Latest / Holding It Together (Kinda) / Kala Allen Omeiza: I Got Bullied In An Autism Lab

Transcript

Kala Allen Omeiza: I Got Bullied In An Autism Lab · Holding It Together (Kinda)

1:15
Michael: Welcome back to Holding It Together, kinda.
1:18
Michael: I'm Michael Makniak, your host.
1:21
Michael: We have all had moments in life where things just feel like they're slipping through our fingers, like a bad day, lost job, or overwhelmed, whatever today may be, you know.
1:33
Michael: But sometimes for many people it feels like things are slipping away over a long slow motion crash.
1:42
Michael: And sometimes this goes on and on and can't be identified, and systems can't support what you're feeling, even if you do have the language to uh tell people what you're feeling, and very often folks don't.
2:00
Michael: Um that's why I'm really excited for you all to meet uh my guest that my guest today, Kayla Alan Ometsa.
2:11
Michael: This woman is so accomplished.
2:14
Michael: I and I don't usually do this, but I have to here because it's just it's her her background is just amazing.
2:21
Michael: Uh she's a young person who is just really taking on the world, uh, and she's just effervescent, and I'm really happy that you guys get to meet her.
2:30
Michael: Alright, so she's an Oxford-trained researcher, she's an author, she's found uh founded a nonprofit called I'm Heard Incorporated, which we're gonna talk about during this episode.
2:43
Michael: She was diagnosed with autism at the age of 24 when she then realized that the clinical sort of one-size-fits-all model of mental health wasn't just incomplete, it was excluding people who needed it most, and that's you know, informed the work that she's done professionally and with her nonprofit.
3:05
Michael: Now, she's gone and done research at Harvard, she's gone to Duke, she's launched suicide prevention initiatives in Nigeria.
3:15
Michael: Um she's written all she's written three or four books that I can that I know of.
3:22
Michael: Um, and by the way, she's also an Albright scholar.
3:25
Michael: So it's unbelievable.
3:27
Michael: It's almost like I don't know how she did all this stuff in the short time that she's been on this planet.
3:33
Michael: Um really happy to bring on uh this woman, Kayla, as our guest today.
3:44
Michael: Okay, everybody, here we are and welcome.
3:47
Michael: I I I just gave you guys a bunch of interesting and comprehensive background on my guest, Kayla.
3:56
Michael: Uh Kayla Alan Omai Omeza is here.
3:59
Michael: I want I want to make it, I always want to make that name sound like more I want to say like African Omesa or something like that.
4:07
Michael: You know what I mean?
4:08
Michael: Like uh, but anyway, Kayla Allen Omeza is here.
4:12
Michael: She is a powerhouse guy, she's a dynamo, and we're very fortunate to have her here.
4:18
Michael: As I said, Kayla, I read a bunch of your amazing accomplishments in in doing the intro to today's episode.
4:27
Michael: But I asked my guests this because I hate when people just sit there and read this laundry list because it just sounds so boring.
4:34
Michael: What has got you fired up?
4:35
Michael: What are you working on now?
4:37
Michael: You got any books going?
4:38
Michael: You got in, I mean, you got so many irons in the fire that I'm I'm almost afraid to ask.
4:42
Michael: But what's got you fired up and passionate?
4:45
Michael: And and what are the things you're you're working on now that you really want to share with the world?
4:49
SPEAKER_02: It's true.
4:50
SPEAKER_02: I do have a few irons in the fire, actually.
4:52
SPEAKER_02: I have, I think I have two things I'm working on right now.
4:56
SPEAKER_02: One is I, well, about a year ago, I finished my, well, I guess it's my third novel, my fourth book.
5:03
SPEAKER_02: It's called Soul Food and AI.
5:05
SPEAKER_02: It's about overall has, of course, it has concepts of AI ethics in it, but it's about like just a young woman who was kind of working in an AI startup and decided to pivot to like manage her company's data annotator.
5:20
SPEAKER_02: Saw a really big crisis there, workers being underpaid, exploited.
5:23
SPEAKER_02: But there's a lot of instances with grief, instances with caregiving with her mother who has like a severe mental illness.
5:29
SPEAKER_02: Her brother died by suicide, and there ended up being like a murder mystery.
5:33
SPEAKER_02: I'll all completely really it's uh it was a fun book to write about it from a little bit of my my personal experience, and then also just yeah, just my imagination and just um wanting to wanting to just to go into that space.
5:47
Michael: Sounds like a lot of things going on at once that only somebody with your mind can probably pull into make it uh understandable for the rest of us, right?
5:56
Michael: Sure, yes.
5:58
Michael: Yeah, but and you want and and and again, you have these really interesting names for your books.
6:03
Michael: Tell people about your books and what which what you have out there.
6:06
Michael: I we have Afrotistic, yes, right?
6:09
SPEAKER_02: Yes.
6:10
SPEAKER_02: So I published Afro Tistic, that was my very first novel I I wrote.
6:15
SPEAKER_02: It's about, I mean, it's about a black girl with an Afro who's a who's autistic, honestly, just to be to be frank.
6:20
SPEAKER_02: Um and I wrote it because when I wasn't diagnosed as autistic until I was 24.
6:27
SPEAKER_02: And I was hospitalized multiple times in my life, just really had a lot of different different challenges throughout throughout multiple plans of my life.
6:35
SPEAKER_02: And I was just really uh really confused.
6:38
SPEAKER_02: My parents were also really confused, just why it never really crossed our minds, why it never crossed like the doctor's minds before.
6:46
SPEAKER_02: I was also working in like really high-level spaces in I was working in this world renowned autism research center.
6:52
SPEAKER_02: I was working in like just a lot of world renowned centers studying neurodiversity in general.
6:57
SPEAKER_02: And it just never really occurred to me like, oh, this could be me as well.
7:01
SPEAKER_02: It never really occurred to a lot of um doctors I was working with.
7:04
SPEAKER_02: And uh frankly, I just assumed it was just because we never really saw that mint that much literature and media about autistic people who looked like me, basically.
