Episode 12
The Black neurodivergent experience
The Black Neurodivergent Experience
People say things like "just be yourself" with the expectation that you’ll just snap your fingers and turn the volume down on generations of pressure to fit in.
But what does that even mean when your existence as 'yourself' stops conversations cold? When walking into every room means holding your breath, trying to shrink for comfort, or shapeshifting for someone else’s peace of mind? When you’re told your needs... your honest-to-goodness, human, biological and psychological needs... are either too much or entirely invisible?
This week, we’re going in. All the way in.
I sat down with Dr Carl Frizell, a phenomenal clinician, with his lived expertise in internal medicine, oncology, mental health and, yes, the absolute truth about thriving as a Black neurodivergent professional.
Carl joined me for a conversation about what it means to fight for belonging, to crave quality over quantity, to be different—and not broken—in every aspect of his life.
Want to talk intersectionality? Carl brings the receipts. Want to explore why so many Black and BIPOC kids are mis-labeled as “difficult” (or worse) instead of autistic? Or what happens when advocacy is weaponized against you?
Want to hear the story of a patient—"The Difficult One"—who was never the problem, but simply demanded her humanity be respected?
We’re covering all of it.
(And, yes, Carl really did become a better clinician because he lived every single word he now tells his patients.)
If you’ve ever questioned whether there’s space for your whole self, especially in systems built for someone else’s definition of acceptable—this is your episode.
Love you. Mean it.
Dr Carl Frizell's links:
Insta: https://www.instagram.com/cafrizell_pac/
Timestamped summary
00:00 Embracing Autism: My Turning Point
03:10 Neurodivergent Advocacy and Speaking Journey
08:01 Seeking Acceptance by Mimicry
12:55 Redefining "Normal" for Health
15:04 Clinical Judgment in Autism Diagnostics
19:20 Patient-Centered Caregiver Approach
23:10 Advocacy in Healthcare Matters
27:00 Supportive Parents Foster Success
29:30 Misdiagnosis Due to Cultural Bias
33:51 Humanizing Lived Experiences Validates Life
34:56 Embracing Whole Identity Acceptance
39:16 Embrace Self-Compassion and Growth
41:17 "Transparent Living on Instagram"
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Transcript
And I learned to grant myself grace as I moved forward.
Speaker A:And like, I was doing things to survive when I was younger, but now I'm intentionally going to put myself in places where I can thrive.
Speaker A:So at that point, I stopped trying to do those things so people will finally like me.
Speaker A:I just started doing things that made me happy.
Speaker A:And those people who wanted to stay, they stayed around.
Speaker A:And those who wanted to go, I just said, bye.
Speaker A:Bye.
Speaker B:Hey, everybody.
Speaker B:Thanks for being with us again.
Speaker B:As you know, I'm L2.
Speaker B:Yes, you can call me L2.
Speaker B:And this week we are talking with a friend of mine and an incredible clinician at lb.
Speaker B:He is helping us build out our care programs specifically for black neurodivergent individuals.
Speaker B:He was introduced to me by one of our other clinicians who is also helping us build out that program.
Speaker B:And I was told I absolutely needed to meet this person because he believes in everything that we believe in and wants to build out this program with us.
Speaker B:And then not only was that, like, incredibly true, but also he wore a really excellent bow tie, which is not like an immediate sign off, but it certainly doesn't hurt.
Speaker B:So anybody who can rock a great bow tie is, like, a plus in my book.
Speaker B:So, Carl, thank you so much for being here and for also for being an incredible physician's assistant on our team.
Speaker B:I'd love to have you give a little introduction of yourself, and then I want to talk more about both your personal experiences and your experiences as a clinician.
Speaker A:Sure.
Speaker A:So, hi, everyone.
Speaker A:My name is Carla Frizzell.
Speaker A:I'm originally from Holmes County, Mississippi, the Mississippi Delta area.
Speaker A:But I currently live in Nashville, Tennessee.
Speaker A:I'm a physician assistant.
Speaker A: d as a physician assistant in: Speaker A: autism diagnosis in December: Speaker A:And that allowed me to see that my life now makes sense.
Speaker A:Because I always used this quote, all my life, I had to fight.
Speaker A:And that comes from the color Purple, because when you have multiple identities, specifically multiple identities that are marginalized, you find yourself fighting against many individuals to be accepted.
Speaker A: ceived my autism diagnosis in: Speaker A:And there's other people who are like me, who are struggling to be accepted by society.
Speaker A: is I received at PA school in: Speaker A:I love to write academically, I love to present.
Speaker A:So I just took a chance and submitted an article in response to a publication and the title of it is I spent my whole life striving to be normal, Internalized stigma and perceived impact of diagnosis autistic adults.
Speaker A:And when it was accepted, they let me know my voice needs to be heard.
Speaker A:So at that point I started becoming a neurodivergent self advocate.
