#099: Autism in Black Families: Interview with Maria Davis-Pierre from Autism in Black

autism in black families

Maria Davis-Pierre is the founder and CEO of Autism in Black, a group that provides autism information and awareness to families in the black community. When her daughter was only six months old, Maria Davis-Pierre noticed that she had such a slow response to loud noises that she began immediately to wonder if she had autism. As a mental health therapist, she had experience working in the school system with children, and she knew that early intervention was important. By the time her daughter was 18 months, there was no doubt that it was autism, but the doctors wanted to wait until she was three years old. That’s when Maria camped out in the doctor’s office every day until he finally agreed to give her a diagnosis.

Both Maria and her husband had medical backgrounds, and they knew that early treatment for autism would improve the trajectory of their daughter’s life. But for many black children, the statistics paint a different picture. 47% of black children who have autism also have an intellectual disability. This is double the burden of white children, who only have a 27% chance of having both. Even though these statistics are laid out along race, it’s important to note that this has nothing to do with genetics and it has everything to do with access to diagnosis and treatment.

For Maria, who’d already been advocating within the black community, she saw that the stigma and bias from both inside and outside the black community were hindering black children with autism from getting the help they needed in a timely fashion. Racial bias, the distrust between the medical community and the black community, and religion are just a few of the outside forces that affect a black child’s diagnosis.

I realized early on as I was advocating for Lucas that my background gave me an advantage over other parents. My education and socioeconomic status gave me privilege over other parents who just didn’t have the same resources that I did, and I wanted to change things for those other parents who don’t have the same advantages. Maria felt the same call to be an advocate for black children with autism. That’s one of the reasons that her organization focuses on training therapists to be culturally responsive as they provide therapy.

Maria is hosting an Autism in Black virtual conference on April 1-3, 2021, and she is looking for attendees and speakers to discuss this topic. If you’d like to be involved in her work, she invites you to contact her through her website.

TODAY’S GUEST

Maria Davis-Pierre LMHC, is Founder and CEO of Autism in Black Inc., located in West Palm Beach, Florida. This organization aims to bring awareness to Autism and reduce the stigma associated with the diagnosis in the Black community. As a licensed mental health therapist, Maria primarily works with parents to provide support through education and advocacy training. Her passion for working in the field stems from her personal journey with Autism when her daughter received the diagnosis at a very early age. In addition to therapy, Maria dons many other titles including coach, speaker, advocate, and author. Her first published work, The Self-Care Affirmation Journal, is currently available for purchase on Amazon. Maria’s unique approach to coaching and counseling exemplifies her drive and motivation toward greater acceptance and overcoming the barriers and personal struggles associated with raising an autistic child.

YOU’LL LEARN

  • How the intersection of race and disability influences the diagnosis of a black child with autism.
  • Why understanding the black family culture is a key factor in providing effective therapy services.
  • The barriers for early diagnosis and early intervention for black children.
Want to get started on the right path and start making a difference for your child or client with autism?
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Transcript for Podcast Episode: 099
Autism in Black Families: Interview with Maria Davis-Pierre from Autism in Black
Hosted by: Dr. Mary Barbera

Mary: You're listening to the Turn Autism Around podcast episode number ninety-nine. I'm your host, Dr. Mary Barbera. And today we are talking about autism in black children with our guest, Maria Davis, who's an autism mom. She's an author and she's also a mental health therapist. She is the founder and CEO of an organization called Autism in Black. And she has a new book coming out. She's just a wealth of information. So I'm so excited to bring you to Maria, bring Maria to us to explain some of the struggles and challenges within the black community when it comes to autism. So take a listen. I'm sure you're going to love this interview.

Mary: Thank you so much for joining us, Maria. I'm so happy to meet you and to have you on the show.

Maria: Thank you for having me. I'm very excited to be here.