7:13
SPEAKER_02: So I just I liked I was really into reading books at the time.
7:16
SPEAKER_02: It's like, oh, I want I'm gonna write this book too.
7:18
SPEAKER_02: I'm gonna let me just write this book and have it out there.
7:20
Michael: And uh well, let's start, let's start there because I think it's fascinating on so many on so many levels.
7:27
Michael: I am really interested in that journey.
7:31
Michael: And one of the things and and and I do want to get into all the amazing things you've done in academia, uh and one of the most amazing things that you've done in academia is worked on a high level studying autism, only to find out that lo and behold, holy crap, I have autism.
7:50
Michael: Right, and and interestingly enough, I had a guy over the other day for a cookout.
7:55
Michael: I was hanging out with him for hours.
7:57
Michael: I just met the guy that day, and he was there with his family and whatnot, and then I and then all of a sudden he just comes out with like, yeah, I got the tism, or I I got the tism, or I'm autistic, or you know, I said, What you know, and my daughter now is according to Frank, she doesn't like autistic, so everybody's artistic.
8:16
Michael: So anyway, and I I I'm really happy that this is coming out in such a way that people are talking about it, and so and and it's so much I mean, here we are having a beer with this guy, and just like, yeah, I I got the TISM.
8:31
Michael: It's like okay, have another beer.
8:35
Michael: But meanwhile, I mean here you are functioning in in this high-level academia, your your credentials are are out of this world, and lo and behold, you wind up at 24 years old studying autism and re realizing, wait a minute, I have autism.
8:52
Michael: Or did you did you like you know, I I a lot of my friends will say, Oh, I I hurt myself.
8:57
Michael: I'm going into WebMD and I'm gonna look it up, and all of a sudden they diagnose themselves with every kind of cancer and everything wrong with them.
9:05
Michael: While you were working in this field, did you start saying, Hey, I this sounds like me?
9:10
SPEAKER_02: No, no, but there were there were signs.
9:13
SPEAKER_02: No, there were signs that I primarily I actually don't really disclose like the lab I worked at was really that I was working in the high-level autism center because they were extremely mean to me um because of my autistic traits.
9:28
SPEAKER_02: Um yes, it was very ironic, basically.
9:32
SPEAKER_02: I if I was just kind of fidgeting in my seat, just stimming, just even even things that were more things that made me a good employee, just like staying late, getting there early, and just they would kind of like tease me about it, make fun of me about it.
9:44
SPEAKER_02: It was to the point where I just had to resign, honestly.
9:46
SPEAKER_02: It was it was a really toxic, it was a very toxic environment, honestly.
9:50
SPEAKER_01: Awful.
9:51
SPEAKER_02: Yes, just for the exact traits that we were researching, the exact same people we were researching.
9:55
SPEAKER_02: I was being, I was really being, I want to say demonized, but I would say I was just really being being bullied.
10:02
SPEAKER_02: I was being bullied in my workplace for for having autistic traits um in an autism research lab.
10:07
SPEAKER_02: When I moved to when I started working in my my amazing research lab at uh Duke at the time, that's when I started having.
10:15
SPEAKER_02: So I realized I was autistic because it's kind of you'll probably chuckle when you understand the story.
10:21
SPEAKER_02: I had to completely, what's the word?
10:25
SPEAKER_02: To to to like the the watered down version is that I had a really bad falling out with a friend group and I had a really bad mental health crisis when I was 24 years old.
10:36
SPEAKER_02: I was in and out of the hospital because of it.
10:39
SPEAKER_02: I and then I I out of spite, I just wanted to, I needed to, I needed to leave that environment at the time.
10:47
SPEAKER_02: So I applied to the Fulbright program and I applied to University of Oxford.
10:51
SPEAKER_02: And I think that okay, maybe one of them will stick.
10:54
SPEAKER_02: I mean, I also applied to places nearby and stuff.
10:55
SPEAKER_02: I applied to just like obviously local grocery store and everything else is like a normal person as well.
11:00
SPEAKER_02: And and then, but I ended up getting into both and the Fulbright Wait a second.
11:04
Michael: So you you get pissed off at your friends, you just say, you know what?
11:07
Michael: Screw you guys, I'm gonna become a Fulbright scholar.
11:10
SPEAKER_01: Yes, yes, yes, that's what I did.
11:12
SPEAKER_01: Yeah, everybody, I did that.
11:13
Michael: Yes, I did that three times actually.
11:15
SPEAKER_01: Yes, it's as you do, as you do, as as people do, right?
11:18
Michael: Yeah.
11:19
Michael: So you become a Fulbright scholar from this.
11:22
SPEAKER_02: Yes.
11:22
SPEAKER_02: So so as I I needed to I needed to get away, basically, and I wanted to take the next step in my research career.
11:29
SPEAKER_02: I got into the program in Nigeria, actually.
11:31
SPEAKER_02: I have a Nigerian last name now, but at the time, I mean I mean my name is also Kayla Allen.
11:36
SPEAKER_02: I just knew as much about Nigeria as probably you did.
11:39
SPEAKER_02: I it was just as much of as a foreign country, a completely different environment as as most Americans would experience it as.
11:46
SPEAKER_02: So um, I had to get an approval from my doctor to to say that I was like kind of, of course, physically healthy, but also mentally healthy to go.
11:54
SPEAKER_02: This was just a few weeks after I was hospitalized.
11:57
SPEAKER_02: And my doctor's like, huh, you should probably, I need you to go to this therapy, this therapy program for one one week, one day a week, and then also go, my aunt lived nearby, also go to um a 16 to 24-year-old group therapy session with your aunt, like uh for for like young adults and their caregivers as well.
12:18
SPEAKER_02: So I ended up going to therapy twice a week.
12:20
SPEAKER_02: And that was when they kind of worked with me to understand the underlying cause of like just like kind of this more pattern recognition of why I was kind of going in and out of these cycles of just just like, oh, everybody likes me, then everybody hates me, everybody likes me, then everybody hates me, kind of thing.
