Raising a child with Autism can be difficult for anyone, however, in the Black community there are additional challenges that may affect you. Although early intervention is key, African American children with autism are one to two years older than white children before they’re even diagnosed!
Maria Davis-Pierre is a Licensed Mental Health Counselor with extensive experience working with children on the spectrum and their families. In addition, Maria is the parent of a child with Autism. Maria’s passion is being an autism advocate with her mission being to bring awareness to the impact culture can have regarding an ASD diagnosis.
Maria tells us what we need to know about why Autism is different when it’s in Black. Join us to listen and learn!
More about Maria can be found on her website: https://www.autisminblack.org/about/
TRANSCRIPT (not proofread)
SUMMARY KEYWORDS
black, child, people, mm, autism, community, thinking, barriers, disabilities, stigmas, professionals, autistic, dealing, diagnosis, diagnosed, cultural competence, kid, culture, talking, parents
SPEAKERS
Maria Davis-Pierre, LMHC, Dana Jonson
Dana Jonson 00:02
Hello, and welcome to need to know with Dana Jonson. I’m your host, Dana Jonson and I’m here to give you the information you need to know to best advocate for your child. I’m a special education attorney in private practice, a former special education teacher and administrator, a current mom to four children with IPS and I myself have ADHD and dyslexia. So I have approached the world of disability and special education from many angles. And I’ll provide straightforward information about your rights and your school’s obligations, information from other professionals on many topics, as well as tips and tricks for working with your school district. My goal is to empower you through your journey. So if there’s anything you want to hear, comment on, join our Facebook group, it’s aptly named need to know with Dana Jonson, or you can email me at Dana at special ed dot life. Okay, let’s get started. So today I’m meeting with Maria Davis Pier, who is a licensed mental health counselor, and the founder of autism in black. Thank you for joining me, Marie, I really appreciate it.
Maria Davis-Pierre, LMHC 01:14
Thank you for having me. I’m excited to be here.
Dana Jonson 01:17
I know Well, I I came across you because what I was looking for actually, in my office was diversity training and cultural competence training. And so the woman I work with, and I were going through, you know, trying to find somebody to come into our office, and she actually said, Hey, I found this woman, autism and black. And I thought, you know, then suddenly, our whole focus shifted from, you know, getting which we’re still doing the competency training, we started to really focus on Oh, the autism component, like I have said it so many IP tables and, and talked about cultural competence, and talk about how that impacts students or not I sit it at IEP meetings. And I have people say, Well, you know, that’s just how their family is. That’s just how they talk. That’s just this or that. And I’m thinking, well, I feel like we’re mixing cultural issues and disability issues. And yet, it never occurred to me. Even though I know that within the school setting, it never really dawned on me that Oh, yeah, there really is a completely different layer. Mm hmm. For some parents, and families. And so I wanted to have you on here to talk to me about what is autism and black? And why am I talking to you about autism in the black?
02:34
Thank you for having me. I can jump right on in and talk about what autism in black is.
Dana Jonson 02:40
Great. How did this come to be? How did you come to be the founder of autism and black.
02:45
So like he said, I am a licensed mental health provider in the state of Florida. And prior to having my daughter my niche was not autism, but it was always with helping the black community. So prior to having her my niche was what they call at risk youth. So teens, you know, who are at risk for for juvenile delinquency. So that was my niche as well as black, perinatal mental health. But then I had my daughter who is now eight, and she is autistic. And about six months, I knew she was autistic, but at 10 months, so at six months, I started seeing sensory issues. I went to my husband who is a physician, but he is also Haitian. And he said, diagnose your clients don’t diagnose my kid. And I said, Okay. But at 10 months, she started to regress in her speech. And I knew at that point, okay, we need to get this ball rolling. So we went to our pediatrician, and her PD, just regular pediatrician that have developmental pediatrician and her pediatrician was like, you know, she was a preemie. Let’s give her some time. And I was like, No, you know, early intervention. Let’s, let’s see what it is. If it’s nothing, then it’s nothing. But you know, let’s go ahead and make sure so you know, they sent us to early steps, which every state has just different names, five to three early steps after three child fine. So since she was before three, it was early steps went there. Everybody’s testing her looking for those developmental markers. And they say, yes, you know, we do think she’s autistic, but she’s not three. So go ahead and go to a child, pediatric neurologist. Everybody who, you know, has dealt with this diagnosis journey probably knows finding a pediatric neurologist is not easy. There’s one. Yeah,
Dana Jonson 04:46
there’s like one, maybe two? I don’t know. Because no one can ever find one. Yeah. explain a little bit about why if we know she has autism, yeah. And she has no fee. They’ll find somebody else. Well, you
05:01
So my thinking is that, of course, as me and my husband have this conversation all the time, they were not comfortable diagnosing her prior to three, because with doctors, they like to be very sure, and very accurate. And because she wasn’t three, and at that time, you know, we’re still limited on research, and then you know, being black fat? Yeah. Um, you know, and, you know, they’re just, Oh, see if she grows out of it. Okay, well, she’s not. So let’s go ahead and try to find this neurologist. So, you know, at her age, it was three prior, you know, a couple years before that it was five. So you know, they went from five to three, but they’re still stressing, early intervention matters. And early intervention is prior to three. So it makes no sense that we’re saying early intervention, but I can’t diagnose her until she’s three. And we know that she needs a diagnosis to get certain interventions if insurance is going to cover it.
