What is Autism in Black? – Special Ed On Special Ed Podcast

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

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.