12:35
Michael: And this is beyond the normal teenage girl angst of everybody likes me, everybody hates me.
12:42
SPEAKER_02: Yes, it was I when I say it was watered down version of falling out, it was a watered down version.
12:47
SPEAKER_02: Yes, um, I couldn't I'm happy to go into a little bit farther and in detail later.
12:52
SPEAKER_02: But I yes, I so I was that and just the overall, like just my um just my social skills, my social communication skills, how people perceived me, how I perceived others.
13:04
SPEAKER_02: And then also my therapist decided to recommend me when I when she told when she noticed and I confirmed that I don't wear jeans, I don't wear anything tight on my body um and I don't wear cloth tight clothing.
13:16
SPEAKER_02: And she's like, Oh, that's that's a sensory issue.
13:19
SPEAKER_02: Maybe you should, yeah, maybe we should go reevaluate you for an autism assessment.
13:22
SPEAKER_02: So, yes, I be I I was diagnosed as autistic after I after I had to go to therapy because I got into the fullback program.
13:30
SPEAKER_02: Yes.
13:31
Michael: You got into the full breadth program.
13:33
Michael: That's so amazing.
13:34
Michael: And you were working, and and this is before you worked at Duke?
13:38
SPEAKER_02: Uh, this is while I was working at Duke, yes.
13:41
Michael: And you alluded to earlier that at some point earlier in your teens and in your early twenties, you were at home and you were struggling with some form of what you I guess later learned was autism, but it seemed to you and your family like this was a a mental health issue, mental illness of some kind.
14:02
Michael: And you guys are just struggling to try to figure this out and live through it.
14:06
Michael: Tell us about what that looked like.
14:07
Michael: I mean, to the extent you want to talk about it.
14:09
SPEAKER_02: Sure.
14:10
SPEAKER_02: So the extent yes, that's that's that's fair.
14:12
SPEAKER_02: To the extent I want to talk about it.
14:13
SPEAKER_02: It was I had a difficult experience in high school, mainly because I was overstimulated.
14:21
SPEAKER_02: My high school really prided itself at the time of not having any walls.
14:24
SPEAKER_02: So it was just it was way, it's really hard to explain, but it didn't have they had wall, uh one wall separating different classes.
14:29
SPEAKER_02: But if you like left your class to go to the bathroom, you would just pass about about seven classes before you get there.
14:34
Michael: I've seen I've seen classrooms, schools that are set up like that, and they're just they're just a holy mess.
14:40
SPEAKER_02: Sure.
14:40
SPEAKER_02: I mean, it's a good high school.
14:41
SPEAKER_02: They've a lot of people liked it, but it was overstimulating for me.
14:45
SPEAKER_02: I used to, I also didn't really get along with a lot of people in my class at the time as well, just for just for more of the perception of like, oh, we don't really know what's wrong with her, like her isn't me.
14:56
SPEAKER_02: Basically, let's just like just not sit with not sit with her.
14:59
SPEAKER_02: We're not we're gonna tell her the seat's taken, basically.
15:01
SPEAKER_02: And it was to the point where I was just really overstimulated.
15:04
SPEAKER_02: I would just eat lunch in the bathroom, just just constantly not want to be involved in a lot of in a lot of day-to-day high school stuff, except I was able to mask because I was extremely when I focus on something, I focus on it.
15:19
SPEAKER_02: I was an extremely intense track star at the time.
15:23
SPEAKER_02: So I was so I could go to track practice, do well, go do well at the meets.
15:27
SPEAKER_02: And people in on paper thought I was doing well.
15:31
SPEAKER_02: My my parents, of course, were concerned that just how just how sad I was when I would get home, I would just kind of start crying, just start complaining about what happened during the day.
15:40
SPEAKER_02: People don't want to speak with me, people don't want to talk to me, um, and stuff.
15:44
SPEAKER_02: And they thought something was wrong.
15:45
SPEAKER_02: They put me in contact with a sports therapist, a sports psychologist at the time, thinking it might have something to do with track, but it's just extremely reasonable thought.
15:53
SPEAKER_02: And I and I had I was going, they didn't know at the time.
15:58
SPEAKER_02: I talked about it more in my book, but I was definitely had more of like a passive suicidal ideation.
16:04
SPEAKER_02: And when I talked to my therapist about it, I just it was more about like, oh, well, everybody thinks like that.
16:09
SPEAKER_02: It's okay.
16:09
SPEAKER_02: It was like, oh, well, I don't know, okay.
16:11
SPEAKER_02: Well, as a teenager, I was like, okay, well, that's that that might be an issue for me later, but okay.
16:17
Michael: Black and autistic.
16:18
SPEAKER_02: Sorry.
16:19
Michael: Which book is that?
16:20
Michael: The third one?
16:21
SPEAKER_02: Yes, the autistic and black.
16:22
SPEAKER_02: That's the nonfiction book.
16:23
Michael: Black and autistic.
16:24
Michael: Autistic and I had it, I had it back, I had it backwards.
16:27
Michael: I had it I had it backwards.
16:29
SPEAKER_02: Sure, yeah, no problem, no problem.
16:31
SPEAKER_02: And then so it was I just really struggled in and out, just not really doing much outside of school and track.
16:38
SPEAKER_02: I mean, just needing more additional support than my younger siblings, my younger sister and my younger brother at the time.
16:44
SPEAKER_02: My parents were very concerned, even when I was in college, when one of my one of my friends in track actually um died by suicide.
16:53
SPEAKER_02: And of course, that's that completely um hurt my mental health as well.
16:56
SPEAKER_02: I was in a different state, just trying to navigate that.
16:59
SPEAKER_02: They didn't know I was uh how how how depressed I was at the time as well.
17:03
SPEAKER_02: And just to the point where I like I had about six weeks off at the time, I just really was just I couldn't do anything.
17:09
SPEAKER_02: Basically, my parents were just kind of taking care of me.