Dana Jonson 06:13
Right. And I think that’s an important point is that without that autism diagnosis, or an actual diagnosis, do not have access to services.
Maria Davis-Pierre, LMHC 06:22
Mm hmm.
Dana Jonson 06:23
It’s a really important piece. I I have a child, my oldest, actually, she’s adopted, we didn’t have medical records for her before the age of six. So I’ve been informed we can’t get an autism diagnosis, a very specific autism diagnosis. I moved on from that fight right now. Because we ultimately got into services she needed regardless. But she was 13. Mm hmm. And they were like, well, do we really want to label her it wasn’t about a label, it was a banner, I did not have access to certain services without that label. And that that is the problem is everyone says the needs guide the services, but that’s not always true.
07:01
Mm hmm. It’s utterly ridiculous, especially with autism not being a rare condition. We’re not looking at something that is so rare that we don’t have the research behind it. We’re looking at what is it now? One in 54. So I don’t understand why people are so intimidated by actually, given the diagnosis. We went to the neurologist, the pediatric neurologist that we found that one, um, yeah, we found him when we got there. And he made us do all of these, this DNA testing, that our insurance did not cover that we had to pay out of pocket for. Now, we have the resources to do that. A lot of families do not. And by this time, the stuff that he was looking for, we would have already known if she had the certain diagnosis, but we did it to roll out. He gets the test backings like yeah, so I do think she is autistic as well. But I also want to wait until she’s three. At that point. I’m just over it. So I just told him, okay, that’s fine. But I’m going to sit in your office every day, I’m going to greet you in the morning, I’ll see you when you end the day. I’ll be back the next morning, I’m going to sit here until you give my daughter this diagnosis till you give me my paperwork. And I can go on about my day. Because right now you’re just holding up the process. I sat in that office for a week, that Friday, he said, Take your paperwork, and please leave
Dana Jonson 08:33
snarf water out of my nose.
Maria Davis-Pierre, LMHC 08:36
And I did just that I took my favorite work, and I just left. That’s all you want it. That’s all I wanted.
Dana Jonson 08:43
It’s a good point. But you know, I think that’s so important for people to understand that that this isn’t about just going and getting a diagnosis. It’s not that easy. And you knew that if you sat there at least you felt on some level that if you sat there, you would get it. Not a lot of people would have taken that tact and that’s not right or wrong. And then fashional told me I’m not doing this for you. You have to go elsewhere. I’m like left. Mm hmm. And then just been stuck without that diagnosis. Yeah, so but you got it. Mm hmm. And so what was the next step?
09:17
I thought okay, now now here we are, we’re finally okay. And I was wrong. We guess then the next layer of it is dealing with service providers, dealing with therapists dealing with you know, medical professionals, health care professionals that are coming into your home or working on your child’s team that lack cultural competence, cultural responsiveness to our community. So we were dealing with that and I was seeing all of these,
Dana Jonson 09:47
what does that look like? You see initially go and then you have this cultural competence is not non existent.
09:53
Uh huh. That looked like so basically healthcare professionals were coming into our home and they did not take our culture into consideration. So things that would seemingly not bother other cultures bothers black culture. So, what I would mean by that is, for instance, if my child had in an accident, and the therapist went and went upstairs, went to her room, went in her room, got her some change of underwear, changed clothes, and put her on it, you know, they’re thinking they’re helping. We’re seeing it as you’re snooping around my house. And you know, you didn’t ask you just went in about your business and went through my home, you know, so that could be seen, as you know, something that you’re not taking culturally responsive, Miss, you know, I’m not taking your shoes off at the door, not including me and explained to me and to certain things. So this can be in other cultures, just besides the black culture. But this is what we’re talking about. You’re not taking our culture into consideration, applying interventions, without asking how the culture of my homeworks because you don’t know if that intervention is going to work? Well, within the culture of our home, if you haven’t even bothered to ask, how does there anything that we observe, as far as cultural traditions or holidays? You know, is there anything that you should know as far as our culture and how it works? That could be a barrier to you providing the services when you’re just coming in and providing interventions without thinking about that? We’re going to be seen as resistant.
Dana Jonson 11:38
Think when I’m hearing you, I’m thinking, you know, I make people take their shoes off.
Maria Davis-Pierre, LMHC 11:44
Mm hmm. I
Dana Jonson 11:44
think the difference that I’m hearing is that a therapist or service provider won’t enter my house without asking me.
Maria Davis-Pierre, LMHC 11:51
Mm hmm.
Dana Jonson 11:53
I think is that what I’m hearing the difference? I guess, in case you can’t tell, you don’t know. And you’re not. I’m white.