Mary: Yeah. So I came upon your work just in the past week or two, and so you were so gracious to schedule this appointment right away. And we are recording this in October, but with the Black Lives Matter movement and the killing of George Floyd and everything, I really wanted to have someone on the show with your background. So I'm just thrilled to be able to feature this topic. And I think you're going to be a wealth of information to all of my listeners, no matter where they're living in the world, where people from 80 different countries, over 80 different countries and we have parents and professionals of every race and religion. And so we really want to welcome everyone here. So the first thing I want to ask is describe your fall into the autism world.

Maria: Sure. So my daughter Malia is autistic and she is eight years old and I am a licensed mental health therapist. So prior to having my daughter, autism wasn't on my radar. I was still focusing on the black community, but more so what they label at risk youth. So I was working in the schools IPs, things like that. Then my daughter was born and around six months I began to notice some signs or characteristics of autism, some sensory issues.

Maria: At one point I thought she was deaf or hard of hearing because she had such a slow response time to any loud noise, even her name. So I went to my husband, who is a physician. He's an internist and he was like, "Diagnose your clients. Leave my kid alone". So I let it go. But at 10 months, she actually regressed in her speech. So she stopped saying, mama, dada and things like that. And at that point I knew, OK, we need to start this, I guess, journey to get her official diagnosis. So our first stop was our pediatrician, like most people, and she was like, no, she was a preemie. So we want to wait, give her some time. And it's like, no, I'm not here for that. I just need the referral. If I even knew where to go to get the diagnosis, I wouldn't have even been having this conversation with you. I would have gone right to the person who's going to diagnose my kid. So she gave me the referral.

Mary: And you were thinking you were thinking autism. Six months on. Yeah. And when she was 10 months old, did your husband then agree that you should or was he still kind of dragging his feet?

Maria: It was no. Nobody in my family was agreeing with what I was doing at all. They were just like, no, this is not it. Just give her time to catch up. She'll be fine. So, yeah, it was kind of I mean, he would he was coming to the appointments, but he was just like, hey, I'm supporting you. I'm not really going down. And when they tell you it's not autism then we can stop this whole thing. So we got the referral to early steps. We went there. And then for most people who know there's six or seven professionals looking at developmental milestones across physical therapy, occupational therapy, speech and language pathologist, developmental pediatrician, and then they were like, yeah, we do believe she is autistic, but because she's not three, we can't give her the diagnosis. You would need to go see a pediatric neurologist to get the diagnosis. And at that point, there was one in our area. So we got an appointment with him.

Maria: And at this point, my husband got on board when professionals that were not his wife said, yes, we do believe it is autism. So he was like, OK, we're doing this because in his mind, he was more faking his black and white medical side. So he was like, well, the study says you can't diagnose before three and she's not three. So why are we looking at autism? We're thinking autism. So that is where his mind was. So when a professional said, yes, we do believe she is autistic. He automatically jumped on board. He was like, well, let's do this thing. So we went to the neurologist and he was like, OK, you got to take all these DNA tests that at that point we would have known if she had any of these genetic disorders. But we did the testing. Insurance didn't cover it. We had to pay for it out of pocket, go back to him for the appointment. He was like, OK, yes, I do believe she is autistic, but because she's not three, let's wait a year and a half and see what happens.

Maria: So at this point. I was quite frustrated knowing that early intervention matters, knowing that, you know, I'm a therapist and I see this, I was like, no, this is not this is not going to happen. So I told him, I'm going to sit in your office every day until you give me the diagnosis. I'm going to greet your receptionist, know we're going to chit chat and I'm going to stay here from open to closed. And he did not believe me. So the next day I was there at open and I sat there. And then another day I was there and sat there meeting the receptionist, got to know each other very well. You know, I was bringing in coffee. People in the waiting room were talking to me like, you know, how are you doing? I'm just waiting for him to give me his diagnosis. And then five days later, he said, Here's your paperwork. Please go on about your way. And I was like, yay. You finally got this paperwork that started a whole other journey that we started to go down. So that is how I fell into the autism world.