17:11
SPEAKER_02: Basically, um I would go to I would go to practice and that was it, and I would go home and lay down and just let me ask you this.
17:16
Michael: While you were, I mean you were a division one athlete.
17:18
Michael: Yes, yes.
17:20
Michael: Uh track star.
17:21
SPEAKER_01: Yes, yes.
17:23
Michael: So track is where you really were able to shine in what we would call the the the real world or the non-nine neurodivergent world, right?
17:32
SPEAKER_02: Yes, it was definitely it definitely put the high and the high functioning, and it definitely goes to different facets of my life.
17:38
SPEAKER_02: Like when I was in research, it was research, and now it's in writing, it's writing, and now it's in business, it's business, basically.
17:44
SPEAKER_02: So it's definitely when I'm focused, I can focus basically.
17:47
SPEAKER_03: Hyper focus.
17:48
SPEAKER_02: Yes, I can hyper focus.
17:49
SPEAKER_02: Yes, absolutely.
17:51
Michael: And when you were running track and and you were having all the uh accolades that go along with that, you must have had friends and been friendly with people on the track team.
17:59
SPEAKER_02: And absolutely, absolutely.
18:00
SPEAKER_02: Most of them weren't on weren't at my school.
18:02
SPEAKER_02: Um, but yes, and absolutely that was an issue.
18:05
SPEAKER_02: But yes, I was friendly with my teammates.
18:07
SPEAKER_02: We had just normal, I think it would say normal um high school interpersonal relationships, but it was never if yes, I sat by myself at uh lunch and uh and or in the bathroom at lunch when I was extremely overstimulated.
18:20
Michael: So that's that's interesting.
18:22
Michael: So your parents obviously concerned that this is beyond the typical teenager sort of angst, the teenager depression.
18:31
Michael: And they were very uh it sounds like you know, you said six weeks you were sort of hanging in your room, not doing much of anything.
18:38
Michael: And were you hospitalized during your high school, later high school years and early?
18:42
SPEAKER_02: No, never in high school.
18:44
SPEAKER_02: I sometimes I wonder, I just kind of look back in amazement and just realize how I how I kind of got through it without without without that.
18:50
SPEAKER_02: I mean, it would have been, of course, no shame if I if I needed if I ever was hospitalized.
18:55
SPEAKER_02: But in college, I was.
18:57
SPEAKER_02: I'm in college, I was in the hospital for after my sophomore year, and that's when I was medically released.
19:03
SPEAKER_02: I I forgot that was the word from track.
19:05
SPEAKER_02: I'm and started focusing on research ever since.
19:09
Michael: So you went to you went to which college did you go to?
19:11
SPEAKER_02: Oh, sure.
19:12
SPEAKER_02: I went to Miami University in Ohio.
19:14
Michael: On uh Miami of Ohio.
19:16
SPEAKER_02: Yeah, yeah, Miami of Ohio.
19:17
Michael: And you went to I watched them on football during the football season.
19:20
SPEAKER_02: Yeah, yeah.
19:21
SPEAKER_02: And they were really they're in the headlines a lot in basketball as well this this year.
19:23
Michael: That was that was And did you you got a scholarship to go run track there?
19:28
Michael: Yep, I traded in, yeah.
19:29
Michael: And they let you out of that scholarship so that you could study because you were also obviously a brilliant student.
19:35
SPEAKER_02: Sure, yes.
19:36
SPEAKER_02: I was I was an okay student at the time.
19:37
SPEAKER_02: I was an above average student um at the time, but I wasn't, I didn't become like it was my it was my junior year of college where I realized I think for the first time I was actually I could be good at school, basically.
19:49
SPEAKER_02: Uh but I was I was a good enough school student until um until I was released from track.
19:53
SPEAKER_02: Um, yes, yes.
19:54
Michael: So during all this and up to the point that you were diagnosed and finally it must have been some kind of a relief on some level when you you got the autism diagnosis, right?
20:03
SPEAKER_02: Yes, I almost went through, I would say just that there's a um a there's a phase that people call it through, that people call it now.
20:10
SPEAKER_02: Um I forgot exactly what it was called, but you kind of go through um just kind of be resentful about like, oh, if I just knew earlier, if my parents knew earlier, this could have I really could have gotten the help I needed before.
20:21
SPEAKER_02: If I if then also, and then just kind of mourning the life, like kind of lost years for for me, it was from depression that um I could have had extra support if I if I knew a little bit more about myself.
20:34
SPEAKER_02: Um and then I just had honestly, after a while, I just felt really I felt a lot I felt a lot kinder to myself.
20:42
SPEAKER_02: And actually the the therapist who evaluated me, she sat me down.
20:46
SPEAKER_02: So first she kind of first we left.
20:49
SPEAKER_02: Um so she when she kind of told me my score, she's like, So, like you seem like you have trouble, you're struggling with um your processing speed, you're struggling with like the like just going all through all this like levels of the track of the the assessment.
21:00
SPEAKER_02: I was just like, okay, so am I autistic?
21:03
SPEAKER_02: She was like, Yeah, yes, like yes, you're autistic.
21:06
SPEAKER_02: And then but then she's like, okay, Kayla, I so she was like, I need you to um look, you know, you you've you've you know you know the space.
21:13
SPEAKER_02: I want you to look exactly at your scores.
21:14
SPEAKER_02: So she showed me like this is high functioning, like this is what's it called?
21:18
SPEAKER_02: Um, well now it's like called level one, level two, level three.
21:21
SPEAKER_02: And she wanted to show me like I was like level two, like going like further down level two.
21:25
SPEAKER_02: She's like, you like if somebody tries to go like, oh, like yo, you're you don't need as much help as other people, you you do.
21:31
SPEAKER_02: You do if you want to have help, if you need help, it's okay to ask for help.
21:35
SPEAKER_02: You're going to this grad school, you're going to Nigeria, like make sure you get help.
21:38
SPEAKER_02: Basically, you make sure you have support.