Maria Davis-Pierre, LMHC 12:00
So
Dana Jonson 12:02
for anyone who’s not aware, and so, but no, I’m thinking about that. I’ve never had some and say, should I take off my shoes? Is it okay? If I go there? Is it okay, if I go here, and I think that what I’m understanding and hearing and learning is that many people in the black community don’t get that level of respect, not at all, just walk into your house, and they’re there to help her fix you.
12:25
Exactly. And there’s also a level of distrust when it’s coming to the black community and healthcare professionals. So when you’re doing things that you’re you’re not, and you may have the best intention, but we’re seeing it as something else, because of the Miss trust when it comes to the health care community. You know, when we think of social workers, and therapists, we’re thinking you’re coming to get my kit, because that’s how it’s been within our communities. You know, with medical professionals, we’re thinking, Oh, you’re experimenting on us? Because that’s what it’s been, you know, so there’s that barrier. And if you’re just taking it upon yourself, and you have the best intention, but you’re taking it upon yourself to go through my house, I’m thinking you may be gathering evidence to take my kid from me. Right. Right. It’s a completely different
Dana Jonson 13:19
perspective, and we’re not looking at it. And I think the other component, which is probably a whole different podcast, is you don’t have enough black people in the profession.
13:33
We’re looking at lawyers, it’s 5%. If we’re looking at doctors, it’s 5%. You know, so that that’s what we’re looking at, we’re constantly outnumbered and professions.
Dana Jonson 13:44
Right? Right. So I think the important distinction that I want to make is that I think that when sometimes people hear well, there’s this cultural competence, it’s this idea that there’s some weird stuff going on in the black culture that we don’t know about now. Hmm. So essentially, that I mean, there can be cultural differences, and that you handle certain situations differently. Because, you know, I used to live in France, French people handle things differently than I do. It’s just a reality. Right? So but it’s that there’s a lack of respect for what never the cultural differences when they walk in and they see your skin color as black. Exactly. And knowing that there are barriers that are set up against us. And that is what is difficult for the we are oppressed as a culture. And we have to navigate through this oppression, we have to navigate through barriers, just to get justice, just to be on some sort of equal footing as other people as other communities. So we have to navigate through all of this. And still sometimes, you know, those
14:54
barriers still affect us. Yeah,
Dana Jonson 14:58
yeah. Absolutely. So as you’re going through this process, and now as a parent with children with disabilities, I also know that concept of being the hysterical mom. Mm hmm. Right. I’m labeled hysterical all the time. Mm hmm. I’m, you know, if I if I hold someone accountable and being unreasonable.
Maria Davis-Pierre, LMHC 15:21
Mm hmm.
Dana Jonson 15:21
If I’m upset because you did something wrong, I’m hysterical. Mm hmm. And if I expect you to do something that costs money, it’s because I have some high expectation that I deserve more. Mm hmm. And that is me and my white privilege walking into the IEP team. Mm hmm. Right. And I’m already facing that. I cry at least once a day. So, you know, and so you add this other layer that I think none of us are thinking about?
15:49
Mm hmm. I’m seeing as aggressive, loud, you know, using using my my blackness to try to make everybody racist.
Maria Davis-Pierre, LMHC 16:01
You know,
Dana Jonson 16:03
I like to just be like, I think you were there already.
16:06
Yeah, it’s like, you know, I can’t do that. But okay. But yeah, that’s how if I’m holding people accountable, then I’m seen as an angry black woman. Got it? Nobody can please this angry, angry black woman. That’s why she doesn’t have a husband, even though I do have a husband.
Dana Jonson 16:28
You know that because you’re at the table, we’re going to assume that you are the angry black single mom.
16:34
Exactly, exactly. And that’s what a lot of us have to think about. I have, I have to make sure my husband has seen. So they know that my kids have a dad that’s involved. That’s stuff I have to think about. I have to literally tell him, Hey, I know your patients may be real sick. However, make sure you’re there on meet the teacher day. So they can know that they have a black dad who’s involved. Right? That’s that stuff you have to think about?
Dana Jonson 17:02
That’s crazy, because the response you get will be different. Otherwise,
17:05
yes. Meanwhile, you know, the, the white parents don’t have to do that. And they will automatically be assumed to have and involve that. Meanwhile, I’ll get pity of Oh, my gosh, she has these three kids and the dads nowhere and you know, she has to take care of all these kids. I have a husband?
Dana Jonson 17:25
Well, and I mean, not for nothing. Even if you didn’t, Mm hmm. difference does that make does exactly competent as a parent?
17:35
Exactly. It well in the black community for for women, then we’re seen as Oh, she’s trying to get a check. You know, she can’t pay for anything. We’re all these stigmas come with being a black single mom, which a lot of these stigmas, of course are not true. And they apply to other cultures. There are white single moms who, you know, live on government assistance. There are Hispanic single moms who live on government assistance, Asian, single moms who live on government assistance. However, when it’s put towards the black community, that’s that’s all they see. So the stigmas are only portrayed on us as if we’re the only ones living it up on government assistance, when that is not true.
