Not Your Mama's Autism (NYMA) – Details, episodes & analysis
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Not Your Mama's Autism (NYMA)
Lola Dada-Olley
Frequency: 1 episode/24d. Total Eps: 70

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Creating Cultures of Neuroinclusion: A Talk with Dr. Theresa Haskins
Episode 8
samedi 1 mars 2025 • Duration 49:41
Dr. Theresa Haskins, a professor, researcher, consultant, corporate executive, mom, wife, and advocate, joins the podcast. She shares her journey as an advocate for her children and a self-advocate. Dr. Haskins discusses the diagnosis process for her children and the challenges they faced. She also talks about her experience studying educational psychology and getting her PhD in education. She emphasizes the importance of choice and autonomy in education and the need for inclusive and differentiated learning approaches. Neuroinclusion means creating environments that respect and accept differences in how individuals engage, communicate, and interact with each other. It involves allowing multiple realities and ways of being to coexist without judgment or the need to change others. To achieve neuroinclusion, it is important to start young by building cultures of inclusion in schools and teaching children to respect and value diversity. Additionally, workplaces should prioritize neuroinclusion by creating equitable opportunities for neurodivergent individuals and allowing all employees to be their authentic selves. Neuroinclusion benefits everyone by fostering authenticity and creating a more accepting and inclusive society.
Keywords
advocate, diagnosis, children, educational psychology, PhD, choice, autonomy, inclusive education, differentiated learning, neuroinclusion, differences, respect, acceptance, diversity, inclusion, communication, engagement, authenticity, workplace, education
Takeaways
Dr. Theresa Haskins is an advocate for her children and a self-advocate.She shares her experience with the diagnosis process for her children and the challenges they faced.Studying educational psychology and getting her PhD in education taught her the importance of choice and autonomy in education.Dr. Haskins emphasizes the need for inclusive and differentiated learning approaches. Neuroinclusion means respecting and accepting differences in how individuals engage, communicate, and interact with each other.Starting young by building cultures of inclusion in schools is crucial for promoting neuroinclusion.Workplaces should prioritize neuroinclusion by creating equitable opportunities and allowing all employees to be their authentic selves.Neuroinclusion benefits everyone by fostering authenticity and creating a more accepting and inclusive society.
Chapters
00:00 Introduction and Background04:16 Discovering Giftedness08:04 The Importance of Choice and Autonomy in Education27:36 The Impact of Psychological Safety on Autistic Inclusion32:20 Increasing Empathy for More Inclusive Classrooms and Workplaces36:25 Corporations vs. Classrooms: The Inclusiveness Divide41:29 The Human Nature of Dividing and the Need for Neuroinclusion43:31 Defining Neuroinclusion: Acceptance and Respect for Differences45:18 Unconscious Bias and the Importance of Neuroinclusion47:58 Neuroinclusion in the Workplace: Authenticity and Equitable Opportunities
TRANSCRIPT
Lola (00:02)Hello, welcome. Welcome to the Not Your Mama's Autism podcast. I'm Lola Dada -Olley On the podcast today, we have within our midst, Dr. Theresa Haskins, a woman who wears many, many, many hats. Professor, researcher, consultant, corporate executive, mom, wife, advocate.
Welcome. Welcome to the podcast today. Thank you.
Theresa Haskins (00:35)Thanks for having me here. I think I'm in good company with a woman who wears many hats.
Lola (00:41)Perhaps, perhaps. I guess it takes one to know one, and we're matching, so we're both wearing flip.
Theresa Haskins (00:46)Yes, it does. And we matched,
and this was not planned, everyone. We just looked fabulous in blue.
Lola (00:50)It was, it was, it wasn't, it
wasn't. You know, when you're in sync, you're, you're, you're, you're in sync. So background wise, we're kind of alluding to, we have known each other for years, in work circles, we have known ourselves for years. But I'm so interested in just learning more about the, all this multiple, this multiple side of, these multiple sides of you. So you are.
Theresa Haskins (01:03)Mm -hmm.
Lola (01:21)Where do we even start? You are both an advocate for your children as well as a self advocate yourself. So let's kind of start a little bit at the beginning, depending on what your answer to this is, which diagnosis came first?
Theresa Haskins (01:42)Children.
Lola (01:43)children. And tell us how you and your children were all ultimately diagnosed.
Theresa Haskins (01:52)So it's an interesting thing because it actually does go back to my childhood. I have a son. I do have two sons, but that's not in my childhood. Let's go back and reframe that thought. I had a cousin with classic autism. And this is the early 80s and didn't really know what autism was.
had a lot of the stereotypical traits because he had more of a classic profile. He was a larger young man, had some intellectual difficulties, but he would end up graduating from high school. But I just remember him at holidays and family gatherings and how he was different. My mom was a kind of a special education associate. So we always had a propensity in helping,
with Special Olympics and those with IDD. And I was always exposed to the disability side of things. And so, when I was in high school, I remember helping other disabled individuals, whether they had neurodivergence or not, that wasn't really a thing. And I was part of the generation that if people did have learning differences, they went to things, we called it the van, right? So it was like,
outside
of the classroom. And so there was like a separation of things. I remember going to the van once, but then being sent back to the classroom. And it might be because I may have a profile more similar to my children, which would be twice exceptionalities. And so, you know, I would grow up and not always fit in and things got harder when I was more on my own and my parents were kind of off doing their things in high school.
And so I would get into college, I would become a note taker for people with disabilities. I've always had this need to help others and really found joy in that. I didn't know I was going to be a mom. And I thought I knew what I would know what being a parent was, because I like helped raise my cousins. I was like a nanny at the age of 10. By the way, that would never happen today, but it was most certainly a thing back then. And I would end up
really not having my first barn until I was in my late 20s and knew right away that he was different. I remember when he was just a little baby, he would just like kind of stare past me and my mom passed before I had children. So I'm a motherless mother and I'd read that book and I used to make the joke, he must be staring at mom because she's not here. She's like passed.
Lola (04:38)Hmm...
Yeah.
Theresa Haskins (04:40)But it would
Lola (04:41)Yeah.
Theresa Haskins (04:41)be when he was coming up to nine months, one year where he wasn't waving and he wasn't, he wasn't babbling like other children do. And then when we were coming towards his, I'd say one and a half second year, he wasn't talking, but he could speak. So at the age of two, and then definitely by three, he knew his alphabet. He could count to a hundred.
he could write in Wingdings. And I discovered that in the most interesting way. I was trying to teach him how to write the word frog and he was writing this alien language. And I remember calling my husband over going, my God, Brian, there's something wrong with him. And I was kind of upset and trying to work with the baby, my son, not the baby actually, but at the time he was and being like, Raiden, write it right. And he would grunt and kind of in his own way say, I am. And I'm like,
Lola (05:13)Mmm.
Yeah.
Theresa Haskins (05:36)husband saw it and he took it to the computer and typed the word frog in Times New Roman and then changed it to Wingdings and it said frog in Wingdings. He learned how to write and read Wingdings. So you definitely have this precocious child and I remember going to the doctor saying, you know, could he be autistic? And she's like, I don't know. So I actually kind of had to push
for him to even get the appointment to be diagnosed. They sent them for hearing checks first. They sent them for vision checks, pretty much ruling out any other physical issue before they'd even let us get near a psychiatrist. And then when we were doing the battery, a lot of the things that they're actually testing have more to do with intelligence than autism.
And so by the end of it, they're like, well, he's so smart. I know he's smart, but he doesn't say mama or hello. He just counts and says random words that have no context. And so they diagnosed him with something called PDDNOS, which is Pervasive Developmental Disorder, not otherwise specified, which means we don't really know, but there's something that we can't explain. So.
Lola (06:53)Lower.
Theresa Haskins (07:00)you know, we would go through the gamut of speech therapy and all these other things. And then my husband and I would decide to have another baby. And the new baby would come and he would start to grow up and Braden still did not talk, even though he could say some words. And one day when the baby was getting to the Todd, I don't want to call it the toddler age, cause they start trying to walk around a year, right? They start getting in this stuff and the baby was climbing up and getting your brain's computer.
And Braden was not happy and he was doing his grunt or whatever. And the baby was like insistent trying to pull up on that keyboard. And Braden said his first complete sentence, which was the win of the century. Mom, the baby's driving me nuts. And from that moment on, Braden's broke in complete sentences.
And braque is the best therapy money couldn't buy.
So Brock would continue to poke at his brother and they have are now like best friends. If anybody understands Braden, it's Brock and they have their own kind of inside jokes and things. So Braden is obviously he has autism, but he's also gifted. And I did a TED talk not too long ago about that experience, but
Lola (08:04)That is awesome.