21:40
SPEAKER_02: You deserve support.
21:41
SPEAKER_02: I'm just like everybody else.
21:42
SPEAKER_02: And I was just, it was just really kind of her to say that.
21:44
SPEAKER_02: Like, just like look at your score.
21:46
SPEAKER_02: Like, just because you're doing all this, that, and that, like, look at your score kind of thing.
21:50
SPEAKER_02: Yeah.
21:50
Michael: That's interesting.
21:51
Michael: So, so here's your your therapist, and you guys have to have a little chuckle over the fact that she's actually diagnosing you with autism.
21:58
SPEAKER_01: It's like, I'm just like, duh.
22:01
Michael: Sorry.
22:02
Michael: That's a scientific term, duh.
22:04
Michael: Um and and and then she says to her to you, you know, you're not as you're not as you're not as well put together as you might think you are.
22:13
Michael: So don't afraid to ask for help.
22:15
SPEAKER_02: Yes, exactly.
22:16
SPEAKER_02: That's awesome, isn't it?
22:17
SPEAKER_02: It was amazing.
22:18
SPEAKER_02: It was amazing.
22:19
SPEAKER_02: I I think I remembered that ever since.
22:21
SPEAKER_02: Yes.
22:21
Michael: That's like a gift of that's like gift, that's kindness tenfold right there, for her to say that to you.
22:28
Michael: Uh and and more importantly, for you to be able to hear it is is really kudos to you for that, too.
22:34
SPEAKER_01: Sure.
22:34
SPEAKER_01: Thank you.
22:35
SPEAKER_01: Thank you.
22:35
SPEAKER_01: Yes.
22:36
Michael: You know, because obviously you know working in this space that there's a lot of denial.
22:41
Michael: There's a lot of family denial, there's a lot of individual dilemma.
22:44
Michael: So let's add and let me ask you that.
22:45
Michael: How did your family feel once you were finally assessed and and diagnosed at that level at with the autism?
22:53
SPEAKER_02: Sure.
22:53
SPEAKER_02: I would say going back to the caregivering scenario when my parents, especially when I was out at the hospital when I was when I when I was 23 at the time, yeah, my parents just stayed with me for a while.
23:04
SPEAKER_02: I then my parents just it was just more of like just caregiving role for my parents.
23:08
SPEAKER_02: They were just especially my they were just always making sure I was taking care of able to take care of my.
23:12
SPEAKER_02: Myself during that time for weeks after then I stayed with my aunt down the street for months after that while I was still going to work just because it was good, it was a good routine and also I liked work as well.
23:22
SPEAKER_02: And I was good at it.
23:24
SPEAKER_02: And when when they knew they were yes, they were, I mean, they were surprised and not surprised.
23:30
SPEAKER_02: It was it was a good conversation about just kind of talking about like, oh, who else in the family might be more of like a high-level autistic basically as well?
23:38
Michael: We all gotta point those fingers, like right?
23:41
Michael: Oh, this is coming from your grandmother.
23:43
SPEAKER_02: Exactly.
23:43
SPEAKER_02: Yeah, we had nice little um yeah, chuckle about that and just yeah, just kind of shaking our heads about wondering why it took took so long.
23:50
Michael: And right, did they go through that same level of that same degrees of let's call it degrees of loss, right?
23:56
Michael: Did they go through that frustration, that anger and feeling of of lost years and things?
24:01
SPEAKER_02: At least they didn't they didn't tell me about that, so I'm not sure.
24:04
SPEAKER_02: I'm not sure, but I know my sister was very, very confused and just kind of like upset on my behalf, going like, why did anybody know this okay about it kind of thing?
24:12
Michael: Yeah, just because we look back I think that's part of the angry part of loss too, right?
24:17
Michael: Yeah, the stages of grief, I guess.
24:19
SPEAKER_01: Absolutely, you know.
24:21
Michael: So one of the things that I think is important one of the things that I that I talk about in this podcast to try to really instill upon people that you brought up in Autistic in Black.
24:35
Michael: You talk about, and I love the uh the Kwanzaa term that you use.
24:39
SPEAKER_01: You know, yes, yes.
24:42
Michael: See, I did my research.
24:45
Michael: Because well well, tell everybody what you think that word means, and and I'll tell you why I think it's important for this for this podcast and this audience.
24:53
SPEAKER_02: It's it's funny, I'm I'm glad you mentioned that because Ujima, when I when I when I was researching the the principles of Kwanzaa, I saw that one was just like a collective responsibility we all have for each other, not just for yeah, not just for a daughter and a mother or a mother of a daughter, but also just just all of each other, like being kind to each other on day-to-day lives.
25:14
SPEAKER_02: Actually, the and the Ujima sections of my book actually kind of describe my day-to-day life, I guess, just in different facets than when I was run up, probably since I was 12 to um when I was whenever before I before the book came out when I was 27, I guess 28.
25:29
SPEAKER_02: And then and just different facets of where I could have been better, like just for like the sake of like just our community at large, and where other people could have been better with with me, with other people and the community at large.
25:41
SPEAKER_02: And it's been I thought that was I I put that element at first just for the intro, but then but then after a while, after taking some deep breaths and really just kind of realizing the bravery about people who kind of talked about their their their challenges, their triumphs of sharing being.
25:58
Michael: Yeah, let me let me interject so I can explain to people about the book.
26:01
Michael: The book is a series of interviews that that Kayla did with I don't even know how many 20 black people with autism with autism.
26:13
Michael: Yes, and varying levels of autism, some verbal, some non-verbal.
26:19
Michael: Really interesting, and and so that's what she means when she's talking about the different stories that she heard and pulling them together, because that's that's it, it's important and it's such a a great way to expose the difference, the different types of autism, the different the different journeys that people are on.
26:42
Michael: And talking about the Kwanzaa Ujima in this term really resonated with me in that regard.
26:49
Michael: Because of course, I mean, here you you've been from you know the United States to to Nigeria, you've gone all over the country in terms of your work, you've gone, I mean, all over the world in terms of people that you were interviewing, whether it be via Zoom or or emails or whatever.