Dana Jonson 18:22
As a foster family, and we take whoever they send us, but the vast majority of the foster kids we’ve gotten are white, or away. And the level of surprise on people’s faces when I say no, these are the foster kids. Yeah. I’m not kidding. I get people go. Oh, mm. And I know exactly what’s going through their head. Yeah. You know, I think No, no, that’s okay. Wait, why kids end up in foster care, too?
18:48
Mm hmm. Yeah, they do. And, you know, it’s just these stigmas are constantly placed upon us, as if it just happens in our community. And these are the barriers that are that I’m talking about. These are the stigmas that I’m talking about. Because people see us for being black before anything else, then their biases start already. So before we even get to say anything, they’ve already formed a picture of what this is because we’re black. Research has shown that they don’t want to have conversations with black moms, about your child being autistic because they don’t want to deal with loud, aggressive blackmail. Interesting.
Dana Jonson 19:33
I just want to kind of repeat what we were just talking about to make sure that we don’t miss anything. But you’re saying that when you come to the that these stigmas are what people apply to you as a black person before they’ve even spoken to you
19:45
before they said a word they see black, because my name can be confusing, so they don’t know what they’re gonna get. And then they see black and then they’re like, okay,
Dana Jonson 19:56
yes, well know that yes. And then there’s a different There’s just this assumption then that that person is so so how did you then get to autism and black out of that develop.
20:09
So I saw what I was dealing with was a norm, not being asked as a parent, how you’re doing, that’s a normal across the board, when we’re dealing with disabilities, you know, the focus is on the child and not the parent at in black and looking for resources. We’re not finding any, our situations are unique and different, our worries are very different. When it comes to our children, and when we go in spaces that are not just us that involve white people, then we’re looking as if my stuff is too deep to talk about. So we’re not opening up to be able to talk about what we’re dealing with. Because I stuff is really deep, and it’s really terrifying. You know, you you may be upset over, you know, something that has to do with him not liking a particular shoe color, which is valid. And that’s your experience, our situation is, I don’t know if the police are going to kill my son tomorrow. So these are the fears that we want to open up and talk about in a group setting. But because it is deep, and people don’t quite understand, it doesn’t allow the space to do so.
Dana Jonson 21:27
Well. And I can only imagine if you’re sitting at a table and your team is primarily not black. Any time they’re not going to have any concept of these different components or stressors.
21:39
No, not at all. My my child’s IEP team is all white. The only black people in the room are me and my lawyer. Wow. Mm hmm.
Dana Jonson 21:52
And I have to say, I’ve been doing this for 15 years, and I don’t know that I personally know a black special ed lawyer.
Maria Davis-Pierre, LMHC 22:00
Mm hmm.
Dana Jonson 22:01
I’m a member of a national organization. I’ve done a lot of stuff. I actually just really don’t know that. I know one. Yeah. And and, you know, I hadn’t thought of it that way. Yeah. But that’s a completely different issue. And I do I talk sometimes, if children in the LGBTQ community and I have talked about trans culture. Mm hmm. And so I speak a lot about that, and how that impacts the IEP table. And it’s fascinating to me, the components of it, because it’s new to me. So, you know, I’m learning this that like, oh, we’re all sitting at this table together. But you guys genuinely have no clue that that would stress this kid out. Exactly. No. And, you know, it kind of reminds me of that, well, there’s no global warming, because I’m cold kind of thing. Yeah,
22:49
yeah. And one, one of those factors would be the actual police officer that’s in the schools, they don’t understand the impact that that has on black students. That is a scary situation, because we don’t know if we can trust all officers, we see this now, that brings a level of anxiety. You know, because I know, as a grown black woman, I am scared to call the police if there’s a situation that I need to call the police in, especially if I’m calling the police against the white person, I would really have to think about Should I call the police or not. So when we have white officers in the schools, and you know, these children are dealing with that, that is a level of anxiety, that could be PTSD for that particular kid, you know, so we’re seeing it as Oh, they’re in there to protect. But a lot of the times we have known history has shown they don’t protect us as black individuals. And that’s a scary situation. And that’s the person who’s supposed to protect your child.
Dana Jonson 23:57
So you’ve developed this area, this the company autism in black, and what is your focus? What what are you doing through that? How are you addressing this need that’s out there.
24:10
So we support black parents who have a child diagnosed with autism through various means. One is parent coaching. So we’re coaching them through, you know, what is a grief cycle of you know, when your child gets diagnosed, and we have to deal with now, my child isn’t who I had already planned on them to be when I got pregnant.
Dana Jonson 24:35
You have to go through a mourning period. Yeah, yeah. Not a bad person for me to mourn the life you thought you’re going to have. A person and and I think that’s a mother told me that years ago, when I was pregnant with my first child, actually, and she said, she said, she’s talking about her first child, and she said, I at that point, I hadn’t mourn the life I thought I’d have. And I was like, What are you talking? About It didn’t it wasn’t What do you mean? Choose? What do you think’s going to happen with your child? Right? Yeah, you know, you’re having a girl, what are your expectations? Mm hmm. And she said, you know, you wake up one day, and all of those expectations are gone. And there’s no roadmap.