Speaker A:I have been invited to speak at various conferences.
Speaker A:I recently spoke at the American Academy of Pas a couple of weeks ago in April I spoke at Autism in Black.
Speaker A:And next month I speak in Canada at the International association for Medical Science Educators with a colleague of mine who's also a late diagnosed autistic person about providing support for neurodivergent faculty, staff and students in medical education.
Speaker A:So I'm definitely glad to be here and thank you for having me.
Speaker B:Every time you talk, I'm so impressed and I just like want to like hang out and just like listen and absorb because you make it just everything.
Speaker B:I love it.
Speaker B:Anyway, you said something and I'm sure this is a big conversation, but you said something that I want to start talking about, which is your struggle to be normal.
Speaker B:I want to understand from your perspective what is normal.
Speaker A:So as I've learned more about myself, about being autistic, about embracing my neurodivergent identity, to me normal doesn't exist.
Speaker A:Normal represents what society feels comfortable with embracing.
Speaker A:So to me I just say normal with air quotes because normal is what accepted.
Speaker A:But now my goal is to challenge what is quote unquote normal so people can learn to embrace differences.
Speaker B:I love that.
Speaker B:And it's why we are called different, not broken for exactly that reason.
Speaker B:But I want to go back a little bit further.
Speaker B:When you are striving to be something that you have since learned is not a thing.
Speaker B:And we'll talk about that part a little bit more.
Speaker B:What did you think you needed to be when you were younger or before you were properly diagnosed that you felt like you couldn't achieve?
Speaker A:The biggest thing that I wanted to be is to just be embraced and loved by individuals.
Speaker A:My age group, family, friends.
Speaker A:Because I spent the majority of my life being bullied because I was different.
Speaker A:It was to the point where I was put in martial art classes to help defend myself.
Speaker A:And I literally started fighting back with individuals.
Speaker A:And I want to tie this to a movie that I recently saw and just fell in love with after first time seeing the Accountant.
Speaker A:The has been Affleck and it Was a scene in there that was so memorable that it brought me to tears.
Speaker A:And it was the scene where his father and his brother were in a car, and Christian, that's the name of Ben Affleck's character, was preparing to take on his bullies.
Speaker A:And one thing that his father told him that resonated with me was, they're afraid of you.
Speaker A:You're different.
Speaker A:Sooner or later, different scares people.
Speaker B:Victim or not, make a decision.
Speaker A:And that was just like a aha moment to me.
Speaker A:And I said that's what I needed to hear.
Speaker A:Because my differences challenge people to question what they learn, what is quote, unquote, normal.
Speaker A:And it challenges them.
Speaker A:So I decided at that point, okay, this is the perfect movie to describe this, because that movie itself, talk about the skills, the differences.
Speaker A:That was the first move I have seen that show autism not as some type of deficit, but just as a difference, a significant difference in the beauty of those differences.
Speaker A:So that when I was kind of reflecting on my life and I received my diagnosis was okay.
Speaker A:I was just doing things differently.
Speaker A:And there are people who accept those differences.
Speaker A:That's why I have quality friends now, because after my diagnosis, I started to eliminate the quantity.
Speaker A:And the quality has come up quite a bit to surround myself with people who support me, my whole me, not just the parts that make them look good.
Speaker A:I recognize my battles helped me become the person I am today.
Speaker A:And I learned to grant myself grace as I move forward.
Speaker A:And like, I was doing things to survive when I was younger, but now I'm intentionally going to put myself in places where I can thrive.
Speaker B:Going back to something else that you said in your world, or the world you were, let's say, forced to exist in as a child was normal.
Speaker B:Not bullied, not persecuted.
Speaker B:Was that the switch you were looking for?
Speaker B:Is whatever I can do to just make all of this trauma stop.
Speaker A:Correct?
Speaker A:That's exactly what it was.
Speaker A:So I started to mimic what other little black boys were doing to be appreciated.
Speaker A:So that means buying certain clothes, dressing a certain way so you wouldn't be bullied, because they would label bully as something else, you know, some type of slur.
Speaker A:So I would try to mimic those things to be accepted, but it was never enough.
Speaker A:And it was to the point where I just.
Speaker A:Like, when I graduated from high school, I was like, I have to get away from this area.
Speaker A:When I graduated from college, I said, I have to get away from this state because there has to be individuals who can just like me for me.
Speaker A:And I found that I just moved over One state when I started graduate school at the University of Alabama at Birmingham.
Speaker A:And I actually found people who just liked me for me.
Speaker A:So they just let me know that there are people who accept me from me and I don't have to be what society accepts as normal.
Speaker A:So at that point, I stopped trying to do those things so people would finally like me.
Speaker A:I just started doing things that made me happy.
Speaker A:And those people who wanted to stay, they stayed around.
Speaker A:And those who wanted to go, I just said, bye, bye.
Speaker B:I love that.