27:08
Michael: But to you know, but you explored various journeys.
27:11
Michael: And I think that when I heard that, that's what I took out of it.
27:14
Michael: I'll tell you what I wrote in my note.
27:16
Michael: I I wrote that that that Kayla wants to have people hear the similarities in the stories that they have for those who are dealing with autism.
27:28
Michael: Like my attempt to link family.
27:30
Michael: So I I I that really rang a bell with me.
27:34
Michael: Does that does that make sense to you?
27:35
SPEAKER_02: Yes, absolutely.
27:36
SPEAKER_02: Absolutely.
27:37
SPEAKER_02: I wanted to yeah, link us all together and show that we're not we're not alone, we're not one big monolith, we're not, yeah, we all have different challenges, but we're all in this together.
27:45
SPEAKER_02: And we even, yeah, those of us that are not autistic or don't have a family member's autistic, we could all support each other.
27:50
SPEAKER_02: Yes, absolutely.
27:51
SPEAKER_02: Yes, you got it.
27:52
Michael: Well, and and frankly, I say this all the time that okay, you are not a person with autism.
28:00
Michael: You are so much more than that, right?
28:02
Michael: Absolutely, yes.
28:03
Michael: You are, I mean, your your resumes will blow anybody out of the water.
28:06
Michael: I challenge anybody to put their resume up against yours.
28:09
Michael: But you know, I am not a person with schizophrenia, I'm not a person with anxiety, I'm not a person with depression.
28:14
Michael: I'm not, you know, I say this all the time.
28:17
Michael: If I just introduced myself as a lawyer, right, I've already alienated half the room.
28:22
Michael: Because people hate lawyers, you know, people hate lawyers.
28:25
Michael: So that's don't, you know, it's important that we don't let these these identifiers become our personality.
28:33
Michael: And they also do not make our stories.
28:37
Michael: And one of the things that you point out, as I said earlier, is that yes, okay, these k these folks all have autism, but they are all different people.
28:48
Michael: Their journey may be similar, but it's also very individual.
28:52
SPEAKER_01: Yes.
28:53
Michael: Were you able to learn?
28:57
Michael: And I'm sure you were.
28:58
Michael: I mean, this is and this is the point.
29:00
Michael: We can all learn from the journey you're on.
29:04
Michael: I can learn from your journey, you can learn from my journey, and we need to be able to be in that space of sharing and talking about it.
29:11
SPEAKER_02: You got it.
29:12
SPEAKER_02: You you you set up exactly what I was gonna say brilliantly, actually.
29:15
SPEAKER_02: Yes, absolutely.
29:16
SPEAKER_02: So I why when I was interviewing, so well, let me start by saying when I first wrote the book, I planned to just mainly put it like chapter by chapter, just how I have it, but without myself involved that much, not without my personal story, I was still just kind of coming out of the industry academia um phase, just kind of a little bit more protective of myself.
29:40
SPEAKER_02: I wanted to put myself more as like an expert on autism, expert and neurodiversity, and more on the academic side.
29:47
SPEAKER_02: When I was listening to so many stories, hearing so many people be so vulnerable, sharing their stories, talking to so many, I talked to speech therapists, um, people's uh mothers, people's children, and uh just seeing like just how much they were willing to share and and just for the sole purpose of helping others, giving others comfort and helping others know how to help other help other people as well.
30:09
SPEAKER_02: I realized my story needs to be here too.
30:12
SPEAKER_02: I need to, I need to do this, this, this, this whole space justice and put write as well as I can about about the other Black autistic stories, but then also highlight my stories and how they intersect.
30:23
SPEAKER_02: That's exactly when I added the Ujima sections in between each chapter, parting, putting about 500 word essays of my life as well.
30:31
Michael: That was And that would be a crime if you didn't.
30:33
Michael: It would be a crime if you didn't.
30:34
Michael: I honestly, because on so many levels, because it does it helps you, it helps me to understand you, it helps you to understand yourself.
30:42
Michael: Absolutely.
30:43
Michael: It helps people that you know you're not alone in this, folks.
30:46
Michael: There's people out there that are going through this too.
30:49
SPEAKER_02: Absolutely.
30:49
SPEAKER_02: Um after after I submitted that book to my publisher, I I knew deep down it was time to publish, it was time to pivot my my nonprofit from more, okay, this is research, this is for others to more like, hey, I am I am one of I am somebody who needs help as well.
31:09
SPEAKER_02: Basically, I I am in a position where I I've lived through mental illness.
31:13
SPEAKER_02: I've lived I I've experienced I'm autistic as well, and just kind of putting myself in the story as well.
31:19
SPEAKER_02: And of course, of course, I'm reaching out to others as well as that's interesting.
31:23
Michael: So you actually in in writing this book, the cathartic piece of it or the lesson that you learned from it was hey, I I I need to not only be an academic about this, but I need to live this or allow myself to live it and bring it into your nonprofit of the I'm heard mission, right?
31:42
Michael: I'm in her I'm heard uh incorporated.
31:44
SPEAKER_02: Yeah.
31:45
Michael: Tell people about that, what you're trying to do there, because and and this will bring me to another question that I had for you.
31:50
SPEAKER_02: Sure.
31:51
SPEAKER_02: I'm heard is a nonprofit that aims to end the sigma of mental illness in like underserved communities in general.
31:59
SPEAKER_02: It started with minority communities, it now's been more underserved.
32:03
SPEAKER_02: Um it's been we've expanded it to religious minorities, um neurodiverse, um neurodivergent individuals, um, older adults as well.
32:10
SPEAKER_02: Yes.
32:10
Michael: Really?
32:11
Michael: Older that's that's yeah.
32:14
Michael: And and when you first started, you were obviously focusing, as you said, minority populations.
32:23
Michael: And one of the things that I'm curious about in your travels and in your studies and in your academic life how uh stark, how right blatantly in your face is the difference in the world, not only here in the United States, but also, you know, in Nigeria, in very in England, in these places that you've been and and seen.