25:14
Exactly. And then it’s lonely. And when you’re looking at websites, and none of the people look like you, it makes it even lonelier. You know, so we provide that coaching to help you wherever you are, on this journey, you know, to help, especially with shame, and guilt and frustration that we have to deal with in the black community. Because of the stigmas around disabilities, certain disabilities, you know, so we have to first work through that. And with religion being an anchor in the black community, for a lot of individuals, there’s also church heart that we may have to deal with. There’s also the fact that I may have to rely on these interventions that are going to help my child, but I’ve been taught to pray about it. And that’s supposed to help my child. So am I not believing in God? By getting these services? You know, so that is another thing we have to navigate. Interesting, interesting.
Dana Jonson 26:16
Wow. And thought of that piece either winning all day. So what does that look like when you have children or families reach out to you? And what about families who live in black communities that have more black people in their world in their school?
Maria Davis-Pierre, LMHC 26:37
Mm hmm.
Dana Jonson 26:38
That still requires a different level of support? Correct? You know, so how, how is that a little bit different? Or is it different, maybe it’s not different.
26:46
So when their majority of the people in the community are black, yes. Um, so there are stigmas within our community that we have to deal with, for instance, you know, dealing with the religion piece, we also have, you know, elders in our family, and how we respect people is different in the black community, we’re taught to not disrespect our elders, we’re taught to not challenge those in positions of authority, like your physician. So everything that I was doing, when I was advocating for my daughter, were things that I was not taught. And I was taught to do the opposite. So I’m taught to respect your opinion, because you’re the professional, not challenging. So these are things that we are not taught. So even if I’m living in a majority, black community, those who are professionals that I’m dealing with, highly likely are not black. So we still have to navigate that piece. And then again, there’s the stigmas in our community, stigmas with disability stigmas of, we don’t tell people, our business, we keep everything in our house. So talking to somebody like a therapist, we don’t do because you’re not supposed to know our business. You know, I had a friend who I was talking to, and she said that she as a girl would go and spend the night at her friend’s house, and they would, you know, be there all the time. And she didn’t know until they were near adulthood that her friend had a brother who had a disability, because they kept him away as a form of protection. Yes,
Dana Jonson 28:22
you know, we mean, it’s not it’s protection,
28:25
protecting our children, because we don’t know how people are going to be or act when they find out our child has a disability. You know, there’s so much shame that goes into a lot of that, because if my child has a behavior problem, and we go in public, and they have an autistic meltdown, or they have are being overwhelmed sensory overload, my children I looked at as that black mom can’t control her kid. So that’s what it’s looked upon, like, black people are supposed to control their kids, they’re not supposed to be in public acting like that, you know, so there’s these layers that we’re having to deal with. And when it comes to our community, they’re gonna look like oh, my God, look at this, this lady. That was my kid. wouldn’t do that. Beat the autism out of them. Can’t do that.
Dana Jonson 29:17
Id of reasons I might ask.
29:19
Exactly. So, you know, there’s the stigma that we have to navigate within our community. And then there’s a stigma that we have to navigate outside of our community. So it’s always overwhelming, frustrating and tiring, to have to navigate between these two things, especially when it’s your community that you hold dear if my grandma is watching my child because I’m, you know, may not have the resources to pay for childcare. My grandma isn’t looking for developmental delays with my child, they’re trying to make sure my child is happy fed, and not wet. Okay, and if I’m saying oh, you know, I’m going to take my child to, to make sure you know, she’s not Talking, then they’re gonna say, leave that baby alone. You You didn’t talk to your three, Grandma, you know, I probably should have been taken to see somebody if I wasn’t talking at three. But they’ll say stuff like this and say, you know, yo, they’ll catch up. You did you know. So these are the things that we’re looking at within our community because we don’t get the right information. We are constantly getting misinformation about what disabilities are and what diagnosis are. So we form our own, formulate our own opinions around what the misinformation is. I say autism, in certain black communities, they’re going to think intellectual disability, because of the, you know, the misinformation, they don’t know that that’s not the same thing. You know, so we’re talking about this movement towards acceptance, when there’s a lot of black people who are not even aware of what autism is, and how are they to accept something, if they don’t even know what it is? We haven’t gotten to awareness yet. Yeah, yeah. So we have to be aware, before we can move to acceptance, because if I don’t know something is exists. I can’t accept it. Right.
Dana Jonson 31:12
Right. And I, I think that, you know, we talked about, as you said, the acceptance and the awareness really struck me about what you’re saying the most is that you’re not able to find any providers, or advocates Really? Mm hmm. who understand your culture? Exactly. And so every single person you’re looking to find, doesn’t understand you.
31:39
Mm hm. Or they think it’s not important to include, or they think they understand you. Yeah, yeah. Then there’s that. And, and I’m here to tell you, as a black woman, I don’t understand every black person, I will never be competent. In black people. I’m always learning because there’s cultures within cultures. So that’s what I want people to understand. You should always be learning about different cultures, because it’s an ever learning process, because everybody is completely different.
