “This is not right”. No, that’s not how we should be. You need to always be in a place of learning. There is no such thing as being competent in anybody’s culture. I am a black woman, and I will never be competent in all things black women, because we are not monolithic. So you need to always come from a place of learning, you definitely need to be in training, culturally-responsive training, intersections of race and disability and all the other intersections. You need to be making sure you’re constantly getting these trainings. It’s not a one and done thing, this work will last your lifetime. So as professionals, again, be okay with that discomfort, because a lot of times you will grow within that discomfort. So it’s okay to know that, “Okay, this is a little uncomfortable for me, I’m out of my comfort zone.” That’s okay, because you’re going to grow within that. And also know that it’s not a perfect process, you will mess it up, and it’s okay, because you can apologize and continue to move forward with that. So that’s the advice I always give professionals. 

Dr. Nicole Beurkens:

And what are some of the questions we should be asking when we start working with — for my professionals listening who are in the educational realm, or in the therapy or medical realms, for people who aren’t aware of these things, what suggestions would you have as a starting point? What questions should we be asking when we have a black family? Or let’s just say, a family of any culture or race or background that is different from our own? What are some opening questions or some ways that we can open up that dialogue and get a better understanding before we just dive right into testing the kid?

Maria Davis-Pierre:

I think first you have to be aware of your own biases. So you check those biases with whoever you’re dealing with, whatever culture you’re dealing with, you should be checking yourself and saying, “Okay, well, what are some of the biases I have with this particular culture?”, and be honest with yourself about that, because if you’re not, then you’re going to go in there, and those biases are going to be coming in and you’re not going to be able to check them.

Then when you get in there with the family, you need to start asking those kinds of questions: Is there anything about your culture I should be aware of? Is there anything about your family that I should be aware of? When dealing with black people, asking about depression and anxiety might get you a “no” answer, but asking about sadness or “Does this make you have butterflies in your stomach?”, asking ways around that, some of the feeling work will get you those answers that you’re looking for. Because a lot of times we do not have a diagnosis for the older people in our family. So we don’t know if there’s a history or not. But if you begin to ask questions about characteristics and symptomatology, then you’re probably going to get that answer. Because a lot of times what happens with my colleagues is they asked about depression and anxiety and suicide attempts. And it’s like, “No, no, no, no.” And then in session, they’ll be explaining, I’m like, “Well, you said no,” then they’re like, “Oh, that’s what that is? I didn’t know what that was.” So you have to ask around it?

Dr. Nicole Beurkens:

Well, I think what that makes me think about is especially when we’re thinking in the realm of autism spectrum disorder or neurodevelopmental disabilities, it’s way less likely that somebody is going to mark a family history of those things, because they probably weren’t ever diagnosed or diagnosed properly. So the importance of, as you just said, asking around more symptoms, how they may be presented. You know, “Tell me about your uncle, so and so”, to get a better idea, because there may well be some genetic link, some family history there, but it just hasn’t been labelled as such. And that’s a really important thing, especially from a diagnostic standpoint to be inquiring about.

Maria Davis-Pierre:

It is. There are actually people in my family who are autistic, and I did not even know until my daughter got the diagnosis, and I created Autism in Black. And it was like, “Okay.” And a lot of other black families, they’ll be like, “Well that’s just how Uncle Joe is.” No, Uncle Joe is autistic. So we give it that pass, that excuse of “That’s just how they are, that’s just how they act”, not knowing that they act that way because they have an actual disability. My grandparents were definitely not taking my mom or any of her siblings in to get a diagnosis. And a lot of times, my mom and her siblings weren’t doing that with me and my cousins. So you really have to get around and navigate through those questions. Because a lot of times, if you’re using the actual diagnosis label, we’re just going to say no, because it is no.

Dr. Nicole Beurkens:

So important. You shared just so many great insights, so many great practical tips. We could talk for hours about this, but I know that we need to wrap up here. But I do want to make sure that you tell people where they can find out more about the work that you’re doing, about Autism in Black, because I know we have a lot of people who are going to want to get more information.

Maria Davis-Pierre:

Sure. My website is www.autisminblack.org. On Instagram, I am @autisminblack, the same on Twitter, on Facebook, I am autisminblk, and my email is info@autisminblack.org.

Dr. Nicole Beurkens:

Fantastic. And we will have all those with the show notes for all of you to go and find it at the website. But please do access those resources, follow Maria on social media. She’s got great resources on her website as well, and I know you do quite a bit of speaking and training yourself, and that’s a great opportunity for families and professionals to be able to access and really dig in more deeply with some of these things. 

Maria Davis-Pierre:

Yes, I have a three-part culturally-responsive training that a lot of organizations have hired me to do for their organization. I have the Autism in Black podcast, which is for parents, professionals, everybody who just wants to learn more. And we just had our first ever Autism in Black conference, which was amazing, and we will be having those replays available for purchase soon. So yes, go to the website, check out the podcast on any of your favorite podcast streaming platforms and you can find out about my trainings as well on the website. 

Dr. Nicole Beurkens:

Fantastic. Maria, thank you so much, not only for being here today and sharing your wisdom and experience with us, but really for the incredible and important work that you are doing around all of this in the world. Really, really grateful to you. Thank you.

Maria Davis-Pierre:

Thank you so much for having me.

Dr. Nicole Beurkens:

And thanks as always, to all of you for being here and listening. We’ll catch you back here next time for our next episode of The Better Behavior show.