Theresa Haskins (08:31)really long story short there, you know, his IQ is off the charts so much that in our state they stop the assessment after three days. They could have kept going. So we actually don't know how high his IQ could be because they were like, it's high enough for state standards, which was really close to 150. And wanted to put them in the kindergarten because his social skills are behind. So mom decided to go back to school, become an educational psychologist and leave homeschooled. We would learn when he
Lola (08:59)get a PhD.
Theresa Haskins (09:02)I got my doctorate eventually before a whole different set of reasons still related to him. I just, first it was like, I need to educate my kids. Like this is the thing that happens, parents and friends. You try to solve the problem in front of you at the time, not realizing that a whole new problem statement's going to come. So Braden is now I found out odd HD. So he has ADHD and autism and giftedness. He is that.
little Venn diagram you see. He is the trifecta. And then Brock has ADHD and he's also gifted. So both of my kids started college by the age of 13. So it's a very, very different thing. And so going through the battery with the children, because you said what came first, things that you don't think a lot about until you experience it with your children.
I have heard my entire life and I actually had a best friend that was, I think we were like eight that grabbed my face and said, what are you looking at when you're talking to people? And my husband has been saying it for years. Where are you looking? So eye contact has been a theme, meaning lack of it. And I even have job performance reviews that talk about my issues with eye contact and maintaining focus. By the way, I can hear everything you're saying without looking at you.
I've had a lot of feedback regarding my hyperverbalism. It's really great being a public speaker though. I'm never short on words. And just, I never realized, you know, I think about like my childhood and I remember having like lots of friends or at least I thought I did. And then when my parents divorced and I was kind of left on my own, which is around the time Asperger's would be diagnosed, 12, 13.
I remember they all just over, like they just all started like going away and I couldn't figure out why. And I would make new friends, but they never stayed for long. And being that I learned what I did about my children, I found out, my God.
I get it now and it's no big deal. Of course I didn't have, the good news is I was never looking for self acceptance. It was just more of the strangeness of like, where did they go? And I just didn't really worry about it. Cause I've always been so goal oriented. I always had a project or something. So I was never like overly worried about not having the social life, but it's just weird to see how different it manifests. And you know, like the little one has the
perfectionism anxiety that's the dhd that i have in. And so it's just interesting but my dad's dyslexic and so it's like a big neurodivergent family and. I think the trick is like finding where you fit and finding people that get you so i've had a i've like had bosses like people talk about masking.
wasn't familiar with that term until I got like more active in this space, but I have been told that I mirror people. So like I had a boss that said, do you realize that when you talk to people, you start to like emulate their demeanor? And I go, yeah, because it makes them comfortable because I read an FBI study that said that's how you get closer to people. So, you know, there's just what's true. So there's this interesting thing of, you know,
Lola (12:14)Mm -hmm.
Yeah.
Theresa Haskins (12:32)To me, masking is like saying, I'm going to put on this face and pretend to be this person. But I find that if people start talking quieter and they lean forward, then you might want to talk quietly and lean forward. But
Lola (12:42)I'm sorry.
Theresa Haskins (12:44)anyways, I had a boss that noticed that. And then my husband notices that if I talk to people from London too long, I start to adopt their dialect. So it's an interesting thing. And I would find out that that's called masking. But I always thought,
When I read about it, like masking is like an intentional thing. And that's why I call it mirroring, because I don't even know I'm doing it. So I think that that's what I think is interesting about the neurodivergent population is that it doesn't like.
Even when we talk about things that sound similar, how they manifest in those individuals may be very different. And because, you know, just going to the concept of masking, Braden does not mask. Even if I, you know, like I would say masking for him is remembering to say hello and how are you and to respond to people when he's being spoken to. But that's about as masking as he's going to get, right?
And so, you know, I've read about this concept and I think it's really common in women, but I don't, I don't really.
I mean, maybe we've been privileged enough that we could be odd and still be accepted. And in places where you can't be yourself, just don't stay. That's kind of been my rule in life. I had eight years under one horrible manager where it just wasn't working out. And I never allowed that to happen again. So I think you need to choose your environments wisely.
Lola (14:25)So based on what you just said about choosing your environment, you chose to take your children out of public school and move them into a home school environment. And then at one point, yeah, then at one point you went back to school to study educational psychology and get your PhD in education. So what did studying those areas teach you about your kids?
Theresa Haskins (14:38)Yeah, that was scary.
Yeah.
Lola (14:55)yourself and designing a curriculum with them in mind.
Theresa Haskins (15:01)So what's interesting is, and so this is for all of you that aspire to be special educators. Don't do that.
I have a reason. I have a reason. If you want to be an educator, be an educator. Be an educator that learns how to differentiate and support children. Be part of the change. So one of the things I learned in educational psychology, it's not because you shouldn't go into special education, because it is a field, but we need to do better. And if you're going to talk about inclusive education, then you need to become a general educator that knows how to support.
Lola (15:19)Yes, please.
Theresa Haskins (15:42)differentiated needs, which is what a special educator could do. And one of the, the reason why I dropped out of the special education program is the methodologies and approaches, at least in the state of Ohio that I would have to apply. I knew didn't work and I would not apply. And so I wanted to know how these things came to be and why they were, they were that way. And they're like, well, educational psychologists come up with those ideas.
everything we do has to be evidence -based. Meaning if you have an approach, it needs to be researched, studied, validated, and replicated before it could be used in a school system, because they don't want to do any harm, even though some of these methods do harm. And so that's when I decided to become an educational psychologist. And what I learned through my education is that special education research and general education research are not intertwined. So general educators are not
about self -directed differentiated learning, universal design. It's like a special topic for them. And special educators spend all their time learning about the human brain, how we learn, motivational theory. And you've got to ask yourself, why wouldn't every teacher be taught that? So one of the things that I spent a lot of time looking at was, unless you have an intellectual deficit, which is a completely different conversation.
Autistic, ADHD, dyslexic, Tourette's, all of them have the propensity, they can learn. There's nothing wrong cognitively with their brain, okay? I don't like calling autism a cognitive difference because people, cognition, right, is in terms of how we think, but we actually find with autism, they have superior memory. So we can't say that they actually have a deficit in learning and cognition.
And I have a book on here that says learning cognition with autism. And when I was reading it, you could tell that the population set was mostly focused on IDD. Well, autism isn't IDD. And so one of my first studies was in a second grade classroom with two autistic children that were in a general education environment that were underperforming in writing. And I believed it was the construct of the classroom, not their ability that was
developing them because I got very intrigued by this concept of motivational theory. And one of the things that people don't realize about motivation is it's directional. So when people say people lack motivation, it's not true. They just lack motivation to do what you want them to do. I'm motivated to play my video game and not clean my room. Motivation only stops if activity stops. And even then I could argue that you're just motivated to stay in bed. So unless you're in a catatonic state,
motivation is always happening, right? Are you motivated to get up and get a drink or are you not motivated to get up, right? And so if motivation is directional, then the question is why aren't these kids engaging, not do they lack an ability? Because they didn't have IDD issues. And so what I did is I created a choice construct and I was finding this worked well with my kids and any of you parents out there. Know that if you give your kids choices, they're more likely to cooperate.
Everybody thinks kids love to go to the ice cream parlor because it's ice cream. But I don't think any of you actually really think about kids love to get ice cream because it's one of the few places they go and they get unlimited choices. Rarely do you take your child to get ice cream and say, you can only have chocolate in a cone. You usually say, hey, honey, what flavor would you like? Would you like that in a cup or a cone?
Lola (19:21)Hmm.
Hmm.
you
Theresa Haskins (19:31)I would want to go where I'm treated with some respect and autonomy too. So I took that same unrelated to education concept of choice and autonomy, which by the way, every toddler tries to exert and is denied. And I took it in the classroom and I told the teacher, I need consistent writing assignments. And for two weeks, you're going to deliver your writing assignments. Obviously the topics change, but the complexity of them couldn't shift.
and I want you to deliver it and that's my control. And then for two weeks, you're going to do it my way. And my way was the kids get to sit where they want and they get to pick whatever color writing instrument and type of writing instrument they want. And I remember the teacher going, this is going to be chaos and this won't work. She goes, this is a stupid thing. I go, it's a choice. And we're giving them choices. There's rules. They can't talk to their friends. They have to engage with the writing assignment. General Ed.
and autistic students all together. And you do that for two weeks. And then it's an ABA study. Two weeks, we go back to your way. So we did that. And I interviewed the teacher before and I interviewed the teacher after and she admitted at the beginning, she's like, this isn't going to work. This is a waste of time, but we'll do it. We saw motivation to write for all students increased by 49%. Latency to write decreased.
everybody was more engaged and what she came back to say, she's like, I would have never thought that worked. I go, but these are second graders. They're told where to stand. They're told where to sit. You gave them some agency. And so one of the most interesting things is when people hear that like my focus is on autism and I homeschooled my kids, everybody's looking for this disability minded autism specific construct.