Speaker B:There's an example I always use when we talk about normal, which I agree with you, does not exist.
Speaker B:But I think people who are clinically trained, or in my case, heavily clinically exposed, let's put it that way, learn about normal in a different way.
Speaker B:And I think if we could better apply that to the world in general, it would solve a lot of these problems or at least give people a frame of reference for why this is a problem.
Speaker B:So let me ask it to you this way.
Speaker B:You get labs on a patient, right?
Speaker B:And everything is within range.
Speaker B:What do you call that?
Speaker A:I say it's a reference range.
Speaker A:But every person has their own baseline, what's considered acceptable for them.
Speaker A:So you may have people whose body has compensated for something that's going on for them.
Speaker A:So what's considered their range would be different for someone else's.
Speaker A:And one thing I always use with my oncology patients, we use what's called tumor markers.
Speaker A:And those markers are unique to everyone's situation.
Speaker A:So someone was considered within range, could be four, but for.
Speaker A:And that's what their baseline is.
Speaker A:That's what we call it baseline.
Speaker A:But for somebody else, could be 52.
Speaker A:So it's just based on that individual.
Speaker A:So at that time I started to let people know, don't focus so much on what's within that range.
Speaker A:Focus on you and how you feel.
Speaker A:That way we can look at you holistically and not focuses on what society or labs considered within normal range.
Speaker A:Because it's different for everybody.
Speaker B:And when you know, when you're typing it into a chart and you've looked at the lab studies, you usually write wnl, right?
Speaker A:Yes, that's what usually is labeled.
Speaker A:But there's also an explanation.
Speaker A:I put saying that this patient's trending is this, this and this.
Speaker A:That way it's evident that it may not be within that, within normal limits based on the labs finding, but it's within what this person's baseline is.
Speaker B:And that's, that's actually super helpful and, and further kind of proves what I'm getting at, which is you can have a patient that comes in with what looks like a high number on the scale, and you can have a patient that comes in with what looks like a low number on the scale, but they're both within the reference range and both normal, considered normal, because they're within normal limits.
Speaker B:Normal could be this big.
Speaker B:I mean, it could be a huge range.
Speaker B:And we have a lot of things that are.
Speaker B:That it's a huge range, but as long as they fall on there, or as you said, normal for them, which is sometimes different.
Speaker B:And I have a really good example of that, intervention might not be necessary.
Speaker B:Even though you have people with vastly different values, intervention might not be necessary.
Speaker B:And so when we look at things from that perspective, which is, listen, if you're anywhere on this range from 1 to 10,000, you're still within normal limits.
Speaker B:It gets rid of the rest of the garbage about how you have to perform to this one specific data point.
Speaker B:I'll give you an example of this that is completely anecdotal, but it is one of the challenges that we had with my dad when he was so sick.
Speaker B:So he had pancreatic cancer.
Speaker B:He was very sick.
Speaker B:And we noticed that if we could keep his blood sugar around 200, he could function.
Speaker B:He could think, he could walk, he could operate.
Speaker B:He wasn't fine.
Speaker B:He was still terminally ill, but he had a better day if we could keep his blood sugar around 200.
Speaker B:So we checked it often.
Speaker B:We gave him all the crap that he wanted to eat because he was dying anyway.
Speaker B:And he had better days when he was at 200.
Speaker B:Now, a couple of times he had to be hospitalized.
Speaker B:The way these dietitians freaked out when we said his blood sugar needs to be at 200.
Speaker B:No, no, no.
Speaker B:Over a hundred is bad.
Speaker B:He could get very sick.
Speaker B:If it's over a hundred, he's already very sick.
Speaker B:We're fighting a losing battle here.
Speaker B:He's healthier when it's at 200.
Speaker B:And that very much kind of speaks to what you were saying, which is that our conventional wisdom tells us X, but we know anecdotally if we do Y in this particular human, they do better.
Speaker B:And so we're gonna do Y.
Speaker B:And if we could start addressing this idea of normal, especially in children, and I think we have gotten better at it, but we're not there yet.
Speaker B:If we could start addressing this idea of normal as our reference range, and as long as you are not harming yourself, harming someone else, harming animals, Creating a world that's comfortable for you, eating, being kind, learning, empathy, staying hydrated.
Speaker B:Then we're within the reference range of normal.
Speaker B:We're within normal limits.
Speaker B:That's a way healthier expectation than do whatever you can to not get beat up.
Speaker A:I totally agree with that.
Speaker A:And that's the route I took when I practiced medical oncology.
Speaker A:And we have another connection.
Speaker A:My mother had pancreatic cancer too, so I completely understand that.
Speaker A:And that was my driving force for going to oncology itself because I wanted to make sure people did what was best for them.
Speaker A:At the end of the day, it's all about the quality of life over quantity.
Speaker A:And that's most.
Speaker A:The most important thing.
Speaker A:And I think that's one of the things that allowed me to kind of bond so close with my patients because I wanted them to do whatever made them feel happy at this point.