Mary: Yeah. Wow. I've never heard of that story quite like that, where you just camped out in the doctor's office. I love it. So your daughter was diagnosed at 18 months and you started therapy. Now is she is eight, you said, and she is on the mild side of the spectrum.

Maria: So her initial diagnosis was Asperger's. Now, should it be considered level one? She was not speaking at the time that well. She was not as vocal with complete sentences and words and things like that. But as therapy progressed, early intervention, she now still has a speech delay, but she is all about conversation. So, yeah. So, yeah, she's considered a level one for those who use those that terminology.

Mary: Yes. And there's three levels with the new DSM and the new DSM is actually old now. I think it was 2013 was the last revision of the DSM five. So yeah. OK, so the really fascinating story and I'm glad we, we discuss that. But I do want to talk more mostly about your work in helping black children and black families get the help that they need, because there's very few women in the world that would sit in the doctor's office for five days straight, let alone a black woman. And that's not to stereotype. But in general, based on years and years of research, children who are black or brown have a much later diagnosis than white children. That's been found in every study. And so, you know, what are the unique challenges to black families?

Maria: There are so many stigmas on both. And so there are stigmas within our community and those stigmas outside of our community. And first, let's talk about the stigma outside the community, because that's where we're going. We're going to the health care professionals to talk about the characteristics that we're seeing. And we're not getting the same response as you will probably get when you go in there with your concerns. You know, my husband is a physician. He went to medical school and still people we're not listening to him. I'm a clinician who works and does therapy and people weren't listening to me. So, you know, there are studies that have shown that health care professionals don't even want to have conversations with black parents, mothers in particular, about autism. They don't even want to start the conversation because of how they perceive black mothers will react.

Maria: So because you don't even want to have the conversation or start the conversation, that leads to a gap because we're getting diagnosed. Then later, we're talking in the school system. When they see it, if they catch it and diagnose it correctly because of evaluator bias. And to just be honest, because that's just type ofperson I am in. The mental health system is pretty white washed. The DSM was made by a white man on white men. So when we're looking at black individuals, black family, the black children, white girls, some of our characteristics might not look quite textbook. So we might get more not. MIT studies have shown we are misdiagnosed across the board with more behavioral issues. So there's that evaluator bias. If I am a white evaluator, because only four percent, four percent of psychologists are black, so the other ninety six percent are other. So my chances of getting a white evaluator are pretty high.

Maria: And if my evaluator hasn't had any culturally responsive training, hasn't had any kind of interactions with black people outside of the evaluation room, those bias can come into the room and misdiagnose the children. So we have all of those stigmas outside of the community that is hindering us, getting the diagnosis at an early age. Then there's the stigmas within our community. So we're looking at large mistrust when it comes to health care professionals, rightly so, because the history of black individuals and health care, we have testing that has been done that hasn't been consented. We have the fear of social workers coming into our home because there's a long history of abuse of power and taking our children away. Black children get taken out of the homes more than any other race. So there's all of that. And with that mistrust, I might not be so forthcoming with information that could be helpful in getting my child diagnosed. I might not be so forthcoming with you actually coming into my home to provide any interventions or if I do any evaluations.

Maria: For the black community, it could be a multigenerational home. So not only am I living in my home, my mother may be living in my home, my grandmother could be living in my home. And all of those opinions are affecting how I parent. Culture wise, we are to respect those who are our elders. So if my elders are saying, no, just give that baby time, give them time to catch up, I'm more than likely to trust what they're saying. You know, if they say no, you didn't talk to you were three. So and you're just fine now knowing that if I really didn't talk to I was three, you probably should have taking me to see somebody get help with that. But, you know, knowing that portion of it affects if we're going to get a diagnosis, religion plays a big portion. And I even though I'm speaking in general here, I know that black people in the black community are not monolithic. But when looking at, you know, a large group, we're looking at religion, being an anchor in the black community. And if my pastor is the person that I'm going to and he's saying, you know, let's pray the autism away, let's lay hands and pray the autism out.