But what I found is that when we think somebody has autism or a disability, the first thing we do is start to control the situation and we take away their agency and sense of autonomy. And giving people choice and autonomy doesn't mean it's a free for all, but you create the sense of cooperation at a very early age. So it's not that you're, you know, it's not that.
they're not gonna do their schoolwork or they're not gonna clean the room, but you kind of, it's a negotiation. We can clean the room with music or we can clean the room with a drum or you can clean the room in silence. Like you're cleaning the room, but you get to choose your environment. And these seemingly simple things at a very early age made a big difference. And if any of you have ever had to negotiate with like a daughter who wants to wear a tutu to a
to an event where you didn't want her to wear a tutu, right? You're usually able to come up with some sort of compromise where everybody's happy. And by the way, why can't they wear a tutu? Like really. So, you know, know your battles. The other thing that really helped with gifted students is a lot of the research shows that gifted students get bored. I can relate to this.
And so if you get bored, you start acting out or you actually disengage with learning. And one of the worst things, so most gifted programs aren't really gifted students. They're just very bright students, which is fine. Meaning IQ is between like 115 and 127. And that's good. But what happens with these bright students is that we give them extra work. And then if you get somebody over 127, they're already bored.
by years. Busy work is not brain engaging, problem solving and allowing people to explore their issues. And so there's a guy named Sagatimitra. And he did the hole in the wall experiments in India. If you've ever saw Slumdog Millionaire, that movie was kind of based on this concept of if you give children access to technology and education, they will self -direct. And so a lot of people think that that means that
Children like had the propensity to just go off and learn and do on their own. There's structure that has to happen there. But if you think of anything you've loved in your life or a problem you needed to solve, how much digging did you do before you did it? So if you were planning your trip to Barcelona or if you wanted to be a ballerina, you started reading books and you started watching videos. So if you, like I had the luxury because we homeschooled the boys,
It's not because they didn't need, well, they were already reading and writing, but if they still had to learn math and they still had to learn history and there's all these things, but if they're in love with space this week, cause you know, it changes, but if they're in love with space this way, there's a lot of history around space. There's a lot of science around space. And if you can curate learning in a way that's interesting,
Lola (24:29)Mm -hmm.
Theresa Haskins (24:42)you could take that hyper -focused mind that we hear about neurodivergence have all the time and allow it to be the bridge to get them to learn all the things that we try to force feed in very structured routine ways in a school system. And so that's what I learned, which is really surprising to people is that you need to be willing to break out of your school of thought. So when I was doing my research for educational psychology,
I was pulling from special ed, I was pulling from psychology, I pulled from OD and business and my professors were like, nobody does that. I'm like, I'm doing it because we're all informing each other. And what's sad is that when I got into my doctoral program, you know, there were people in my program that were like, well, this is meant for, this is, you know.
pedagogy, and this is all directed for people in education and I'm in business. And I'm like, if you can't see the correlation between managers and teachers and employees and students, you're missing the game. Because first of all, you're diminishing the autonomy of students if you think that they should have less agency. And I know plenty of managers that treat their employees like children. So if you take leadership theory and education, androgogy and pedagogy,
Lola (25:39)Mmm. Mmm.
Theresa Haskins (25:59)you start to see themes and those themes start to show practices that if we did like the best leadership practices are the best education practices, right? And, and you know, when we think about having workplaces with proper constructs, adequate education, relevant to application, well, if a teacher could make learning relevant and give them the right constructs and individualize the support, you see, you hearing the themes.
And so I was able to go into a second grade classroom and then I was able to go into corporate offices and employ the exact same strategies and they always work. But what is interesting about it is they don't just work for the typical set. These are strategies that will take your disengaged, apathetic and demotivated people and will flip it. And it's all because I have found, we do it to disabled people.
Lola (26:33)and remember.
Theresa Haskins (26:55)We also do it to underperforming employees. The first thing we do when people don't do what we want them to do or worse, we start to think they can't. We micromanage. Well, micromanage is no different than helicopter parenting. So when you start to see this, there are patterns and they will address issues in all areas of life. We use different terms, but a helicopter parent is a micromanage.
Lola (27:25)So in these areas of research that you focus on, what do you love most about your research?
Theresa Haskins (27:36)What I love about the research the most is the people that I, the participants that bring the hypothesis to life. So it's one thing for me to see this pattern, right? I see like, obviously I'm seeing these dissonant patterns. I'm stealing from everything and somebody's like, but you haven't validated that. So.
Lola (27:54)Yeah.
Theresa Haskins (28:01)There was research that was done in psychological safety in the constructs, the 10 constructs that are required out of Harvard. And I was reading my dissertation the other day and we had the same findings. So now I have a hypothesis that I think would be pretty easy to test to say psychological workplaces would result in more autistic inclusive workplaces because the constructs are the same except for one, directive leadership. Autistic people need you to say what you mean, mean what you say, like they need direct.
communication. But well, in my study group level two. So what I love, I love learning. I love testing the hypothesis. I love discovering something I didn't see. One of the things in in one of my studies is I was so convinced that education was the solution in terms of why some of these managers were so great at retaining autistic employees, because guys, you can
hire autistic people, but the research over the last 15 years showed that it wasn't not saying that hiring isn't a barrier, but the research actually shows the retention is abysmal. So even if they get a job, they're not there after a year. So if you hire them and they leave, you haven't actually solved anything. And I was pretty convinced because I'm an educator at heart that it was like
Training of these managers is what made them great to be able to help these autistic adults retain employments at like two, three, five years later. It was a great finding and also a bit of a troubling finding that training was not the factor because 50 % of the managers that were in my study had no training or coaching support.
Lola (29:47)Mm.
Theresa Haskins (29:57)before bringing in those autistic people. And 50 % did. The common denominator across all of them is those that had training felt it relaxed them in being prepared. And those without training had a little more anxiety going into it. So that was the only thing training did was to make some of them feel more confident than others.
But the reason why they were all successful is because they were competent, adaptive leaders. Adaptive leadership was their common trait. And one of my subjects was honest. He goes, if I had an autistic employee when I was 20, he goes, I would have been horrible at it. He goes, I would have, he goes, things had to be done my way or the highway. I was rigid and I was hard on employees.
And I go, what made you change? Cause he wasn't one of the people that had had training, but he, you know, had like five different autistic employees on his team and two had been there for over five years. And I go, what changed? He goes, I had children. Cause now he's like in his 50s. He goes, I had children. He goes, and I had three children. And what I learned in my life is that what worked for the first didn't work for the second. And as they got older, he goes, I realized I knew less and I needed to listen more.
he goes, and I found that that worked in the workplace. So, you know, people with high EQ and empathy to reflect on not what I want, but what do people need? That's what all these managers had in common. They were like, you know, so I'm like, would you make that accommodation? They're like, why not? So these are going to be the managers that are more likely to work with their employees to find the solution, which leads you to the need for psychological safety, because if you don't have safety,
Lola (31:27)No.
Theresa Haskins (31:52)you can't have the conversations. And if you have a rigid micromanager, you're not going to get that flexibility. So I don't want to believe it's a personality type. I want to believe people can be taught, but there did seem to be a disposition. And that surprised me. And it was exciting and scary at the same time, because if it's a disposition, then we have a lot more work to do.
Lola (32:16)So to that point, we have a lot more work to do. If money was no object, if money was no object, you are well resourced, what would that work look like to increase empathy in order to get more inclusive classrooms and workplaces?
Theresa Haskins (32:20)Yes.
So I think it's a multi -phased approach. I was actually talking to somebody, I think today about this, I don't know. We need to start at the beginning. And to start at the beginning, I mean, we need to work on the new generation while we work on the current generation. Because one of the things I find is that when I look at schools, especially high school,
We still have cliques and we still have bullying and we still have exclusion, right? I mean, think of the Breakfast Club. Every single one of us can watch that movie. I know it's old, so I am dating myself, but we can be like, they're the jocks and the preps. And the fact that we can categorize people so quickly means that we are not as open minded as we want to be.