Speaker A:So you're absolutely right.
Speaker A:We need to focus more on what the patients need to feel happy to ensure they have the quality that they deserve because they are hit with these various diagnoses that can be scary itself.
Speaker A:And if we just stick to those labs itself, we miss out on the whole picture.
Speaker A:The labs are only part of the story.
Speaker A:And that's one thing I always taught my students when I was a Penn educator.
Speaker A:You can't just look at the labs.
Speaker A:You have to look at the whole itself to understand that full story.
Speaker B:That hits on something that I say a lot when I'm talking to people about our programs for autism diagnosis and assessment of neurodivergence is that, and I think we forget this a lot in our field, or maybe it's not said loudly enough.
Speaker B:The testing doesn't make a diagnosis.
Speaker B:The clinician makes a diagnosis.
Speaker B:The testing either supports or doesn't support the clinician.
Speaker B:There's a lot of, especially in autism diagnostics.
Speaker B:There are so many people out there who think that what the test says is conclusive and that there is no clinical judgment involved in assessing autism spectrum disorder.
Speaker B:And it's just not true.
Speaker B:And it's how we have missed so many women, femmes, non binary people, certainly black people, certainly anybody with a marginalized identity, any person of color, because our tests are designed for white male children and don't represent most of the other people that exist on that spectrum.
Speaker B:And so when we undermine clinical judgment to say that the testing is the most important aspect of this process, we are one excluding people who need services and who need support.
Speaker B:But we are also devaluing something that people went to school for a long time to learn how to do it drives me absolutely bonkers every time somebody overvalues testing, not to say the testing doesn't have a place it does.
Speaker B:Data is always good.
Speaker B:We like data.
Speaker B:But when data is built on bad or incomplete sources, we leave people out of the process.
Speaker B:And that's where the clinical judgment comes in.
Speaker B:Jumping from that, we deal with a lot of neurodivergent people every day.
Speaker B:We have programs specifically for autism assessment.
Speaker B:Those will feed into the programs that we're building with you.
Speaker B:You have a unique perspective on this because you are not only neurodivergent, but you also are neurodivergent, and you carry a marginalized identity beyond neurodivergence.
Speaker B:And what I want to understand from you is with as many patients as you have seen, with your own personal experience, I can understand much of the white neurodivergent experience.
Speaker B:I have no personal frame of reference for what that is like walking around for.
Speaker B:From your experience, let's put it that way.
Speaker B:How do those things from your perspective, differ in access to care, in likelihood of it being spotted, or being assessed early?
Speaker B:And how do you see it in your patients?
Speaker B:And how did you experience it yourself?
Speaker A:I will use a clinical reference.
Speaker A:The biggest thing to me is representation matters.
Speaker A:And the reason why it matters is the following.
Speaker A:I had one patient I was seeing for the first time, and she was assigned to me.
Speaker A:And I kept receiving warnings about her being difficult, very hard to work with, and so on and so forth.
Speaker A:And I said when I met with her, it was a black woman.
Speaker A:So first thing they went off with to me was, there's some internalized racism, all the things going on with her.
Speaker A:So when I met with her, of course, you know, at first it was a little tension because of the mistreatment she experienced before.
Speaker A:But one thing I did, I sat down and talked with her and her daughter, because they warned me about her daughter, too.
Speaker A:And we sat down and we talked, and we made so many connections, and it was just such a wonderful experience.
Speaker A:It was the fact that she wasn't being heard because she was dismissed based on biases, and people weren't willing to take that time out to listen to her story.
Speaker A:So to me, representation matters because you can relate and you can understand and you're willing to learn.
Speaker A:And it also helps you challenge some of those thoughts.
Speaker A:You may have internalized thoughts.
Speaker A:And that's one thing I always done as a clinician.
Speaker A:I'm always evolving with my thoughts because I had to make sure that at the end of the Day, I hear what my patients are saying, and I provide the service that they deserve.
Speaker A:So after I made that connection with her, that patient, or her daughter, we just became so close.
Speaker A:And that's how I was with all my patients, no matter who they were, because they have been to various clinics and people just pushing them off and dismissing them.
Speaker A:And they finally came to a provider who actually listens and made sure they received what they wanted.
Speaker A:And they said, carl, can I do this?
Speaker A:Do this?
Speaker A:I said, you do whatever makes you happy.
Speaker A:My goal is to make sure that your quality is at the highest it can be.
Speaker A:And even though this patient passed away, her daughter and I still keep in contact.
Speaker A:Her daughter recently texted me on my birthday.
Speaker A: I met this patient in: Speaker A:And I actually had a daughter speak to some of my students about making sure.
Speaker A:Sure that you listen to your patients, because they're humans too, and they deserve to be heard.
Speaker A:So I think the representation component is important.