Maria: And that's what I'm saying no to do, then that's what I'm going to turn to, going to turn to those that are in my community support circle. And of all those people have a certain perception of disabilities and autism. And that's probably going to kind of guide how I feel about it, because the information does not get to our community. So I can get to your community. There's information that we don't get about autism. My parents are from a small town in Alabama and a lot of them do not know what autism is. And it was a lot of explaining of what autism really is because it sounds so scary and it sounds like the big bad wolf. And they're like, oh, no, we can't we can't deal with that. Because information doesn't get to our community. We may think of autism as intellectual disability. That's the first thing that they're thinking. And yes, can someone who was autistic have an intellectual disability? Yes, they can. But autism does not mean automatically intellectual disability. But because we don't get the right information to our community, it becomes much scarier for a lot of us. And that leads to later diagnosis down the road.

Mary: Yeah, and I do want to talk about intellectual disability, because before we hit record, I told you about a study while I was actually a paper quoting a study, and it's by Ami Klin and colleagues. And I did a whole podcast solo show on Ami Klin's work because it is really good for the whole society to really look at early autism detection and treatment and a whole different lens. And that podcast is that MaryBarbera.com/93. You can get this link to this paper affording autism in early brain development redefinition. You can also get links to pre two and a half hour workshops Ami Klin did over the past two years. It's just really fascinating. And one of the things when I was at the two thousand nineteen workshops that he gave at the National Autism Conference, I was there physically that year and virtually in 2020 of course. But in 2019 there was question answer period. And I raised my hand and I said, Dr Klin, do you think that autism can be prevented?

Mary: And he said based on his eye gaze tracking studies and twin studies. And he's just a world-renowned researcher at Emory University in Georgia. And he said, based on all of that, I don't think that autism as it can definitely can be prevented. However, he said, I am almost positive based on my research with early intervention and early detection, that intellectual disability can be prevented or remediated if caught very early. I am pretty sure that speech disorders as well as behavioral disorders can be prevented and change the trajectory and reverse things. So you can literally change the trajectory of being low functioning, very impaired with autism and intellectual disability.

Mary: Like my son Lucas, who's twenty-four years of age and all the way up to somebody who's high functioning, who's going to college, driving, getting married, and you don't have total control on how it's going to work out. However, black children from this article, which is one of the absolute reasons I also want to do, is black children, according to this paper, have eight-yearolds with autism, plus intellectual disability. Black children have forty seven percent chance of having both.

Mary: So you're saying, like the multigenerational people are thinking autism and intellectual disability, probably because they have a half a chance of when they see autism, they see it combined with intellectual disability, but they have almost double the burden of intellectual disability as white eight year olds who have a twenty seven percent chance of having both. And Hispanic children are right in the middle at thirty six percent. This has nothing to do with genetics. This is purely a access to detection, treatment and the wherewithal that you knew to sit there and wait for the diagnosis and to insist on it and to push it and not to. Just listen to the experts who were saying we'll just wait until there are three and we waited till we were three, not my husband was not in denial. I was in denial, which is crazy.

Mary: But there's no crystal ball to look backwards or forwards. But what we need to do is we need to have better access for all children and we have to have better access for black children, because that is really a frightening statistic that they will have currently. They are having double the burden of intellectual disability. And so some people and the autism community, especially high functioning adult autistics, they don't want to talk about recovery or prevention. They and some people think autism is a gift. And, you know, we're talking about little kids who are delayed with speech, with social, with sleep, eating, potty, you know, to the point where we have to help remediate those challenges. We're not trying to change a child's personality or even, you know, maybe they will end up with high functioning autism. But we need to get them to their fullest potential.