And if you want to really change the future, you need to change how people think and act with each other. And that starts young. So if you want to eradicate bias and discrimination, then you increase exposure and you work on building cultures of inclusion early. You make inclusion the standard and you work as parents, as educators to get them to be
the type of people we expect our employees and managers to be when they become adults. If you have children today that are in a school where there is the in and the out crowd and the popular and the nerd crowd or whatever they're called this week because the names are always changing. What magic dust do you think is going to happen between that 17 year old and the 22 year old in the office? So if you behave that way here,
you will carry that here. And then you make the work of Lola and I that much harder, because now we have to try to educate adults, or dogs learning new tricks, start young, right? So I have children that, you know, they're accepting of everything because that's how Dr. Mom raised them. And they weren't in normal environments to learn anything outside of what I wanted them.
learn about life. And it wasn't even until the George Floyd thing that they really understood the issues with race because, well, it wasn't an issue. Because we don't make right, you know, they have aunts and they have uncles and they have all these different things. And then I had to explain to them, you know, not everybody celebrates gay marriages and they have uncles that are gay. And, you know, so there's just all these things that go on. And
My first degree is in sociology, by the way. And I didn't mean for my family to be a sociological experiment, but the truth is, is the cultures and the constructs and terms and the words you choose to use or omit, meaning my kids didn't have the words for things because they weren't taught them. Now they know what the words are, but they still don't use them because it wasn't part of their vernacular. But it's the whole idea that we create social constructs.
And I can't control every family's life, but you can control what happens in schools. And the reason why I'm picking on schools is because corporate America does this better. The reason why corporations are more inclusive and more tolerant is because they demand it. Like if you don't behave and accept that corporate culture, you're going to get written up and you're probably going to end up getting fired. So.
Lola (36:22)So you think corporate environments are more inclusive than classrooms?
Theresa Haskins (36:24)Corporations are more inclusive.
or absolute.
I'm not saying they're more diverse, I'm saying they're more inclusive.
If you're at work, you're not allowed to exclude somebody because of race, religion, creed, or anything. If you're in the work team, you're on the work team, but schools do it all the time, every day on the playground. So, right, what would happen if we were educating students like we do at work about creating cultures of inclusion? Where's the culture of inclusion class for young people? Cultures of respect.
So, and why do we have to teach people who are 30 to do that? They should come in with those skills. So if I had all the money in the world.
Puppies learn better than old dogs. So start with them while they're young. If we miss that boat, that's when choosing workplaces and cultures becomes really important. One of the things in the neurodiversity movement and any disability movement is human rights, right? Like everybody should be treated with dignity and respect and human rights. I'm with you.
but we don't live in the future state. So that means that you should have those rights and people should respect you. But the reason why we're advocating is because there's obviously a gap and there's a problem. And so living in the current state that doesn't always respect and doesn't always have your best intentions, you know, they're not always there. Living in transition is very hard. And, you know, as an OD change manager,
you know, that's what I can tell you is transition is the most chaotic time. And so we're there, there are people. And for those of you that are listening, well, it just was on a podcast with me not too long ago. One of the things that we were talking about is that the transition of generations and like what autism used to be thought of.
And then we were part of the person first movement. Don't get mad everybody because people didn't see people with autism as people. That's why that happened. And now we're at where we can have identity first language because we have a whole generation of people that had more support, had more acceptance. I didn't say perfect, but more than previous generations to where they feel better about that identity and can own it. And you should be able to do that.
We also have more resources, protection and knowledge. We just got out of Neurodiversity Month and Autism Acceptance Month and there was something going around where somebody said we have to get past awareness and we need to go to acceptance and enablement. Well, I don't like enablement because I feel like that's implying we have to give people power and I feel like we already have power, but I don't think we're past awareness. I think social media gives you the illusion.
that more people get it than they do. And I know this because when I start programs with faculty members and teachers who you would think would be more aware of this space, and I say, tell me what you know about neurodiversity. I cannot tell me how many of these programs, and I don't even want to share the percentage of people that say, no, that's why I'm here. I want to know what it is. So I think we as a community need to be aware that we are 15 % ish of the world's population.
Lola (39:40)Mm -hmm.
Theresa Haskins (40:09)which means there is 85 % that is not in this club. And they're the one, they're the majority. So that's why we have minorities, majorities, they are the majority. And the world is designed with them in mind because most people design for themselves. So if you look at Lola and Teresa, hi Lola, our lives are designed with our families in mind. And the way I operate may not work for you, but that's how I designed my life. So.
Lola (40:29)No.
Theresa Haskins (40:39)I think magic wand, we start young. We start young and you find the pockets where we see more adaptive, empathetic and less toxicity because they're more ready to make those changes. So those are, those are your two groups and like little ripples in the water over time, they'll grow.
Let's start.
My kids are better than me, that's how I know. Like, I just see how they interact with humans.
Lola (41:04)Alright.
Theresa Haskins (41:12)It's completely different.
Lola (41:12)I think for most kids, yeah, I agree. I think for most kids, for most younger people, they don't come out of wounds not being inclusive. It's like an almost like a natural,
you see little kids and when they do start to notice differences, it doesn't tend to be in an insulting way.
until an adult introduces that to them.
Theresa Haskins (41:45)Right. Like they can see the world's variety. No different. Like we can see a box of colored crayons. But the question is, do you have a value assigned to the orange crayon versus the blue crayon? No. So when I tried to tell it's not because, you know, I don't like that word color blind or whatever. That's not it. It's have you assigned a value to a blonde or a brunette? Some people do.
Lola (42:07)Yeah, I don't, I, yeah.
Theresa Haskins (42:14)Other people don't, they just see it's a different hair color, it's hair. And that's what I'm talking about, guys. Like we can physically see differences and we can see blind and that isn't the difference. The difference is does that matter? When you see that person, do you think that they're less capable than another? And that's something you can teach. Or more importantly, ensure doesn't happen to be taught. Like I think, like you said Lola, if you let kids to just
I think, I think, well, I do think kids learn some things from society, I do, but I am a little Lord of the Flies that it is a bit of human nature. You could put a bunch of women that look just like me with my hair in the same blue shirt and within six months, they'll find a way to separate themselves. Like there's something about the human condition.
Lola (42:57)Yeah.
differentiate.
Theresa Haskins (43:16)that we feel the need to divide. And so in some ways we have to like teach ourselves to act against our human nature of.
Lola (43:26)Both can be true depending on the circumstances. Definitely a yes and. It's true. So with this in mind, what does neuroinclusion mean to you?
Theresa Haskins (43:30)Yeah. Yes, and.
So neuroinclusion means that in any environment, we have the space for differences in terms of how we engage, how we communicate.
how we just interact amongst each other with acceptance and grace. Because the truth is not every person, like there's still personalities, right? Like we're not always gonna like everybody and we're not gonna always get along, but just to respect that somebody else's way of being or engaging with the world, as long as they're not harming others, is valid. And
I always like to say, and people are like, I get that. And I'm like, no, you don't. Because I just saw, you know, a Twitter thread where people were arguing whether or not pineapple should be on pizza. And if you actually have a strong position on that, then you're not inclusive minded because no one's saying you have to eat it. And why do you feel compelled to tell somebody else how to live their life? There's no harm.
for somebody putting pineapple on pizza, if that's what they should desire. And so one of the first things we talk about, when we think about unconscious bias and people always go straight to like the big things like racism and gender discrimination, easy. You need to know the grandma you're bringing to work. You need to know your grandma and you need to know the construct of what you're bringing. And there are things you care about and there's things you don't. And so, you know,
Some people don't care how towels are folded. Other people will get in a long argument that they should be folded in squares versus rectangles versus rolling. Teresa would say focus on the objective. Clean towels, put away. Don't care how they're shaped, right? So neurodiversity is there's more than one way to fold a towel. Let's focus on the objective. Clean, folded in some formation, put away. That's neuroinclusion.
We live in a society that wants to fight which way the toilet paper should be hung on a spindle. So if you are rigid minded, you're not inclusive because inclusive means that multiple realities and ways of being and preferences, and by the way, autism is not a preference, it's just a neurological difference in wiring, can coexist. And I can respect that you roll towels and...
I
fold towels and we can coexist together, that they're both valid ways of being. And that's how I know most people aren't ready. So people who can actually say,
I like instructions verbally and you need them written down. I can do that. That's neuro inclusion. A lot of people talk about like respecting diversity of thought. I want you to be able to respect like some pretty basic stuff. Like I need post -it notes all over my desk and you don't. This looks like a mess to you, but this is organized for me. Is it harming you?