Dana Jonson 32:12
Right? But I think that if you, as a person, as a community, as a race, as a culture, whatever it is, if your history is that when people come into your home, they’re going to take your children. Mm hm. If that’s what you’ve been told, if that’s what you’ve observed, Mm hmm. That’s what’s happening. And now you have a child where the only way to get them help is to let all these people into your home. a difficult thing. That’s a much different barrier, then, I mean, I can say, Well, I don’t like people coming into my house and going through my things, but I’m good. Yeah. And, and as a foster parent, and I do have DCF coming in and out of my house all the time. They they do. They don’t come in and scare me. Yeah,
33:00
I am a licensed therapist. My husband is a physician. And it terrifies us. Yeah, they’re my colleagues. And I still have a trust issue with it. Because I don’t know what your intent is. Because that’s what we know. Right? And that’s the difference in it. I am a well educated person. And this still terrifies me. It’s weaponized against us. Always, even in the school system. You know, they don’t like something we’ll call CPS, that is weaponized against us. And it’s a scary situation to have to think about. These people may take my kids away from me. Right?
Dana Jonson 33:41
So when parents contact you, and they find you and they said their child autism, and I’m black, and I’m trying to navigate this system? How do you connect them to the right resources? Do you have I mean, do you help them find the resources within their community? Do you have a list of resources that you share? Do you do trainings? How does that work?
34:04
So it depends on what they’re needing. One thing that I always work with parents on is not only knowing how to advocate for their children, but themselves. So we need to put that much effort in advocating for ourselves as we do our children, you know, so by teaching them that it’s okay to fire people that’s on your team. If they’re not working for you fire them, I fired a lot of people and I have no guilt in it. And I tell them, if you need to fire me, fire me as well. If I’m not going to if I’m not a good fit for the team, fire me, it’s okay. You have to do what’s best for your family. You know, so first being that kind of advocate setting boundaries. You know, that’s one thing that we as a society as a whole have an issue with setting boundaries sticking with them, making them realistic when It comes to the black family setting boundaries with our family is extremely difficult while we are over here at the acceptance phase and have, you know what the culture that we’re doing for our child and making sure there’s no shame and frustration, and none of that, and our children know that we’re okay. And they’re okay. And there’s nothing wrong with them. Our family may not be at that space. Yeah, well, truly so. But for us to set boundaries within our family is completely different. And it’s very difficult, especially when we depend on them to maybe, you know, be a resource to us. They’re a support system to us, culturally, we’re taught that’s our elders, you know, so it’s hard to navigate within that system for some families to say, Hey, I would appreciate if you didn’t do A, B, and C. So when my daughter was diagnosed, I completely told my family, either you’re on board or you’re not. Yeah, in or out. Yeah. And that is not the norm. But my family knows, I’m not the norm, you know, and they knew I was serious about it, you know, so but other people may not be able to do that. And if that’s not a realistic boundary for you don’t set it.
Dana Jonson 36:21
Right. And I think, you know, we’re talking about also the people around you not understanding or not not knowing the culture, I think, as a species, we have a need to understand thing, okay. And we don’t we try to go into what are my memories? And how can I connect to what you’re saying? So, as I’m listening to you speak, I’m thinking, Oh, yeah, I’ve had that experience over here. And yeah, I can, I can feel, but the reality is I have it. Right. I mean, yeah. Was my family private? Sure.
Maria Davis-Pierre, LMHC 36:52
Mm hmm.
Dana Jonson 36:52
You know, do we share our business? No, we do not vastly different reason. Yeah. And, and for different purposes, with a different goal. And so I can say who I know what that’s like, but I don’t know what it’s like. But if you’re sitting at the team, and you’re thinking, Oh, I know what that’s like. Mm hmm. And I think I understand you. I’m not trying to go any deeper. I’m just really excited that I found something to connect with you on. Yeah. In fact, I’m not connecting with you at all. You’re Hey, you know,
37:24
is it different, there are barriers that keep us from, like, people are saying, Oh, we want to we want equality. So we want equal footing, that’s still right, we’re still not getting equal footing, because in that equal footing, there still ditches and valleys that we have to go through to still be trying to get to the resources that you have, what we want is justice, we want to even the playing field, you know, so give me the tools to get through these barriers. So I can have the resources that you did,
Dana Jonson 37:59
right. But if everybody that you have to access to get those resources has a view of you, that is not accurate, then you really don’t have access to those resources, do you?
38:11
Not at all. And that’s why there’s a gap when it comes to our children getting diagnosed versus white children getting diagnosed. You know, that that’s why there are not as many black professionals as there are white professionals, because it’s extremely difficult to one, what is it 2% of the population is doctors of that 2% only 5% are black. Right, because of the barriers that it takes just for us to beat to get to that point. You know, that’s what we’re looking at, you know, and people are like, Oh, you know, I white privilege doesn’t exist, because, you know, I didn’t grow up rich, I didn’t. That’s not what white privilege is. The difference is, you don’t have barriers stopping you from being successful. I have barriers within a system that stops me from being successful, though that system isn’t working against you like it’s working against me just because I’m black.
Dana Jonson 39:17
And I think there’s a component that we forget to that I heard someone say the other day, which was, even if you can get to that place, do you want to be in a profession where nobody gets you?