Speaker A:And you also have to be vulnerable and be willing to listen and learn as you move forward, because you have to be willing to challenge those old thoughts that you are taught.
Speaker A:That's what you know.
Speaker A:Because we're taught these certain ways and, you know, in our medical programs, and you have to challenge that.
Speaker A:Like, real life isn't like this.
Speaker A:People have lived experiences that are valid and they need to be heard and listened to, and you need to adjust your practices towards that.
Speaker A:So I think coming from my multiple marginalized identities based on my experience, because I was ignored, I was caused harm by providers.
Speaker A:And I said, I don't want that for my patients either.
Speaker A:So I just feel that it helps me listen and it helps humanize them and also humanize myself too, because they let me know that, you know, you're human too.
Speaker A:You need to make sure you take care of yourself, because sometimes when you're so used to being hurt and harmed, you try to save everybody else and you cause harm to yourself.
Speaker A:So my patients remind me of that too, to take care of myself.
Speaker B:So that's super helpful.
Speaker B:I want to touch on one thing that you said.
Speaker B:You said, and.
Speaker B:And this is so common, and it's infuriating that it's common, but you said that this patient, she was perceived as difficult, and you were warned multiple times that she was difficult.
Speaker B:What things do you think that she was doing that were misinterpreted by the care teams who are not listening to her?
Speaker A:She advocated for herself and she asked questions.
Speaker A:She didn't sit by and just Let things happen.
Speaker A:And usually when anyone asks clarifying questions, some providers become offended when it's just a person who wants to just be clear about the decision they're making about their lives.
Speaker A:So it was the fact that, you know, she and her daughter were advocates, and they just wanted clarity about certain things, and once they received that clarity, they were good to go.
Speaker A:That's all they wanted.
Speaker B:I don't know if you can give me a direct answer to this, but do you think she would have received the same resistance if she were white?
Speaker A:Based on where I was working, which was in.
Speaker A:In the south, and, you know, in the Deep South, I think she would.
Speaker A:She would have been perceived differently because she was someone who was not Southern.
Speaker A:She was from the Midwest.
Speaker A:So it could have been a difference, you know, in response to that.
Speaker A:And a lot of individuals, based on my experience and the area I grew up around, they just are complacent with decisions being made by providers.
Speaker A:They don't ask questions.
Speaker A:So she challenged what they thought.
Speaker A:And I think that what made them label her as difficult because she didn't make them feel comfortable.
Speaker A:She just asked them the questions they didn't want to hear.
Speaker B:Do you think the other people who are not perceived that way, who carry the same type of identities that she does, are they less involved in their care, or have they been conditioned not to ask?
Speaker A:I think some people have been conditioned not to act.
Speaker A:I just use my dad as an example.
Speaker A:When he had a health emergency, I made sure I was there every second of the way because I knew that individuals from his generation, the baby boober generation, they usually don't ask that many questions.
Speaker A:But I was there to ensure that those questions were asked.
Speaker A:And he made sure it was known.
Speaker A:He said, my son is a pa.
Speaker A:And when they heard the PA component, that switched them completely to the point where they was more attentive to everything because they knew I was watching everything that came through.
Speaker A:So I think that was one of the key components, you having somebody who knows the language or who isn't afraid of asking those questions that need to be asked to ensure that their loved ones are not being ignored.
Speaker A:Especially when certain populations have been historically excluded and ignored for so long.
Speaker B:In what ways?
Speaker B:Either from your personal experience or from your clinical experience, or both.
Speaker B:Have you seen black patients excluded from appropriate assessment of what could be possible neurodivergence?
Speaker A:I would give a personal example.
Speaker A:I remember one time I was seeing a clinician, and I had concerns, and the focus was more on how my face looked and how I Said things more so than what I was asking.
Speaker A:That clinician literally yelled at me, patted me on my shoulder, and walked out the room.
Speaker B:Because of how your face looked?
Speaker A:Yeah, how my face looked.
Speaker A:And I said, I feel forgotten.
Speaker A:And he just took offense to that and started yelling, patted me on my shoulder, and walked out the room.
Speaker A:He didn't even finish his complete assessment.
Speaker B:Can you think of a situation where you would ever yell at a patient?
Speaker A:No, not me.
Speaker B:That's what I'm saying.
Speaker B:That's such an outsized reaction.
Speaker B:I can't even.
Speaker B:I mean, I've seen it happen, but I.
Speaker B:I try to think about the way.
Speaker B:And maybe it's different for our generation.
Speaker B:We bring ourselves to work, I think, a lot more than previous generations did.
Speaker B:And I think we.
Speaker B:We insert ourselves in things enough to try to figure out how what we're doing would feel to us, and so we don't necessarily do that to other people.
Speaker B:I mean, you've met some of the team that we work with.
Speaker B:Can you imagine any single person on our team talking to a patient that way?
Speaker A:Oh, no, not at all.