So neuroinclusion is allowing differences to actually exist in a way that we respect them, not judging them, not trying to change people to our ways. And that I think is a lot harder. And so, you know, next time you're loading the dishwasher and you feel compelled to correct your spouse because they have the plates turned the wrong way, you, hey.
Is it really gonna matter? I believe the jet spins all the way around. My husband, I do that all the time. He doesn't like high load the dishwasher and I don't like the way he puts dishes away. So we've divided and conquered. I put them away and he, but you have to figure out how to coexist. But I just think that neuro inclusion is respect of differences, truly respecting those differences, not tolerating that they might exist, but I'm gonna try to change your way of being.
And for those of you that are very excited about like autism employment initiatives, not to go here, but I'm going here. You know, be very mindful that they're really giving you an equitable opportunity for a job that they are not asking to do any more than a neurotypical would have to do to get the same job and that they aren't trying to ask you to change who you are to fit in. That is not a neuro inclusive company. So
Those are the things that I feel very strongly about. If you ever are asked to change who you are,
they may not be as neuro -inclusive. And by the way, neurotypical friends, you're asked to change all the time too, and we see you. And neuro -inclusion helps you be your authentic self as well. Because I think sometimes, typicals don't realize that if you create a neurodivergent friendly workplace, you just created a more authentic workplace for everybody.
Lola (49:00)Thank you. Thank you. It's a wonderful way to end. Come on in, the water's fine.
Theresa Haskins (49:03)Come to our side.
The water's
warm and we like are quirky and or we're not. I mean, and that's just what's so great about this space.
The spectrum is amazing and it can be heartbreaking. It can be exhilarating and everything in between.
I think it's a...
I think it's healthy to get past your tiny circle and get to know the world.
Thank you.
Serving Families in Crisis: A Conversation with Breanna Kelly-Higgs LCSW, BCBA
Episode 7
samedi 1 février 2025 • Duration 46:54
Breanna Kelly, a licensed social worker and BCBA, shares her journey into the field of autism and her passion for supporting individuals with co-occurring conditions. She emphasizes the importance of understanding and acknowledging the experiences and needs of individuals with disabilities, as well as the significance of cultural competence in providing effective care. Breanna discusses the challenges within the medical system and the need for collaboration and holistic approaches to support individuals with autism and mental health needs. She also highlights the importance of caregiver training and empowerment. Overall, Breanna advocates for systemic changes and increased resources to improve the lives of individuals with autism and co-occurring conditions.
Takeaways
Understanding and acknowledging the experiences and needs of individuals with disabilities is crucial in providing effective care.Cultural competence and relevance are important in supporting individuals from diverse backgrounds.The medical system needs reform to better support individuals with co-occurring conditions.Caregiver training and empowerment are essential in helping families navigate the challenges of raising a child with autism.Collaboration and holistic approaches are needed to provide comprehensive care for individuals with autism and mental health needs.Increased resources and systemic changes are necessary to improve the lives of individuals with autism and co-occurring conditions.
Chapters
00:00 Introduction and Background02:01 Personal Connection and Early Experiences08:49 Challenges within the Medical System12:02 Cultural Competence and Trauma-Informed Care19:00 Empowering Caregivers through Training23:33 Meeting Caregivers Where They Are30:16 Supporting Families and Building Relationships34:05 Reforming the Medical System41:38 Connecting with Others and Finding Resources
Transcript
Lola Dada-Olley (00:02)Brianna Kelly, thank you. Thank you so much for visiting us today on the Not Your Mama's Autism Podcast.
Breanna (00:11)Thank you for having me. I'm excited.
Lola Dada-Olley (00:16)Me too, me too. I just know you're going to drop the nuggets. The nuggets shall have nuggets. So with that in mind, let's learn a little bit more about you. So you are a true multi -hyphenate. You are a licensed social worker. You're a BCBA. Those not familiar with the term, board certified behavior analyst, and the owner in your spare time of synergy behavioral consulting.
Synergy behavioral consulting. But before we get to all these wonderful things, like what you're currently doing now, let's start, let's go back a little bit. Let's start from the beginning. What made you enter this field? Like, do you have a personal connection?
Breanna (00:46)Yeah.
So it goes back to the early 2000s. And so I was in high school and a freshman in high school actually, and I got invited over to this party that this Christian club was having at my school. And it was at an attached school, which I now know was an alternative school. And it had kids with severely profound, severe and profound disabilities, quote unquote behaviors. There were
pregnant girls. at that time, this was scary to me because we would only see these individuals like in between classes. And I went over there and the cha -cha slide, I think was out around that time. And we had the best time ever. Like doing the cha -cha slide, doing all the dances. And I will never forget, cause I was so fearful going over there. Like I just, didn't, I didn't know what to expect.
wow, these people are just like me. And it was the bond within the cha -cha slides and all the dances. I was like, these people are just like me. Why was I scared? And that was the catalyst for me. And so I then joined an organization called Best Buddies, which is an international organization that partners at all levels, middle school, high school, college.
individuals with intellectual disabilities with peers and we do all these activities. And so I joined that organization. I did that all through high school, went to college. didn't have a chat where we had a chapter, but it wasn't active and I lived it. I was like a college nonprofit person. had, we partnered with a nearby school. And now I think about it. I don't know if we have a school here like that,
It was specifically, I think, like kindergarten through 12th grade of kids, disabled kids. They had a post -secondary. Yeah, Tampa. I'm from Tampa. I went to school at Tallahassee. So I was, you know, small college town and I was like, this is what I want to do. Like I woke up every day. I mean, I was in college. I did the school thing, but this was my
Lola Dada-Olley (03:03)Where did you grow up? You live in Georgia now, right? Okay, Tampa,
Breanna (03:24)So I wanted to be a doctor and like halfway through I was like, this is not what I wanna do. I wanna support these individuals and that led me to social work. And in college are really cool. We had a cool assignment. So this is my personal connection. We had to interview like an elder. I interviewed my great grandmother, my grandmother's mother and learned that my great uncle,
And back then they had a lot of kids. They had a lot of kids. And was the whole that she raised them by herself. And she had a set of twins. And my Uncle Kenny has cerebral palsy. He probably would have been diagnosed with lots of other things now. He was taken from her. So the state tricked her into signing over her rights. And he was put in an institution.
So this was 50s maybe. And she told me how they stole him back. And when I heard this story, I was like, okay, God, this is what you want me to do. This is why I'm here. And so she talks about him being in the floor and feces and they had to break him out and she had to fight. There was legal fights. And I just knew, I was like, this is what I'm supposed to be doing. So that led to social work.
Yeah, so that's kind of the origin story. And I just keep getting these signs that I'm where I'm supposed to be, if that makes sense. Yeah, and now I have lots of personal connections, family members who are autistic or have different disabilities. My mother had a pretty, who passed away about 10 years ago, profound medical disability as well. And so it's kind of
Lola Dada-Olley (04:58)Absolutely.
Breanna (05:17)been where I
Lola Dada-Olley (05:23)Wow, that story about you're literally your elders. It's the generational story that you have.
Breanna (05:34)Mm -hmm. And it keeps coming up. So that's how I know it's not, you know, it wasn't a choice. I don't think I have a choice. I'm in a transition phase right now, but I know where I will be. I just don't know what it'll look like. So we'll see. I'm excited to see what's next.
Lola Dada-Olley (05:54)Yeah, put a pin in that because that's very intriguing. Let's kind of walk through. So you have a graduate degree. And so when you were studying your graduate and your graduate program, what were you focused on? What was your specialization? And is it at all linked to what your focus is
Breanna (05:57)Yeah.
Yeah, so I came to Georgia specifically for macro based social work. So systems levels change, organizational nonprofit, and that was as a result of the work I did with that organization in college. So I intended to be doing that nonprofit work. Like that's what I thought I would be doing. And then I just ended up in different unique spaces. I'm a graduate of the LEND program.
which is leadership, education, and neural developmental disabilities training program. And so that totally shifted my perspective. And it's an interdisciplinary cohort. Your colleagues are professionals. They're people with lived experience. That changed my trajectory. And then I started working for the university. And so I got to do all this traveling and training, and I loved that. And then transition to crisis services, which I never
thought I never thought I would be there, but we were serving people in the most vulnerable spaces, like for someone to have to call for emergency help or, you know, to be at a point where they can't support their loved one. And so that kind of shaped that for me. And it's not something that I thought I would be doing, but being in those spaces got me to understand some of the challenges of our systems.
Lola Dada-Olley (07:40)So when you say crisis intervention, for those who may not be familiar, what do you mean by crisis intervention?