Maria Davis-Pierre, LMHC 39:28
Mm hmm. Right?
Dana Jonson 39:29
You have the means, and you have the resources. When you get there. You have to so assimilate and not be yourself. If you’re just in that world. Mm hmm. To be successful in that world. Do you actually want to do that exam right? When I choose something and I decide I’m going to go be a lawyer? At no point did it occur to me that there wouldn’t be a whole bunch of other people out there just like me.
39:55
Mm hmm. I’m constantly one of the only black they therapists in the room, black female therapists, black male therapists or even, you know, fewer My husband is constantly in position where he is the only black physician in a room, you know, friends of ours who are lawyers and dentists there. That’s what we think about when we go to professional conferences and organizations. One of the first things I’m looking at how many black people are here? You know, where are my people? And let me tell you a few few of them, you know, that that we have to sit with the mental health profession as a whole, I’m here to tell you is very racist. The DSM was created by old white men. Yeah. It goes against a lot of us culturally, and what it looks like diagnosis look like, in our community. As a mental health professional, I’m constantly, one having to deal with that aspect of it, but have to deal with the aspect of the racism that is put against me as a professional in the field. Right? It’s difficult.
Dana Jonson 41:04
Yeah. So you’re getting it at every level. And as you said, you and your husband are professionals. Mm hmm. You’re hitting these barriers? Yeah. But as a professional are hitting these barriers. Mm hmm. Earth is a parent who doesn’t have that training, that skill, that experience going to get through this
41:25
exactly. If it was, if we were white, and I was a white therapist, and my husband was a white physician, I can guarantee you, it wouldn’t have taken that long for us to get our daughter diagnosed. Yeah, it would have been a totally different experience. We’re talking about two people who have the education and do the work. And it was difficult. But if we were wired, it would have been like that.
Dana Jonson 41:49
Right? And you’re not a one off that as is the norm, then you weren’t unusual in that process. The thing that was unusual that you and your husband was the experience, the background, the education, all of those components, that was the piece that was different, not how you were treated. Exactly. How you knew how to respond. That was the difference
42:11
in huh, yeah, the, you know, and they were not expecting that. And they were like, I need to get this crazy black lady out there. Because that’s, you know, I’m sure that’s what he was thinking, I need to get this crazy black lady out of my office, because she’s sitting here and she’s talking to everybody, I
Dana Jonson 42:27
love so much that you get that I can’t even tell you, I think that that is that is hard. And I think, especially when you talk with the the world of disability, so many people, parents of children with disabilities, we have so many struggles and barriers, and it’s so hard to then think that there’s somebody else who has more than I do. Mm hmm. You know, I think it is it’s hard to wrap your brain around it. And it has to be, you know, spoon fed. And it’s, it’s, as you said, we’re, thank God, I think in a place of really trying to raise awareness all around all across the board. And hopefully, that there will be some really serious systemic changes as a result. But in the interim, you know, we, especially children with disabilities, our most vulnerable population,
43:20
they are and that’s across the board. You know, we’re talking about not even race at this point, just across the board. The conversation never shifts to those who are disabled, those who are raising children who are disabled, and then in the black factor, and then that’s something completely different. So I’m not saying, you know, parents who are raising children who have disabilities, you know, are always heard, we’re not, oh, no, no, no, no, we’re not adding the least. But adding the black factor, and it makes that voice even smaller,
Dana Jonson 43:55
right. But my walking into a professionals office and telling them what to do, where to go, is going to get a vastly different response there.
Maria Davis-Pierre, LMHC 44:04
Yes, I probably have security calls on me.
Dana Jonson 44:08
And that’s just a reality. You know, I think that it’s interesting, because I think we, we all say, Well, you know, that’s why I asked you the question about being in the black community. If you’re in a primarily black community, do you still have these barriers? And the reason I asked that is because I think there’s this concept that, Oh, well, if you are then you you only have those problems when you’re dealing with the white people. You don’t have those problems when you’re over there. And no, as you said, If anyone’s ever tried to find a pediatric neurologist to deal with that, you know, whatever that is that we’re supposed to go find that unicorn on black. Yeah. I get calls after this. If people saying yes, they do exist, and here’s what are and we tell me
44:57
please don’t because I like you said you You don’t even know a special education attorneys who are black? I think I have the one. That’s the only one that’s in Florida. Yes.
Dana Jonson 45:09
I don’t even know if one and and that’s not okay. Maybe, you know, if you know, and again, that’s that’s a whole other conversation that’s going on around the world right now. And we are actively, at least in my office trying to do something about how we approach it. And I do hope that others are as well, especially in this field. And the more I hear, and the more I learn more, I realized how much I didn’t know. And and that is, that’s the biggest problem. And as a parent of children with disabilities, I deal with people all the time who don’t know, they don’t understand what I’m saying, That’s why I’m angry. That’s why I’m hysterical. You’re not listening to me, you’re not trusting me. And now I’m learning that I was doing the same thing to a whole group of people, subset of people within my community. And, you know, I’m really i am i’m hopeful. I’m hopeful right now. Well, in this minute asked me tomorrow might be different. But, so for somebody listening to this, and listening to us and saying, you know, I have a child with autism, and I’m not getting my resources, and I’m not I’m feeling like I’m up against this wall. And my fear, too, is that if somebody of color is saying that, and they talk to somebody who’s white, that white person might say, Oh, we all go through that. Yeah, we’re all going through that. We are all hitting barriers. We are all, you know, having that trouble and not wreck and then that person themselves won’t recognize how much harder their barriers are, you know, how, what can we do? What can we as professionals or parents do to, you know, help bridge that gap?