Speaker A:And, you know, one of the things I brought up when I was, you know, deciding to work with the team is to ensure that it was a safe space for everyone.
Speaker A:Not just the patients, but for everyone.
Speaker A:Because if they treat the patients like that.
Speaker A:Nope.
Speaker A:They can probably treat each other like that, too, because, you know, it's traumatic when you experience that from a provider, somebody who's supposed to be listening and caring.
Speaker A:But you only just want to do things that make you comfortable, and you don't like when people challenge you.
Speaker A:That's a huge red flag.
Speaker A:And being challenged is not a bad thing.
Speaker A:It just helps.
Speaker A:Well, to me, it helps you evolve.
Speaker B:Were you assessed as a child in any way?
Speaker A:No.
Speaker A:Nope, I wasn't.
Speaker A:The area that I grew up in was small, rural Mississippi.
Speaker A:And it wasn't a lot of resources, so it was more of just getting through the motions and getting done.
Speaker B:The area that you grew up in was it assumed that kids who deviated from the norm were just problems?
Speaker B:So was that your experience where they just kind of labeled you, to reuse the term difficult?
Speaker B:And it wasn't a matter of giving you interventions to try to manage that.
Speaker B:It was a matter of, you know, comply or.
Speaker B:Or be ostracized?
Speaker A:I think one of the things about me is I was different.
Speaker A:But my parents, they both were very supportive, and it made sure that I excel at school.
Speaker A:So I always did well at school, but my school experience was just harmful to me because everyone else didn't understand me.
Speaker A:So the home environment was supportive, but, you know, the lack of understanding about neurodivergence 20, 30 years ago compared to now, you know, just, you know, they made sure to have those resources so I can.
Speaker A:Can do well in school and continue to progress on.
Speaker A:And they always made sure I did things that made me happy.
Speaker A:So, like, I remember when I said, I want to go to this particular college instead of another college, that we just want you to go to a place that, where you can be happy and thrive.
Speaker A:And when I made the decision to go to graduate school, my mom, she was always very supportive with everything I do.
Speaker A: She passed in: Speaker A:She was like, you need to do what makes you happy.
Speaker A:Even I made my career change, do what makes you happy.
Speaker A:And that was the focus that they always had.
Speaker A:So they may have had certain plans of things that I wanted to do, but they was always pushing me toward that made me happy.
Speaker A:So those bad times I had at school, I'm thankful that I had those parents that were supportive.
Speaker A:They may not have understood what was going on, but they were always very supportive.
Speaker A:So I'm thankful for that.
Speaker A:But being that different kid, I was isolated.
Speaker A:That was the biggest thing.
Speaker A:And I was bullied.
Speaker A:And I had my small group of people that I associated with, but I found out they weren't right either.
Speaker A:I tell people my best time in high school was when I graduated, when I can move forward.
Speaker B:What do you think the biggest difference between a black or bipoc neurodivergent experience, diagnosed or otherwise, is and what white people tend to experience?
Speaker A:I think it's the media representation.
Speaker A:Individuals see people who look like them that are highlighted in a certain way.
Speaker A:You see more white individuals compared to anyone else.
Speaker A:All the examples I find on tv, like the good doctor.
Speaker A:You can even consider Sheldon from the Big Bang Theory.
Speaker A:I mentioned the accountant.
Speaker A:All the things they have in common, those are white men, those are white men.
Speaker A:You don't see anybody else.
Speaker A:So if you don't see anybody else who looks like you with something similar, you don't think it exists.
Speaker A:So you keep trying to find other things that can explain the reason why you are so different and there's nothing there.
Speaker A:Then if various tests and assessments are centered around white men, white boys, individuals who are not white men or white boys could be misdiagnosed with something else.
Speaker A:You know, they could be misdiagnosed with being oppositional, defiant, where they could just be someone who needs assistance, people to take time and listen to them.
Speaker A:It always defaults to the negative.
Speaker A:And when you're constantly being seen in a negative life, you tend to want to hide those various traits.
Speaker A:So you're going to be labeled.
Speaker A:Because sometimes when you have that diagnosis, that negative diagnosis, it haunts you for the rest of your life, and it can cause various barriers to occur.
Speaker A:So I think the biggest thing is seeing more people in a positive light with similar traits compared to just seeing this one group that's always highlighted.
Speaker A:And I think that's the biggest difference.
Speaker A:So once more people see, you know, more positivity with it, they're more likely to embrace and more likely to look at those various diagnoses.
Speaker A:And that help enforces that.
Speaker A:You know, just because you're different is not a deficit.
Speaker A:It's just a different way of viewing the world.
Speaker A:I always tell people it's like going to a destination.
Speaker A:There's multiple ways to get to the same destination.
Speaker A:It doesn't mean that one way is better than the other.
Speaker A:I think that's the biggest thing.
Speaker A:We just have to see more individuals who represent the society as a whole.