Mary: And the quicker we act, which is the whole purpose of my new book, Turn Autism Around, which will be out in April. So I do think that it's a good point that you're making about intellectual disability being combined with autism. And it sounds like your daughter, because of the early diagnosis and early treatment, you managed to get her to reach your fullest potential. Not that she's eight and the game is over. You're still, she still, I'm sure, has challenges, and I'm sure she still has. So what kind of challenges do you face with her still?

Maria: One, I think with having a black child, the challenges come first with race, because when we're talking about intersection of race and disability, when people see my child first, the first thing that they see is a black little girl. So when advocating for her, I have to combine advocating for her disability with advocating for her being a black child. And there's just certain things that are different for us. So when going into the IP rooms or when, you know, talking about make sure she has the services, it's mostly going to OK, well, you know, she's a black little girl. So we are going to have to talk about her differently. We're going to have to make sure that you're not putting certain things in her paperwork because it will affect her long term just because she's black. So the challenge is, first, start with me being a black parent, advocating for my black child because they perceive me as a certain way and they perceive her as a certain way.

Maria: So first, we have to get past that hurdle and then we talk about some of the challenges or deficits or, you know, characteristics or whatever you may call them for your child. But for her, her mostly she has anxiety, which is coupled with her autism. She is a perfectionist. So she wants to do things right. And because we're not perfect, we make mistakes. Our anxiety rises. And with that, which is why I personally don't use high functioning or level one with her, because when her anxiety rises, she could very well be, you know, a two or three at that point because she just shuts down and was not able to talk, is not able to get out of that anxiety-stricken moment at that time. So for her, her anxiety can guide where she's at and a level at any given time. So there's that that we're dealing with.

Maria: We're still dealing with speech delays. Of course, comprehension is one of the biggest things. She's in third grade now, so they take the statewide testing. So we've been dealing with comprehension related issues that are going to, of course, come into the room as she's taking those tests. So a lot of her goals that we are we have for her revolve around the comprehension and making sure she's set up to be able to navigate without us and advocate for herself without us when we're not there.

Mary: Yeah, which is a huge, huge and I agree, I don't like to say high functioning versus low functioning, and I did a whole podcast podcast number four is all about high functioning and low functioning because within each child is their strengths and needs. And sometimes that puts a lot of pressure on you and your little girl to be labeled as high functioning.

Mary: When you still have the needs, the strengths, the needs, you still have a long way to go. And, you know, there's just a lot of unchartered territory out there. So it sounds like you're doing really a great job with her. Now, you are married to a physician and you are married, and I'm assuming that you're not impoverished. But I think that's another big thing, is the socioeconomic status of especially single moms who may not be as fully educated as you are and in a different socioeconomic class. And so I'm sure that has some factor to it.

Maria: It does. We come from a place of privilege in that aspect of socioeconomic status. So financially, I am able to navigate and have access to certain things. Still with being black, you know, then there's those systems that come into place. But for the most part, I do have a privilege when it comes to that, for instance, going to the pediatric neurologist and being able to just pay out of pocket for thousands of dollars� worth of DNA testing. That was a privilege that we were able to do with no second thoughts and no. OK, well, what do we have to not get this month or do we just pay it, do the testing, you know, when our insurance basically covers nothing. So we pay out of pocket for our children's services? A lot of the times my son's in therapy and because he doesn't have a official diagnosis, insurance won't cover it.

Maria: So we have to pay out of pocket for him to get the services. So we have that ability to do that. Families, a lot of families. And when we're talking about the black community, we have a higher chance of being born into poverty and staying in poverty. So when we're looking at that, we're talking about I may not see the same primary care physician each time I take my child in for a well visit so something can get missed. I can go and see a different PCP for one year well visit. And they're saying now let's just see what happens at eighteen months and see if they're still having this developmental issue we need to look at. And see somebody different at eighteen months who doesn't know anything about what happened in the twelve months well visit. And again, they're saying, OK, look, let's wait and see what happened.