32:47
Michael: How different is the treatment of folks with neurodivergent issues or mental health issues, etc.
32:53
SPEAKER_02: Sure.
32:54
SPEAKER_02: Um, I think I can speak best for US, Nigeria, and England, just because I lived in all three.
33:00
SPEAKER_02: Um, but if I were to rank, I would say Nigeria, they have amazing doctors.
33:06
SPEAKER_02: They're extremely brilliant doctors when they um when it comes to the US to come to England, they they become like world renowned, like just almost consistently.
33:13
Michael: They come here, they come here, get world renowned, and go back to Nigeria.
33:17
SPEAKER_02: Uh sometimes.
33:18
SPEAKER_02: Sometimes.
33:19
SPEAKER_02: But the problem is there's fewer of them.
33:21
SPEAKER_02: There is, I think Nigeria has about 250 million people there.
33:25
SPEAKER_02: And then I think there was a study that showed that there was about 80 psychiatrists.
33:29
SPEAKER_02: Um my god.
33:31
SPEAKER_02: Yes, absolutely.
33:32
SPEAKER_02: And so the mental health academic is just anybody who has severe mental illness, usually they're homeless or they're they're deceased or they're in they're in an orphanage, depending on their age, for example.
33:44
SPEAKER_02: And it's autism the same.
33:47
SPEAKER_02: Um, autism the same.
33:48
SPEAKER_02: I was I talked about that with interviewing, actually interviewing um my colleague Bolu, who I it's people people can't believe the story either, who is just my um, I lived with the medical students in Nigeria, and I and one of my one of my neighbors was Bolu.
34:03
SPEAKER_02: She was a medical student.
34:04
SPEAKER_02: Of course, of course, she became a medical doctor.
34:06
SPEAKER_02: And she she saw that I was went to Oxford after I graduated.
34:10
SPEAKER_02: She wanted to go to Oxford too.
34:11
SPEAKER_02: So she became a road scholar and was like a renounced psychiatrist.
34:16
Michael: Unbelievable.
34:17
SPEAKER_02: It's an amazing story, honestly.
34:18
SPEAKER_02: I'm so proud of her.
34:19
SPEAKER_02: I'm so proud of it, but and and we I had a really nice interview through through my blog series um years back, and then also my book as well, just about the state of the state of of stigma in in Nigeria regarding mental health and neurodiversity and autism.
34:36
SPEAKER_02: It's not it's not really existent as far as most people are concerned, unless it's extremely severe.
34:42
SPEAKER_02: When it's extremely severe, it becomes more of like a spiritual problem.
34:45
SPEAKER_02: Most people usually go to their community leaders.
34:47
Michael: Um they go to the which, of course, usually the pastors, the leaders at um there is still there is still a tremendous amount of the tribal mentality there where things are taken care of in that closed community.
34:58
Michael: Exactly.
34:59
Michael: I I've been to Africa three or four times, but southern.
35:03
Michael: So all over South.
35:04
SPEAKER_03: Oh, South Africa?
35:05
Michael: Southern, South Africa, and I'm not here.
35:07
Michael: South Africa, Zimbabwe, Namibia, Zambia, Botswana.
35:11
Michael: I I just love it.
35:12
Michael: And I love it.
35:13
Michael: Oh, I want to go there.
35:14
Michael: I love the people, I love the the culture.
35:17
Michael: And it's interesting.
35:18
Michael: I mean, it's it's a fact of life.
35:19
Michael: It it is very much a still quite tribal in their the way that they connect with their.
35:27
Michael: I mean, here's the World Cup going on, right?
35:29
Michael: It's very similar.
35:30
Michael: Oh, sure.
35:31
Michael: You see that you see that okay, here in America, you know, if the port Portuguese are playing every Portuguese bar is packed with Portuguese who they've never seen each other before.
35:41
Michael: But it's interesting.
35:43
Michael: It's very interesting.
35:44
Michael: So I could I guess I could have guessed that about Nigeria.
35:48
Michael: How how would this how is England ranking?
35:51
Michael: And and I'm wondering if it's if it's an acceptance thing, but anyway, how how is England uh work out in terms of acceptance thing?
35:59
SPEAKER_02: It's a lot more people the everyday person understands uh the the concept of like, oh, this person's going through a mental health crisis.
36:07
SPEAKER_02: This person might be having a mental um autistic meltdown, for example, which is helpful, especially when you go up to like people, for example, police officers and take nurses.
36:16
SPEAKER_02: But it's it's all it's all helpful when um when everyday individuals kind of understand that it's just more of it's just more common knowledge, I guess.
36:25
SPEAKER_02: And and it's been more research being done, more I would say more activism regarding how to treat people in the clinical settings and inpatient psychiatric facilities, to even like just in emergency rooms with people um experiencing severe um mental illness in everyday life, people booking me to speak um in different workers.
36:47
Michael: It's become more part of we're more willing to talk about.
36:50
Michael: I still say that mental health issues, and I include autism with that, whether I should or not.
36:55
Michael: I know it's neurodivergent and it's probably I'm probably using the terms wrong.
36:59
Michael: I don't mean to insult anybody, but but let's just say, you know, any kind of any kind of thing that we can't see, like your broken arm, we can see.
37:07
Michael: We can't see your broken brain, right?
37:10
SPEAKER_01: Sure, sure.
37:11
Michael: Yes.
37:12
Michael: They we are definitely talking about it more.
37:15
Michael: And I I've been doing this work for 25 years.
37:17
Michael: When I started 25 years ago, and I would talk about the need for care coordination and interrelated service systems that actually talk to each other and shared resources amongst each other.
37:27
Michael: Imagine such a thing.
37:28
Michael: People thought I had 16 heads.
37:31
Michael: So at least we're getting to the point now where people don't look at me like I'm crazy when I'm having when I'm talking about this, right?
37:37
SPEAKER_01: Sure, absolutely, absolutely.