Speaker A:And one important example I will give after my presentation at Autism in Black, a black father came up to me and he said that his son is autistic.
Speaker A:And seeing me speak let him know that his son was going to be okay.
Speaker A:And that's powerful, that representation matters.
Speaker B:How many of the children that we have historically labeled as oppositional defiance disorder do you think are misdiagnosed autistic?
Speaker A:I believe a large majority of them are.
Speaker A:It boils down to bias.
Speaker A:It boils down to racism.
Speaker A:It boils down to a lot of internalized thoughts they may have about certain individuals.
Speaker A:I really do think that.
Speaker A:I think if those children were provided the adequate diagnosis, they will receive the services they deserved in order to thrive.
Speaker A:It makes all the difference because that could just be their outlet of just letting people know that they need some type of support.
Speaker A:And that goes back to what we consider, quote, unquote, normal.
Speaker A:They're responding in a way that individuals not used to.
Speaker A:So it's automatically labeled as something that's abnormal, that binary thinking, when it could just be a different way of expressing themselves.
Speaker B:If we take a look at the way that we currently assess children and adolescents and even adults who identify as black or as bipoc children too, what is missing from our current setup as far as the testing and assessment we have available?
Speaker B:And I mean as a medical community.
Speaker A:Not us specifically, I Think more needs to be look into the intersectionality component, because those various identities, people have shaped their experience.
Speaker A:And that would help identify or help bring to notice, you know, certain components that may have inspired a person to do things the way they do things.
Speaker A:So I think it's just individuals probably need to just take a deeper dive and looking at how all these things play into creating this person and that could be responsible for why they do things the way they do.
Speaker A:It just requires more work.
Speaker A:I think that's the biggest thing.
Speaker B:So this is a big question, and I think it may be impossible to answer, but I would.
Speaker B:I'd like to see what you can kind of get out of it.
Speaker B:How does racism and lack of black representation in neurodivergent assessment and conversation, how is it affecting our children today, and what do we need to do to improve that?
Speaker A:I think that it leads to individuals being in the mode of survival at all times.
Speaker A:What ultimately causes them to live a life filled of harm.
Speaker A:And I'm speaking from my experience because it got to the point multiple times in my life prior to my diagnosis, you're constantly misunderstood.
Speaker A:You feel like you're worthless and you do not want to exist anymore.
Speaker A:So I feel that if more time was spent learning everyone's lived experience, no matter who they are, and then just eliminate those various biases, you know, challenge yourself, even external, internal, implicit, explicit, to ensure that individuals are humanized and let them know that their experiences are valid and the validation experience is what helped them want my experience to be around a bit more.
Speaker A:Because I was at that point prior to my autistic diagnosis.
Speaker A:I was at the point where I said, I'm a black man and my life doesn't matter.
Speaker A:Because I was just so tired of being misunderstood, specifically by people who share the black identity.
Speaker A:They let me know that they accepted the black part of me, but they rejected the neurodivergent component of me.
Speaker A:So we just need individuals to accept people as a whole and not just the parts that make them look good or the parts that make them comfortable.
Speaker A:That makes a world of difference.
Speaker A:And I started to see more in that when I learned more about autism.
Speaker A:I learned more about advocacy and surrounding myself with people who shared the identity with me.
Speaker A:Those individuals who taught me what a safe space was, those individuals who encouraged me to use my voice, and I used that to take it forward.
Speaker A:I have a mentee who almost gave up on a PA profession based on the discrimination he faced because he's neurodivergent black man who was told that his thoughts are all over the place.
Speaker A:That's why they couldn't accept him into PA school.
Speaker A:But with my help and other black men who are neuro affirming, we were able to help help him navigate to find a PA program that accepts him for him, and that makes all the difference.
Speaker A:So he went from not wanting to be a PA to now wanting to be a PA that's neurodivergent and showing the strengths of neurodiver, you know, neurodiversity itself.
Speaker A:And I think that's the importance.
Speaker A:We need to see people as a whole, not just the part that makes them look good or the parts that makes them comfortable.
Speaker A:And the only way we can address that is kind of look at those isms and obias that we may have in ourselves, internalize and address those so people, we can see people for who they are, for all their identities, and hopefully they'll all be accepted.
Speaker A:And as I mentioned, I had to do a lot of internal work myself, especially when it comes to neurodiversity.
Speaker A:I learned my ADHD diagnosis in PA school.
Speaker A:And when I learned it, I initially had that thought that I was broken because that's what I was taught.
Speaker A:So when I graduated from PA school, I didn't use any accommodations for that because I didn't want to perceive as somebody who was broken.
Speaker A:But when I received my autism diagnosis, I revisited that and I said, disability is not a bad word, is not.
Speaker A:And those resources are there for me to use and I'm going to use them.
Speaker A:And I have been.
Speaker A:And that's what I try to tell other people as well.
Speaker A:You know, society sometimes set us up to not use things that are designed for us to thrive so things could be more accessible to us.