Breanna (07:47)So in our state, in every state it's different. So if someone is maybe having a psychiatric crisis or behavioral crisis to where their behavior has put them at danger, they put someone else in danger, they may be eloped, they're experiencing psychosis, any type of presentation in which they are unsafe, they can call 911 or they can call the specialized mobile crisis team. And so we would go out and assess, make recommendations.
Some individuals will be removed from the home and we would support them in crisis homes. So this is for folks with those really high acuity needs. it became, you know, was quite interesting at times. Always exciting things, but families needed that level of support and they weren't always comfortable calling first responders. And so we essentially were first responders for some of those individuals.
Lola Dada-Olley (08:49)What did that experience teach
Breanna (08:52)Well, I think my brain is forever changed as a result of being in that space and working in psychiatric hospitals. I'm very hyper vigilant now. I'm very empathetic. I'm always checking the scene out. But it taught me a lot about the lack of services in our state. It taught me a lot about what it looks like when families are
and when they have nothing else and when they weren't given support. It taught me a lot about how important it is to teach skills early on and to accept people early on and to get them access to their community early on because a lot of the folks that we saw were, you know, that teenage age where it's like, it's cute anymore and I can't manage it or adults.
Lola Dada-Olley (09:47)Yeah.
Breanna (09:49)who, know, quite honestly, they weren't given self autonomy and they're using these distress behaviors to communicate their wants and needs. Or, you know, those folks with the co -occurring mental health and developmental disabilities that we don't know, you know, we don't adequately support, they're just kind of getting bounced around and hospitalized and medicated. And so I just
to look at how the sausage was made, unfortunately. And so it really shapes how I support families now because I've seen this totally other end of it and I try to prevent people from getting there.
Lola Dada-Olley (10:32)from getting there, So you know how the movie ends, in other words. So you're trying to do your best to prevent where you can.
Breanna (10:42)Yeah, it's very burdensome to understand the system so intimately. It's painful. Even when tell parents, when parents do all the best things, or caregivers do all the best things, and you're like, hey, when they become an adult, you're going to hit that cliff, right? You're going to hit that cliff. So let's figure out how to do it with the least amount of damage as
So
Lola Dada-Olley (11:10)So just to level set for those who may not have heard the term the cliff, I first heard the term the cliff from my son's child psychologist. And it refers to the lack of services the older an individual with disabilities gets. How, just like you said, Breanna, like the way our society is set
When someone's no longer cute, when they've outgrown, know, when that preteen teenager age comes, the resources start to dwindle and it becomes less and less and less. And it leaves families more and more isolated.
So that leads me to you are also well versed in trauma informed care. What is that exactly?
Breanna (12:02)Yeah, so it's, I like to put it in simplest terms because there's a lot of discussion around this right now. But for me, it's just simply understanding and acknowledging that people have had learning histories and experiences and some may not be ideals, some may be aversive and that those experiences shape how they navigate the world. And so as I'm training,
other colleagues or professionals, sometimes I like to reframe it and tell them to ask not what did you do, but what happened to you. Because a lot of times when we're looking at something, we're trained to look at it from a deficit model or a symptomatic perspective. I tell people to be profoundly curious about that person's history.
about their learning experience and they may not be able to tell us and we may not ever be able to find out but let's kind of support them in a way and so we are not making it worse and that we also acknowledge that what we're seeing may be a result of something else and maybe we need to create a space so they feel safe to be who they
Lola Dada-Olley (13:18)So you going beyond the behavior like this, you sit at the intersection of social work and applied behavior analysis. How do you think that helps shape your practice and helps shape what you do
Breanna (13:38)So social work is my lens, right? And not only just social work, but a Black African -centered social work perspective. And I think that's so important because we had to unlearn a lot of stuff in school as well. And I'm a proud member of the National Association of Black Social Workers. And I think they grew me up professionally and as a young adult. And so really centering African -centered values,
autonomy, cooperative economics. I think that's the lens in which I look at the world. And so applied behavior analysis is kind of a specialty, a specialty, I guess, set of skills that I think can be helpful. But I always kind of fall back on that humanistic approach that social work gives me. And it can be challenging because ABA does not have, we're getting a lot of pushback right now.
and meaningfully so, rightfully so on some of it. But I also at times feel like an outcast in ABA because I am the one who is coming from this kind of comprehensive ecological perspective and we are not historically taught that. So I'm having to carve out spaces and navigate sometimes conversations with colleagues who don't necessarily agree with that.
wider lens, I guess. But we're making it work, I guess.
Lola Dada-Olley (15:13)Hmm. That was loaded. Let's dig deeper. Let's dig deeper. You touched upon what is a buzzword to some, what is an integral part of their practice for others. What is culturally competent care and what does that mean to
Breanna (15:35)So I like to think about kind of cultural relevance, because I don't ever think we can become competent and that's contextual. When I think about cultural relevance is how is it relevant or socially meaningful to whoever you're supporting. And that can change. That can change based on what region you live in and what your background is. And so having the desire.
in the curiosity to try to pair whatever you're doing with whatever this person's need is, whether that's, you know, disability culture or Black culture, which is not monolithic or regional. So that's kind of how I think about it, is how is it relevant to those who you're serving? I don't ever think we can become competent. And I think I specifically focus on
culturally appropriate services for Black and individuals of African descent because it oftentimes is not considered in intervention spaces, in the medical space. So I find myself being an advocate for that in lots of different ways.
Lola Dada-Olley (16:51)For those not familiar with culturally competent care, could you provide some examples of a way upon which you would approach the practice differently when you actually take into account the wholeness, the fullness of the person who you're interacting
Breanna (17:11)So you behind me, you see kind of my books that I keep on the wall and making sure that the folks that I serve see reflections of themselves and whatever materials I'm serving, I'm using to support them. I also think regardless of background is giving up that positional power of being the authority. And so normally when I start working with a family
you're the expert. I have a certain set of skills. You're the expert. So really starting to pour into them, encourage them, build their confidence, because they likely have met. I know what the system does, right? So you've met other people who probably have not done this for you before. And so I'm here to support you. What do we need this to look like? And there can be times when we disagree.
And we will just have to figure out what it looks like. And what's important to you in terms of whatever our goal is? What's important to you? How do we make this meaningful for you? What would motivate you? I think those are all really important things. Honoring people's language and their dialect and not trying to teach them things that are not part of their community.
So when I was working recently with some young teens, young autistic teens, and so I support my staff in talking to them in street language, because they're gonna hear it at school. And so when you talk about social skills training, right, air quotes, their peers are gonna be saying different things. And so we use that language with them so that they've heard it before.
really speaking to a family's fears about approaching the system. And so I enjoy working with particularly black caregivers or couples and acknowledging that they are fearful. And here's why you are probably fearful. And here's the reasons why you probably should be. And here are some examples of what we're going to do.
to maybe mitigate some of these concerns that you have. And so I think those are just kind of general, just speaking to folks like you want to be spoken to, like just kind of basic humanistic things.
Lola Dada-Olley (19:44)in your personal, professional experience, so the mix of the two, what do you think your field gets right and what do you think still needs to improve when it comes to care for people with co -occurring conditions?
Breanna (20:07)I think co -occurring is really unique. And when I say co -occurring, because it's used in different spaces, we hear it with substance use. Specifically talking about individuals who have developmental disabilities and mental health needs is, from a systematic perspective, we are not set up to do any of this. So most states have their developmental disability lane and their mental health lane.
you pay for your people and you pay for your people. But we know statistically that if an individual, disabled individual comes in contact with the system at all, they are more likely to experience some type of trauma or aversion or mental health condition as a result of just being, you know, getting services, right? And so one, we have these two siloed things and they don't, the people literally do not talk to each other most times and they don't understand
the needs of the other population. And that was my experience here in Georgia as well, you know, when I worked in a government position. And so just understanding, I think, is where we start. And then looking at how folks get access to services, because there's exclusionary criteria. In my state, if you have a certain developmental disability, you can't get access to mental health support. And that's a lot of the fight that we have right now.
Lola Dada-Olley (21:31)Hmm...
Breanna (21:35)So you can't get what you need. then, I'm very passionate about that. I'm talking to mental health providers and they're like, well, autism is their primary diagnosis, so they can't have this. I'm like, they have anxiety and they have sexual abuse and they have this. And so educating those providers that the modality that you use if adapted for those who need it can work.