46:54
One is understanding that it is vastly different. We are in 2020, and the CDC just came out with stats that said, autism appear occurs, the prevalence is the same across races, it’s 2020. This is what they’re now coming out with saying, as if we didn’t know that it didn’t affect one race, more than the other, you know, but it’s 2020. And we’re just getting that fact. I know, Miss diagnosis across the board. So you may be dealing with difficulties. But our difficulties include our black boys are and our black girls now are more often misdiagnosed with a behavior disorder rather than autism. Because they didn’t think black people could be autistic. They thought it was always a behavior concern if that child is just bad, you know. So that’s what we’re coming from. Not that it’s not hard for you, it’s hard for us because there is so many barriers misdiagnosis, not getting the resources. Physicians not wanting to even have a conversation with me, even though they know my child is showing characteristics of someone who’s autistic, not wanting to have that conversation with me, because I’m black, or because they don’t believe a black child can be autistic. And it’s a behavior concern. So listen to the experiences of black people. Don’t create the narrative for us. If we’re telling you this is our story. This is our story. And this is why it’s difficult, know that racism didn’t just start in 20 we’ve been getting killed way before this, you know, but I am happy. Not happy that you know, we’re still getting killed, of course, but happy that it is now becoming a spotlight on it. So right people are now seeing Oh, this is a serious problem. We’re being killed by the droves. You know, take that information. The Internet. Yeah,
Dana Jonson 49:05
the internet has made it hard for us to sweep it under the rug anymore. People by us I mean,
49:11
yeah, the thing about this pandemic It is made people sit and now they sat and seeing how it is for us. George florid George George Floyd, excuse me was murdered. How many more have been murdered since him a lot. Many you know, and you’re into focus. This happens to us all the time. This is a fear that we’ve had way before 2020 way before I was born. Yeah, I’m 36 way before then. But now that you see this, don’t just see it in cheap a blind eye to it. helped me a good alley. Use your white privilege to change the systems, the barriers that we have to go against. That is a good alley. A good alley is not someone who is Speaking for us, listen to us, let us be the voices, and then use your white privilege to help us change these, these systems that are oppressing us. Start at your local levels, make sure your schools are getting culturally responsive trainings, make sure that they’re decolonizing their curriculum and that black children can have a black curriculum. There, we see ourselves in the books, and not just as slaves, you know, let’s decolonize that curriculum, let’s make sure that if we’re going to have officers in the school, that they are trained to not tell us that they are trained to know what somebody who is black and autistic characteristics, they might have to know that if my black child who of course, does not look autistic, because doesn’t have look, is having a interaction with you. And she has to process what you’re saying, she is not lying. She’s just trying to process what she’s saying. These are all things that need to happen, we need to go in our communities and make sure police officers are interacting with those who are who have disabilities, and those who are black and those who are black with disabilities, because that’s where they always mess up. In those situations, people who are disabled black people and black people with disabilities, you know, so we’re looking at the intersection of race and disability at all times, at least I am because my child has a disability, you know, so we if you’re wanting to be a good ally, do these things for us use your white privilege to help us change these systems, because it’s hurting us. It’s killing us every day. Literally. Mm hmm.
Dana Jonson 51:48
literally killing you.
Maria Davis-Pierre, LMHC 51:49
Mm hmm.
Dana Jonson 51:49
But I could not thank you enough for being on my podcast, because I really wanted to talk about this. And I’m so glad that I found you. I’m so glad I’m gonna get to do training with you to Gary, about that. So if somebody’s listening to this, and they say, I have to find Maria, that she’s she’s the only person I can talk to how do they find you?
52:09
www. Autism in black.org that has my email, my social media handles everything. So you go to the website, you’ll find me, okay, autism and
Dana Jonson 52:19
black.org. And I’m going to put all that information into my show notes as well. So anyone listening to this, who can’t remember it, or doesn’t write it down, although I love it, it’s very catchy. Then you can go to the show notes and find that site. Maria, thank you so much for joining me. I really appreciate it. And I’m sure our paths will cross again.
Maria Davis-Pierre, LMHC 52:38
Yes, thank you for having me. Thank you.
Dana Jonson 52:42
Thank you so much for joining me today. Please don’t forget to subscribe to this podcast so that you get notifications when new episodes come out. And I want to know what you want to know. So join our Facebook group also named need to know with Dana Jonson or you can email me at Dana at special ed dot life. But definitely reach out with your comments and questions and I’ll see you next time here on me to know with Dana Jonson have a fabulous day