Maria: So we're talking about people not being able to communicate that across the boards when I'm seeing different physicians based on my insurance or based on who I can pay at that time. Also, the insurance issue, if they're not going to cover it, my child may not get that therapy because I may not be able to pay out of pocket. If I have to choose between sitting in a physician's office for a week or going to work to be able to pay for my necessities, I'm going to go to work and pay for my necessities. If I'm going to have to choose between sitting in a four-hour IEP meeting, which was exactly how long my IEP meeting was for my doctor versus going to work for those four hours and getting the money to be able to pay for food, water, light and shelter, I'm going to go to work.

Maria: So a lot of times we have to choose that over taking you to this therapy, over going to the IEP meeting over, hey, you can't have this therapy because we have to eat this month so that those definitely factor in. And a lot of times we can be seen as, oh, they're not involved because they're never around when sometimes it's just I'm working two jobs, so I can't be at PTA meetings, I can't be at the IEP meeting. I may have to do it by phone or I may not even be able to be there because my job isn't providing me the flexibility to do so. And I can't choose between eating and shelter versus therapy or that type meeting.

Mary: OK, yeah, and you were a mental health counselor before you had your daughter, and I'm assuming your daughter was your first born and so you already had a leg up in terms of knowing what goals and IEPs were and at risk and all those things that and I was in a similar situation, even though I was for Lucas was my first born. I worked in the neuro nursing fields and worked with rehab patients and worked with multidisciplinary teams. And we had team goals and, you know, and so it made sense. They got therapy for head injuries or strokes and then they got better slowly. And so, you know, a lot of white, black, brown parents don't have that background.

Mary: And that's I think it's a privilege for us to be able to advocate for others. It's also, it's a blessing that we did have these skills to hit the ground running. I went to two due process cases all the way up to federal court for Lucas. And, you know, it came to the point where I was like, I am fighting not just for Lucas, but I'm fighting for the single mom. English as a second language doesn't have a car, doesn't have a master's degree, doesn't have a computer. You know, it's like if they're pulling this stuff with me, we have to raise the bar not just for our own child, but for all of the children. So how has it had your work as a mental health counselor shifted or changed, or are you still working in that capacity? Are you working mostly with kids with autism or what do you do for a living?

Maria: So I am the CEO and founder of Autism in Black, which our mission is to support black parents who have a child that is autistic. On the flip side, we also train organizations to be more culturally responsive when it comes to the black disability community because it is different for us. So I created autism in black because after we got the diagnosis, I was like, OK, this is we are on Easy Street to get her therapy. And this is this is going to be great. And then my colleague started coming into my house and they were not taking our culture into consideration. They were just applying those interventions from school and like, well, if it doesn't work is because you're resistant as a parent. No, it's because you're not taking our culture into consideration. And then they didn't really check up on us as parents who are with this child. Twenty-four, seven.

Maria: You weren't checking in to see how I'm doing and then seeing that this wasn't just happening in my home, but across all kinds of with all friends and family, they were not getting this the service and they were not taking the culture into consideration. So I bridge the gap with autism in black to make sure that, one, the information is getting to our communities. Two as a not only a professional who is a mental health professional and does this as a profession. What there is that parent sign, that personal side is a parent who has a child who is autistic and I'm black and I can stand on my platform and say I have no shame in my child being autistic. And that's just what it is.

Maria: And knowing that they can see that representation of themselves, because I'm looking up on websites, I'm not seeing anybody that looks like me that represents me on these websites. So that is what autism in black is therefore, as well, to have that representation, to know that there is no shame in that there is no shame. It's not your fault, which is sometimes what we hear in that parent guilt, which I'm sure you know, that parent guilt to make parent shame is real and it's a lot to deal with. So having somebody who looks like you being able to say, you know, let's let the shame and guilt go is, you know, works wonders.