I think we need more research in those areas as well because a lot of our mental health diagnosing treatment is based on verbal interviews. It's based on the ability to be able to engage in conversation. And so that doesn't work for a lot of folks. And then when we use kind of these behavior management strategies, psychiatric hospitals, or these really restricted levels of care, when we could just support people in meaningful ways,
you know, they wouldn't have to get to a psych hospital if we evaluated them appropriately in the ER and we realized they had GI issues and it wasn't a psychiatric issue or you know, they're being abused. They're not acting out for no reason. So I think a reform in medical, the medical system, our system and access to services would be the best place to start. And a lot of what I do is awareness.
particularly with BCBAs is, hey, this person is communicating something, let's try to figure out what it is. And then a lot of times we figured out and we have nowhere to refer them. So how can we do what we know is right within our scope of practice, essentially.
Lola Dada-Olley (23:20)You give, so you mentioned training, part of your training is caregiver training. So what aspects do you focus on most and
Breanna (23:33)It depends on the audience. I enjoy talking about co -occurring diagnoses and just acknowledging that disabled folks have psychiatric needs as well. I enjoy that. I enjoy talking to caregivers and normalizing their experience because a lot of times they feel like they're the only
They are like, Miss Brianna, you wouldn't believe what happens. Well, actually, that's pretty normal. Or that's pretty expected. let's, you know, how can we support it so that you stay mentally well? Let's talk about some of
some of the risk factors or some uniquenesses of having a Black child in this space. And let's also talk about services and supports. And so I really enjoy coaching caregivers on how to advocate for themselves and their child. I really enjoy that because they oftentimes are so defeated and parents are given so much information that's wrong and just teaching them to question it.
I listen to you and your husband talk about insurance, right? Teaching them all of those things, which isn't always traditional ABA or traditional social work, but I would argue that equipping people with skills to get their needs met is actually a great opportunity. So I really enjoy doing
Lola Dada-Olley (25:11)You certainly take a holistic approach to things. And you're right, the system's very much set up to be in silos, even though we are whole people. Like you and I are two people sitting at multiple intersectionalities, yet society may only view us as one thing, but we are truly, we're all multi -hyphenates in various ways. So.
With that in mind, you know, we're thinking of intersectionality, we're thinking about dichotomy, we're thinking about the layers having the layers, right? When you're giving caregiver training, and these are caregivers, particularly of Black kids, Black or people of color, how do you hold the tension between giving these families hope and also giving them a realistic picture?
of the type of advocacy that is coming ahead of
Breanna (26:15)So I think it comes from that assessment piece is me really identifying where they are. I've worked with families. I worked in a developmental clinic from like point of diagnosis to adult, you know, caring for our adult siblings. So it depends on where they are at and what they desire. Sometimes we are not in a space. And I had to learn that really early on because I'm so passionate about
I wanted to give all the resources. And that wasn't always great. And so just realizing where they are and what they need. And again, I think that comes from that self -determination piece is I'm going to tell you what I can offer you. I'm going to tell you what I think. And you let me know when you're ready. And we can go as deep into it as we need to. Or we can kind you can say, hey, Ms. Breanna, I can't do this today. OK, that's great.
hey, this is what I can do. And I oftentimes work with single caregiver homes. And so for me, looking at it holistically, right, it could be interpreted by some as, this parent isn't doing this. They're not implementing this. You got to pay the bills. You got to take care of yourself. You got to take care of this kid. You got to do all these things. So my approach is tell me what you can do. And it can be really small.
Let's just start with this one thing. And that's just kind of how I start. So just figuring out where they are and then meeting them where they are. And sometimes I'm not the best fit. we go through, people go through cycles. Some people want to kind of deny it. Some people have different approaches and that's fine. I'm not angry. I can just tell you what I have to give and you make the option. It's your option to choose. So it doesn't always work out and that's okay too.
Lola Dada-Olley (28:11)So, said you meet the caregivers where they are and depending on the situation, you kind of adjust based on where they are and some caregivers are in denial. I'm glad you brought up the D word. So, knowing that the sooner you can introduce interventions, the better off the outcomes will be later on in the adult versions of these kids.
How do you hold that tension of kind of holding the hand while also letting them know that time is going?
Breanna (28:51)through relationship building. So like that's where we have to start is from the beginning. So I've already told you, you know, I got a certain set of skills and when you're ready, we can tap into it. And for some folks, before I start talking about intervention or change, I start from this acceptance piece because I feel like a lot of where folks get like a lot of it's the unknown, right?
Lola Dada-Olley (29:12)Mmm, that's
Breanna (29:18)Well, sometimes I hear really wild things like, well, some parents are not kind. They're like, she's so weird and I can't do this and she's embarrassing me. Well, let's talk about when your child did this, this is maybe what they were experiencing. If they're open to that. And sometimes it's kind of chipping away, but just starting from there is that understanding piece of like, some parents are blaming themselves, right?
Like I did this or, you know, so I just start from that general education. And it's so interesting because I have a family who I worked with and I met them two, three years ago and she was ready to terminate her parental rights. was, she had, he had been told he wasn't diagnosed till like 12. He had anger issues. He had ODD, he had all of this. She was, she was leaving work.
Last year he was in a school play. This year he's in camp. She sent me pictures. He's in camp. She said, you gave me hope. And what it was is she was like, he's so disrespectful. She didn't understand. was just her. Like your child doesn't understand the social hierarchy of authority. So when he's questioning you, it really is him trying to understand, not him trying to be disrespectful. And
us really working through her understanding her child and actually getting to like him again, because I don't think a lot of parents want to talk about there may be times where you don't actually like your child. And I've had families talking to about that to her saying, I'm hopeful. He's at school. He has friends. He was just in a play and we were all at the play and he did phenomenal. So for her, it started at like understanding that because she thought she had failed him.
And it was just, he had unmet needs and he was a black boy and he got medicated. He got labeled with everything else and she thought she was a bad
Lola Dada-Olley (31:24)What were some of the incremental steps you employed that allowed this success story to flourish?
Breanna (31:35)Well, it wasn't just me, it was a team. So I got to work with some staff who, again, that's a relationship, right? They trusted me because this young boy was referred to me from a psych hospital. And a lot of my staff were used to working with early intervention kids. And I was like, hey, we're going to do it. Our first session, he was aggressive towards me for several hours. And so we just decided to take a really
Lola Dada-Olley (31:37)Mm -hmm.
Breanna (32:04)a natural environment training approach, help him understand himself because at this point his self -esteem, I'm bad, I got anger issues. So we introduced autism to him. We showed him sensory experiences. We took him in the community and there were times where it wasn't great, but we were out there supporting him in his most challenging times in the community.
teaching him about his feelings. We were teaching him natural consequences. You can't talk to Ms. Breonna any type of way and expect it to be okay, right? This is how other people are gonna treat you as well. so building up his self -esteem, building up mom's confidence in her skills, and just kind of really natural environment training with him, building a relationship with the school. And so he had it in
I think we were able to kind of support it and nurture it and bring it out. But he's in summer camp. He had been kicked out of all of them before for a decade. So we're doing great. So yeah.
Lola Dada-Olley (33:22)Let me ask
question about we know that a lot of this stems from not enough resources in these communities and all communities really when it comes to individuals with disabilities. So I'm going to ask you to imagine here if money was no object, no object, you could do anything you want you wanted to in the great state of Georgia, in the great state of Texas, where I live throughout the country, money was no object.
Where would you invest in the autism mental health and IBD spaces?
Breanna (34:05)call this the social work magic wand question.
Lola Dada-Olley (34:08)Yes.
Breanna (34:12)I would start with the medical system because unfortunately that's where a lot of this, that's where these diagnoses and these criteria is. Like that's where I would start is educating those providers, changing that curriculum of what this can look like. And so this young boy didn't present, you I was just meant to, he didn't present, right? Like he wasn't,
Me and his mom said he wasn't disabled enough, right? He didn't look autistic. And so he got, he saw lots of doctors. He saw lots of providers. He saw lots of therapists. He was in school and nobody picked up on the fact that like he wasn't just being bad. He was overstimulated. And so if we start there from a foundational educational place, right? And I think that's also got to do with how we value people as a system.
And that's a whole nother conversation around Western values. But everybody has, everybody can contribute. And so just really trying to figure out what is it that this person is communicating. And so if we like build that into what people learn, right? And the system that's supposed to be helping, I think that would be really helpful. I think paying people who do the work enough.
Lola Dada-Olley (35:13)Yes.