37:38
Michael: I think one of the scary things is is that America and England are probably are, if not the number one and number two, or number one and one A in terms of the advancements of understanding mental mental health, et cetera.
37:54
Michael: And that's scary on a level because it this is as good as it gets on a level.
38:00
Michael: And that's that's frightening, isn't it?
38:03
SPEAKER_01: Yes.
38:04
SPEAKER_01: Yes.
38:05
SPEAKER_02: Yeah, I uh yes to all of it, just to summarize, I guess.
38:08
SPEAKER_02: Um I would definitely say also the issues in the United States, just getting treatment, ongoing treatment for for all of the above, honestly, is expensive in the US.
38:20
SPEAKER_02: Um, it can be expensive.
38:21
SPEAKER_02: In the UK, it's subsidized, a lot of it's free, but then then you hear about people being on two-year wait lists for diagnosis.
38:29
SPEAKER_02: You hear people about people when they uh they have to ration their medicine because it's they're not able to get it refilled in time.
38:34
SPEAKER_02: And so it's a it's there's definitely pros and cons to the everyday treatment on both on both sides of the pond, I guess.
38:43
SPEAKER_02: Yeah.
38:43
Michael: Well, I mean, I I'll tell you, I I talked to experts mental health law coming out of New York in New York City, and the backlog there is just tremendous too.
38:54
Michael: I mean, things that take, you know, a month, six weeks in in certain parts of the country can take a year and a half down in the city just to shear it out, to shear volume.
39:03
Michael: And and that's scary too.
39:05
Michael: So Absolutely, absolutely.
39:07
Michael: I'm I'm really I'm I'm really impressed with everything that you have going on and that you've done.
39:13
Michael: And and I'm really thrilled that you you took your time to be here with me today.
39:17
SPEAKER_03: Thank you.
39:18
Michael: You know, I am hope that you will send in fact, why don't you just tell everybody where they can find you, where they can find about your work and some of the other things you got going on now.
39:28
SPEAKER_02: Absolutely.
39:29
SPEAKER_02: The most I the most connected I am.
39:32
SPEAKER_02: I don't know the I don't know the word for it, but the best place to reach me, I guess that's the that's the word, is um LinkedIn.
39:38
SPEAKER_02: And just type in Kayla Alan Omeza, K-A-L-A, and then Omeza O-M-E-I-Z-A.
39:42
SPEAKER_02: Um, you should be able to find me, just it's an uncommon name.
39:45
SPEAKER_02: And and follow me there, connect with me.
39:47
SPEAKER_02: I'm happy to happy to talk.
39:48
Michael: I'm uh your books are available wherever people find their books.
39:52
SPEAKER_02: Absolutely.
39:52
SPEAKER_02: Yes, absolutely.
39:53
SPEAKER_02: Google my name and books, and then you'll find a great great place to to uh to buy them wherever you're comfortable buying them.
40:04
SPEAKER_02: Yes.
40:05
SPEAKER_02: Um you can go to I'm heard.world.
40:07
SPEAKER_02: Um that's my nonprofit website.
40:09
SPEAKER_02: Um, I also recently started a home care agency as well in my local community.
40:13
SPEAKER_02: And you can go to herdhome.com.
40:15
SPEAKER_02: It's one to very, very similar to your your journey as well.
40:18
SPEAKER_02: Just really want to kind of be more of the individual family dynamic and kind of support people instead of more in the instead of because I felt like there's a lot of awareness and and awareness has been has and awareness and what's the word?
40:31
SPEAKER_02: Also acceptance and the societal level, the community level is so much, it's so much better than um it was when I started my nonprofit.
40:39
SPEAKER_02: But um, I really want to work in the the family and the individual unit as well.
40:42
Michael: And so I'm so happy that you could be here because yeah, and I think that your work really lends itself well to that.
40:49
Michael: You're you're an insider, man.
40:51
Michael: You got the inside scoop, right?
40:54
SPEAKER_01: Yes, we have to go.
40:55
SPEAKER_01: Yes.
40:55
Michael: Uh so yeah, so we will certainly, I hope we can certainly continue to collaborate.
41:00
Michael: Um, I'm going to instruct and and I'm gonna be uh getting onto your stuff and follow your stuff, and hopefully you will join our care coalition and okay, wonderful all the people here.
41:13
Michael: Check out Kayla's stuff, she's she's really amazing.
41:16
Michael: So, again, Kayla, thanks for being here.
41:18
Michael: And uh, I know I have not heard the last from you.
41:22
SPEAKER_02: Thank you very much.
41:23
SPEAKER_02: I appreciate it.
41:24
SPEAKER_02: Thank you.
41:27
Michael: Well, guys, if if if Kayla's story and Kayla as a person doesn't impress you, I don't know what will.
41:35
Michael: Um, you know, as she she perfectly uh personifies and illustrates none of us is a fixed entity, none of us is just a diagnosis category.
41:49
Michael: We're all works in progress.
41:51
Michael: Um our systems are not just sets of rules, um, they're they're they're they're probably better said that they're things that are meant to be broken if they're not working and put back together by by folks who have lived experience like like uh Kayla and so many of you do.
42:11
Michael: So if you're a professional in the field, if you're a person trying to understand what you're going through, if you're a family member trying to understand um what your loved one or your family is going through, just remember that things are a matter of perspective, right?
42:28
Michael: And Kayla's perspective here today was just so interesting and engaging uh and universal that I just had to get it to you.
42:37
Michael: Um and I think it's important to remember that you don't have to figure it all out today, but you gotta be willing to start having these conversations and being part of these movements.
42:49
Michael: So huge thanks to Kayla for joining us and for putting it out there.
42:55
Michael: Uh check out her books and the information that I'm providing in the uh in the description today.
43:03
Michael: Um I think you're really gonna like her.
43:05
Michael: I think you're really gonna uh like what she has in in terms of her writing and her mission in life.
43:11
Michael: So until next time, just keep holding it together, even if it's just kinda.