Maria: So that's what I do primarily now supporting the parents through advocacy, through IEP meetings, IEP reviews, through just having consultations of, OK, how do I talk to my black family about autism? You know, how do I now call parent when my partner does not, is in denial, does not believe in autism. How do we now create this co-parenting environment for our child? How do I help the siblings who are not quite understanding what's going on, you know, so autism and black bridges that gap with all of that information? And then we train organizations to be able to have health care professionals going into the communities and serve black family. Families with purpose and being able to serve them from a place that is respectful and culturally responsive.

Mary: Do you get grants? I know your website is Autism in Black.org. Do you get grants or how are you funded?

Maria: So we have a nonprofit side as well as a for profit side. So the nonprofit side is through donations, through grants and in my for profit side, through people who are going to pay for their service. You know, people who are like me, who are looking for services to help them and like, OK, well, here I'm going to pay for that. So, yeah, organizations pay us out of their pocket. So we have donations and then we take people off the wait list that may not be able to afford the service and then they're able to get the service. So we have a for profit and nonprofit site.

Mary: That's neat, that's neat, and you have a podcast called Autism in Black. Yes. And you also have a new book coming out, which is also about the same name, Autism in Black. And we are going to air this episode in Thanksgiving week during Thanksgiving week. And your book is available. Autism in Black is available for preorder on Black Friday.

Maria: Yes. Marketing thing to remember. Right. So and then the actual book is coming out early. Twenty, twenty-one. We're looking about February for the actual physical copies of the book. But yeah, preorders start Black Friday weekend for anybody who wants to go ahead and preorder and get all those extra goodies that come along with being in a pre-order. But the book is basically for parents like myself and not only parents, but the professionals as well to get that inside. Look at what it's like raising a black child who is autistic and systems in play that kind of hinder us from getting these diagnoses. Also, what goes through your mind when we get the diagnosis?

Maria: Talking to my black family about autism and what that looks like and how to navigate that conversation and how to navigate by the whole educational system, because as you and I know, that's a whole different beast when we're talking about going into school systems and advocating for an IEP. So it takes you through all of that and then also transitioning into adulthood and what that looks like traditionally for a black home and now what that means when having a child who has a disability.

Mary: Yeah. So if you could wave a magic wand and make the situation better for all children, especially for black children with autism, what would you wish for?

Maria: I would wish for better systems within the school system, the education system. There are many gaps. And I stand on my platform all day and talk about those gaps. And a lot of people are like, oh, my gosh, you're so hard against teachers. It's not even about teachers. I'm talking about the educational system because it's not even the teachers� fault, because they're just doing their job that they're told it goes way further than even the principal. We're talking about districts and then laws and lobbying against those policies. And for me, it would just be one if people actually went by the IDEA within the school system, because there's things that are stated in there. And then, you know, schools just don't care about that and they do their own thing. So having those systems out of play within the school system, because it makes it so much harder when we're just advocating for an equal playing field, we're not asking for extravagant things.

Maria: A lot of the times are just asking for 30 more minutes of speech therapy for my kid. Can you not do that? You know, so for that, I would take my magic wand and have all of that gone and have that access for children to make it better for them. And then on the black side, it would be to dismantle the systems that are in play that hinder us from accessing resources, that hinder us from getting a diagnosis earlier than what we're getting, because there is an18-month gap and we're talking about that overall. But when we're looking within certain cities, it might be eight or nine years. And then by that time, my kid may be in middle school, adulthood when they're getting these diagnosis, dismantling these systems that are hindering us from accessing early intervention services, from resources about Med waivers and all of that information that doesn't come to our community.

Mary: Yeah, I think the health care system and the educational system in general all over the United States and the world need reform. And as the research shows, it's just doubly affecting black children, more than white children. So I think those things would be great. Now, you do have in addition to your new book coming out, Autism in Black, you do have a current book for sale called Self Care Affirmation Journal. Can you tell me about that?