Breanna (35:36)is really important as well. We have a provider shortage in general, and direct care staff. And again, that goes back to how we value disabled people. We don't. And if you start looking at the intersection of like disability history and Black history in our country, can tell you a lot about why we're here, right? In Black bodies and disabled bodies and, you know, how we don't consider them whole. And
So starting with the education piece and then creating services for people that are holistic. And we used to do, I think back in the 80s and 90s, we used to do more of the medical kind of collaborative services where providers could get compensated. Like if I wanted to partner with the psychiatrist and I wanted to partner with the SLP,
We used to do more of that collaborative care and people could get reimbursed. I think we need to bring that back because we're all kind of guessing and throwing things at the wall. And if we are all seeing this whole person, we should be communicating. But people can't get reimbursed for that. So they don't do it. Right. So those are a few places I would
Lola Dada-Olley (37:00)Breaking down the silos is a very common theme and I talk about that too, about like for instance when you move across the country and you decide, you realize that the states of America are not fully united because the services in one state vary very differently, very, very, very different.
Breanna (37:24)Mm -hmm.
Lola Dada-Olley (37:24)and we're all in the same country allegedly and you move to another state you're like wow this zip code has changed everything so that would be another way start all over
Breanna (37:32)And you have to start over. You have to start completely
over. We used to get so many crisis calls for people asking where they could
Lola Dada-Olley (37:42)Mmm.
Breanna (37:45)and people calling to move to Georgia. And I have to be honest, you might want to really look into services and options. So, yeah.
Lola Dada-Olley (37:49)Yeah, might want to think that through. Yeah, yeah, yeah,
yeah. Years ago, particularly when we first touched down in Texas and people were only focused on the lower cost of housing. And I said, if you have a child with a disability that needs services, think that through again, because you might have a cheaper house at the expense of everything else.
So that is for sure. So for families looking for resources in your locale, where you're at, how could they start to at least get a baseline of what's out there for them?
Breanna (38:40)Well, my state is unique in that care coordination is not guaranteed. And if you have straight Medicaid, you don't have care coordination. So ideally, a care coordinator would be able to assist you. What I need is families who get a psychological with three pages of resources and links and things to follow up and they don't know where to start.
So if you have a funder who uses case management or care coordination, then I would start there. I always tell families, particularly this is one of the first things I do after they receive a diagnosis or their child's, their or their child's level of care changes is to connect with another person with the lived experience. Because sometimes folks isolate, know, some people have different experiences. And so just to have a peer who's been through it or who knows, you know, that's going to be so much better than me talking to you. I mean, I've been in the field for a really long time, but I think families have different lived experiences and are more resourceful than you know, because you have no choice. So that's one of the places. I also say to start because there's stuff you know, folks find out about things quicker. And then every state has a technical assistance organization. Now they vary by state. So here in Georgia, we have a place called parent to parent.
and they have kind of databases and you can call and you're talking again to another parent. And I think that can be really reassuring at times. And so those are just some of them. I tend to tell people to be mindful, although I know it's hard about just jumping on the internet and joining all the groups and joining all the listservs and listening to all the influencers, particularly now, I think it's confusing.
Lola Dada-Olley (40:53)Yeah
I know. It's a nice way to put it. Some of those influencers is just straight up misinformation. Like, it's just... boy.
Breanna (41:02)for folks.
Yeah, and
I encourage families to, while I think access to information is great, you have to center what is going to be significant and meaningful to your family because there's going to be all types of recommendations, all types of things. And so again, I think having a peer or somebody who's been through it or somebody who has similar experiences with you is really, really helpful because
I've had parents almost have breakdowns themselves because they're like, well, Miss Brianna, I heard ABA is bad. I want to do general parenting. I've had families go to other countries and get stem cell. There's so many things out there and it is so overwhelming. So that's why I think building families up is so important because you're you're going to get information overload.
Lola Dada-Olley (41:43)Hello.
I tell parents, because we've definitely been down that road, we have this framework. It's like, okay, are we doing the best we can with the information we have at the time within the monetary and geographic limitations we have? And if we can answer that, yes, we do our
And we try really, really hard not to look back because if you do that for too long, it prevents any progress moving forward. Much easier said than done, but that's the framework we use because it's so, so easy to get overwhelmed. It's so easy.
Breanna (42:33)Mm -hmm.
Lola Dada-Olley (42:42)Brianna, thank you. You are a wealth of knowledge. Where can people find you if they're looking for resources in your area?
Breanna (42:49)So you can find me at synergybehaviorconsulting .com. I'm on Instagram and Facebook, LinkedIn. I'm all in the internet and pretty responsive. And if I can't provide support, likely will send you to someone who may fit your needs.
Lola Dada-Olley (43:11)Thank you so much. Thank
2023: Our Longest, Yet Shortest, Year To Date
Episode 8
jeudi 21 décembre 2023 • Duration 26:52
Our 2023 year in review episode is here. We discuss the ups and downs that is/was 2023, including a life changing family trip to Barcelona, an ice storm that prevented travel to our daughter's therapy, a short term caregiver crisis, the myth of work-life balance and so much more.
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Redefining Success For Yourself After Trauma : A Talk With Addis Gonte
Episode 7
mercredi 29 novembre 2023 • Duration 38:40
In this episode, I speak with Addis Gonte, Non-Profit CEO and Disability Inclusion Advocate. We talk about how a car accident changed his life, resulting in traumatic brain and spinal cord injuries. We also speak on how his life changing accident led him on a new path to founding a non-profit, called Able Mindset, and many lessons learned along the way.
https://notyourmamasautism.com/
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"Tweendom", Puberty and Autism: An Interesting Cocktail
Episode 6
lundi 18 septembre 2023 • Duration 26:15
In this episode, my husband, Tosan, and I have a conversation about the transition we've made and are making into the start of adolescence. Our kids, a boy and a girl, are now both pre-teens and our daughter has an intellectual disability. We talk about the special considerations we have to think through and make as we raise neurodivergent children who are undergoing a new life phase. One day at a time.
This episode is also available in video form on YouTube.
https://notyourmamasautism.com/
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Autism, Self-Advocacy, Therapy and Everything in Between: A Talk With Janelle Johnson
Episode 5
mercredi 9 août 2023 • Duration 46:07
In this episode, we speak with Janelle Johnson, a licensed marriage and family therapist, Founder of Bridges Family Life Center, PLLC , Mom, Wife and Self-Advocate. We talk about her own autism self-diagnosis, how she became a therapist, her own philosophy on "masking", her decision to eventually self-ID, raising an autistic child and her views on so much more.
As always, we appreciate the support. If you like what you hear, please share, subscribe and give our podcast a 5 star rating on Apple Podcasts.
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A Candid Conversation with Psychologist and Parent Advocate, Dr. Tade Akere
Episode 4
dimanche 9 juillet 2023 • Duration 53:47
In this episode, we speak with Dr. Tade Akere, a mother, wife, businesswoman turned psychologist and advocate. She is the mother of an adult autistic son and a neurodivergent and mental health advocate serving patients through her Illinois based practice. She is also the host of the webseries Dr. Tade Talks and the author of the book, No! Not My Son!: An African Mother's Journey Through Life with Autism.
In this episode, we walk through her family's autism journey, cultural stigma associated with a diagnosis within her Nigerian-American household, how she decided to enter the field of psychology after becoming a parent caregiver and the advice she gives others on the journey (along with some other nuggets).
I appreciated her candor and hope you get something out of this episode. This episode is also available in video on YouTube.
https://notyourmamasautism.com/
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Healthcare Delivery, Parenting, Advocacy and a Little Forgiveness Along the Way
Episode 3
mardi 6 juin 2023 • Duration 37:18
In this episode, I speak with Tim Markle, the Southern Regional Center Director at the University of Wisconsin-Madison Waisman Center. We speak about delivery of health care to diverse populations, his own experience as a dad to an autistic son and how understanding the power of forgiveness has allowed him to become a better person, father, husband and advocate.
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A Later in Life Diagnosis: A Talk with Attorney and Self-Advocate LaNasha Houze
Episode 2
mercredi 3 mai 2023 • Duration 28:08
In Season 6, Episode 2 of the Not Your Mama's Autism Podcast, I speak with attorney, self-advocate and former law school classmate, LaNasha Houze. In this episode, LaNasha speaks to how she ended up obtaining her later in life ADHD diagnosis, the subsequent realizations she made when it comes to her neurodivergence and provides some advice to those who wish to know more about this journey.
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Shifting Mindset: The Myth of Work/Life Balance
Episode 1
mercredi 5 avril 2023 • Duration 27:33
Welcome to Season 6 of the Not Your Mama's Autism Podcast, now brought to you in both audio and video form. In addition to listening to our podcast on your favorite podcast platform, now you can view new episodes on You Tube. After a long hiatus, we start our new season talking through our parenting journey through various seasons that includes/included: stay at home parenthood, demanding careers and various therapy schedules associated with our family's autism journey.
One day at a time.
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