Speaker A:And that's what I'm embracing now.
Speaker A:And the important thing that happened at the conference, the AAPA conference I mentioned I was at Denver, my colleagues and I represented on institutional equity and PA leadership.
Speaker A:And for the disclosures, I put that I'm a disabled person and my views represent myself.
Speaker A:But my co presenter changed the language to person with disability.
Speaker A:And I had a conversation with him and said that I identify as a disabled person.
Speaker A:And I'm glad you brought.
Speaker A:You know, we went through these slides because he changed it back and he realized, yes, he said, yeah, you're right, because we are taught this way.
Speaker A:I said, and that's the thing that we're going to bring up during the presentation.
Speaker A:He did that we need to listen to people and how they choose to identify instead of identifying them because what makes us feel comfortable.
Speaker A:So I'm preaching to him because he.
Speaker A:It was a learning moment for him at that moment, because he just did what he thought he was supposed to do instead of asking a person what works best for him.
Speaker A:So the work that we're doing now is encouraging people to listen to what people want, validate their experiences, and do what works best for them.
Speaker A:So once we start doing all of that, I think we can allow people to start living more authentically.
Speaker A:They're allowed to identify places that are safe for them, and they can thrive because we get tired of being in survival mode all the time.
Speaker A:I was in survival mode for 37 years of my life, and after that, I said, I can't do that anymore.
Speaker A:I want to be in places that allow me to be me.
Speaker B:There's one thing I want you to comment on that is something that we hear from our patients a lot, and it's something that I respond to a lot.
Speaker B:But one of the things that we hear most from our patients who come in for autism assessment is that if they get a diagnosis, they will have permission to be nicer to themselves.
Speaker B:How do you respond to that?
Speaker A:One of the things I always say, you know, give yourself grace for their experiences that you had throughout your life.
Speaker A:It allows you to recognize that, you know, I just did things that I thought was best at that time.
Speaker A:And you can't fault yourself for doing what you thought was best because you didn't know.
Speaker A:But now that you know these things, you can make adjustments and you can do things to ensure that you're okay.
Speaker A:So it does grant you the ability to be nicer to yourself, to the decisions you made in the past, because you did what you thought was best based on the information that you had at the time.
Speaker A:But now that you have more information, you can utilize these resources, these various communities that will allow you to recognize, oh, this is available.
Speaker A:Oh, that is available.
Speaker A:Oh, just because they can't see doesn't mean it's not there.
Speaker A:And I can utilize resources to ensure that I get what I need.
Speaker B:Do people need to pursue diagnosis to be kinder to themselves?
Speaker A:I feel that people, if they feel inclined to, if they feel that, you know, that's something they need to complete their story, I say go for it.
Speaker A:I know that's what worked for me.
Speaker A:When my.
Speaker A:My friend who experienced a similar situation, I did at the workplace, when she told me about it, I said, maybe this will help my life make sense.
Speaker A:So if you feel like it helps your life make sense, I say Go for it.
Speaker A:And it changed my life completely.
Speaker A: not the same person I was in: Speaker A:I'm someone who is vocal, more vocal about situations.
Speaker A:I'm someone who will call out the harm that's being caused to me and I'm someone who will not be in places that will cause harm.
Speaker A:I sought out the diagnosis because I wanted to see what is it like something is missing.
Speaker A:And I wanted to be whole.
Speaker A:And that found out that part allowed me to be whole.
Speaker B:Carl, thank you so much for your transparency, for your vulnerability, for spending this time with us.
Speaker B:I am so grateful to have you here.
Speaker B:To everybody who's listening.
Speaker B:Carl is.
Speaker B:You're on LinkedIn, right?
Speaker B:Carl.
Speaker A:I currently use Instagram ca Frazelle Pac.
Speaker A:If you type in Carl A.
Speaker A:Frazelle, it usually comes up.
Speaker A:And on my Instagram, I'm full transparent about my experiences because I think transparency is important and it encourages other individuals to just live their truth.
Speaker A:And I became more transparent after my experience with my mentee when he started to embrace himself more as a neurodivergent person.
Speaker A:They'll let me know that he saw me doing what I'm doing and encouraged him not to do the same for other people.
Speaker A:Thank you for having me.
Speaker A:I always enjoy sharing my story because I know that someone can relate.
Speaker A:And as long as they can relate, they can take the action to live their lives authentically.
Speaker B:Amazing.
Speaker B:So you can find Karl on Instagram.
Speaker B:He also works with us B.
Speaker B:So he has a couple of different states licensure and we are going to expand that very quickly.
Speaker B:Keep an eye out for our program that specifically geared toward neuroaffirming care for black individuals.
Speaker B:And Carl, again, I can't thank you enough.
Speaker B:Thank you so much for being here.
Speaker B:Have a great day, guys.
Speaker B:Love you.
Speaker B:Mean it.