Maria: I can. So I created that book originally. I was creating it for my parents and caregivers of a child with a disability. But then I start to see that it is a problem all over when it comes to self-care and people not thinking they have time for self-care. Because, you know, when we're looking on social media, people like, oh yeah, I'm laying on the beach of my time. Why? That is a form of self-care type that I'm tired.

Maria: Is mental health care making sure we're setting boundaries, and that is the one of the most, you know, top tier health care things you can do is set boundaries so that people can't take advantage of, you know, a complete sentence. I give my self-permission to say no. It's so hard for people to say no. We get caught up in things that we don't want to do. Now we're overwhelmed. Now we're stressed because we're taking on all these things because we don't know how to say no. So I created the self-care affirmation book, which includes affirmations that can take you through a year or about two months, depending on how you use it. And it sets up that foundation to start a daily self-care routine. So it takes you through some self-work about granting yourself permission to do certain things, taking you out of your comfort zone with some things and giving yourself some grace, because we put a lot of pressure on ourselves to do a lot of things and being comfortable telling people, no, no, I don't have to even explain why I'm telling you, no, no is the complete sentence and I'm done and I'm not going to get in a back and forth about it. So that is why I created that workbook journal.

Mary: And where is that available on your website? On Amazon?

Maria: Yes, it's on Amazon. If you look up Maria Davis-Pierre, it'll come right up. Or you can go right to my website. For those of you who want a signed copy at AutisminBlack.org/selfcarebook.

Mary: OK, great. And we can link all that in the show notes, too. So we kind of covered the last question that I usually ask all my guests, because part of my podcast goals are for parents and professionals to be less stressed and lead happier lives. So, you know, I do think the Self Care Affirmation Journal sounds great with helping people kind of get in that mode. But do you have any two or three strategies of self-care and stress management that you use and often tell parents and professionals?

Maria: Yes, I tell people not to put so much pressure on gathering tool because a lot of times we are using them. We're just not utilizing them to their full potential. So when you're sitting in that car after work and you're taking those five minutes before you go in the house to switch from professional to now, all the other roles I play when I go in this house make that time intentional because that's your self-care time. If you wake up five minutes early or in my case, because I like to sleep in I stay up a little later after everybody's gone to bed and make that intentional time with myself to kind of wind down and decompress and have some thoughts of how my day went and what I want to do differently tomorrow. We're not saying take a whole week off for your vacation. While that is great, try to put in five or ten minutes a day and build that time up. If you have an hour to take a walk or read a book or take a bubble bath or even take a nap, do those things with intention because that's your self-care.

Mary: Yeah, I think those are excellent points. Excellent points. Well, I hope that our listeners out there really and I know I learned a ton just in terms of being aware of some of the issues, especially with black children that we are facing in the health care field, detection treatment in the schools and just having more awareness, I think is just the key. No matter what race or culture or religion you practice where you are in the world, I think your added insight will really be helpful.

Maria: Thank you. And we're actually also gearing up for the first autism and black virtual conference, which will happen April 1st through 3rd. But we're currently have our speakers open for and we'll still be open by the time this podcast airs for speakers who want to submit a proposal or sponsors. We're looking for sponsors as well. But if you're looking for more of these kinds of topics, it would definitely be covered through April 1st, through 3rd of the Autism and Black Virtual Conference. And it's completely virtual. And you could be home and watch it. And we will have replays available that if you bought the ticket, you'll have time to watch it, because like many of you, I can't sit down at the time that the alive is going on. So I have to come back later. And we like to cater to our parents and caregivers and professionals over at Autism in Black. So this is a conference you don't want to miss.

Mary: That sounds great. So we can look at that at the website. I appreciate you guys. Getting to know you a little bit better. I'm sure we'll have some collaboration moving forward, I think your wealth of information. So thanks for carving out some time to speak to us today.

Maria: Thank you for having me. I enjoyed it.