March 8, 2023 • 36 mins
Author Kala Allen Omeiza joins Carol to talk about neurodiversity advocacy and her journey to being diagnosed with autism at 24. Kala shares with Carol how race and disability intersect in her life as a Black autistic woman, and how she poured her life experiences into her young adult novel, "Afrotistic". Kala felt out of place and socially uncomfortable as a young Black girl growing up in predominantly white communities. She talks with Carol about how feeling so different for so many reasons impacted her childhood and may even have complicated the discovery of her neurological issues. She describes the journey to her autism diagnosis and how her family supported her along the way. In this captivating episode, Kala offers valuable advice about how parents and caretakers in the Black community can be more patient, perceptive and proactive when caring for their neurodiverse children. Follow us at @GroundControlParenting and on www.groundcontrolparenting.comSee omnystudio.com/listener for privacy information.
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Speaker 1 (00:05):
Hello, and welcome to Ground Control Parenting, a blog and
now a podcast created for parents raising black and brown children.
I'm the creator and your host, Carol Sutton Lewis. In
this podcast series, I talk with some really interesting people
about the job and the joy of parenting. Today, I
am thrilled to welcome Kayla Allen Omesa to the podcast.
She's a co founder of a fintech company and the
(00:27):
author of Afortistic, a wonderful book for young adults. Afortistic
tells the story of fifteen year old Noah and her
efforts to navigate high school, adolescence and autism. Kayla knows
quite a bit about autism, having worked on various research
projects on autism, psychology, and mental health at Harvard Duke
and as a US Fulbright scholar in Nigeria, and because
(00:47):
she was diagnosed with autism spectrum disorder at twenty four
years old. She is an avid mental health services volunteer
and mentor. She's a graduate of Miami University and the
University of Oxford. An American citizen, she lives in Oxford
with her husband Daniel. Welcome to Ground Control Parenting, Kayla. Oh,
thank you very much, Farel. I'm happy to be here.
Up until now, I've been talking with parents about various
(01:08):
aspects of the job of parenting black and brown children.
But I'm so happy to have you here today to
give us the different and really important perspective of how
you were parented, particularly through your autism diagnosis. I'm excited
to talk with you today about your book, your mental
health work, and your thoughts about what parents might want
to know about supporting autistic children. So let's get started. Okay,
(01:31):
So first, Kayla, tell me about where you grew up
your siblings. Where was home for you? Sure? So the
short answers to that is that I grew up in
a town outside of Buffalo, New York. But I actually
it moved to that town until I was about twelve
going on thirteen. My dad was a military officer actually,
so we moved around a lot when I was really young.
(01:53):
I think most missinaib we were living in Japan for
six years from when I was six to twelve. So, um,
so I was nine and then and then I'm min Okanala,
JAPANI until I was all before moving to the saber AffA, Gaffonia. Wow.
Oh yes, I have two siblings. Um, I have a
younger brother and the younger sister. Wow, that's great. So
(02:14):
it's really interesting that you received your autism diagnosis when
you were twenty four. But you've said that there were
ways you felt or emotions that you experienced while you're
growing up which could have given some clues to your neurodiversity.
Can you talk about the times in your childhood and
I imagine it may have been exacerbated by having to
move around a lot, but when you felt that you
(02:36):
were sort of walking a different path from your siblings
or your friends when I was, especially when when we
were in Japan before that hard to differentially, especially in hindsight,
but I did feel like I was skimming a lot
when I was when I was a kid specifically, and
my parents sorry you said skimming, Yes, so actually s
(02:58):
T I am m im g sou stimming. They have
like these stimming behaviors some people do to help you
kind of cope on when you're overstimulated, for example, And
I think that probably a really common phenomenon with that
is I kind of flapping your hands walking back and forth,
um um, like kind of picking my skin around your nails.
(03:20):
And I've done all them almost my entire life, and
so I was definitely doing that. Were they self soothing
where they designed to make you feel better? Yes, yes,
um I didn't know that the time, but honestly, I
would usually do that when I was already stressed actually
so um So for a while, I actually thought I
was doing it because yeah, because I was stressed, I
(03:41):
was making me more stressed. But later I realized I
was doing it. It was actually the people better I.
When I was growing up, I just realized my brother
and sister they were making friends and keeping friends, and
I just I felt like I wasn't doing that as
well as as they were. And they were younger than
me too, So I just felt like I should have
been like kind of the role model, and that's what's
what shouldn't. I was just really surprised that I wasn't.
(04:02):
And then yeah, I also had especially when I was
in middle school, I would have like this, really it's
really dangerous in behavior. I would no one, no one
ever saw me do this, but I would go to
a closet in my room and just like kind of
really lightly or sometimes even slightly slightly more aggressively, but
kind of bang my head against the wall because I
was just really overwhelmed by something, by just something that
(04:24):
happened in school day and never just do that for
like thirty minute of a time when I was specifically
in middle school, but I also on high school and
even when I came over college sometimes too. Yeah, I was.
I was always convinced I was adopted. For example, that
was just completely set that that was the case. Really
annoyed him. Here, Now we were adopted. We were, And
(04:45):
I never, never, one hundred percent went away until I
was twenty three when we all took good ancestry DNA
tests and just because I just out of curiosity out
for Christmas, and when I was able to find police
on the DNA test that my parents and my parents
and my siblings or my siblings, that's when I stopped
bringing it up. Wow, that is that is a really
(05:06):
good use of that science. I'm sorry it took so
long for it to come out for you to feel
that way, but so well, how are you able or
were you able to share the way that you felt
with your siblings and your parents. I mean, they could
see you doing some of these stimming I mean, I'm
so sorry to hear about the banging, but maybe they
could see a bruise on your head. I mean they
(05:27):
could see some evidence of this, And how did you
share it with them? Or did they know what was
going on it? To be fair, I didn't really. I
wasn't the best communicator when I was young, but I did.
I would. I would come home for school really angry
or really stressed. My parents even told me just it
was looking back, that it just seemed like I was
just being Yeah, I was just being a teenager. You
(05:48):
just upset about something. Yeah, when like they adopted the
situation came up, for example, they just thought I was
still being a teenager and just still just not really
trying to find my place in the world. So I
did feel like I was different. My parents could see
some some signs of like for example, just they would
recall like when I was especially a teenager, I would
seem kind of more spaced out than my peers were
(06:10):
were it kind of blend in a little bit more
when I as a child, but especially when I was
a teenager, I was still doing that a little bit
more than aybody else, or a lot more than everybody else.
But I think, like taking all lot together, even when
I would express that I wasn't really feeling well, and
I didn't. I didn't feel like I've been in I
feel like I was adopted. I think that was just
me basically. Yeah, I was just a teenager and I
(06:31):
was just my personality. So I know it's tough in hindsight,
but I know that parents listening would be really interested
in hearing. Is there anything that you now looking back
think that perhaps your parents might have been able to
be more helpful when you were younger? I mean, are
there things that you now knowing what you now know
(06:52):
about how you were feeling? Right? Is there anything you
wish they would have known or done something differently? Yeah,
assuming that like ass of awareness and a lot of
mental health awareness wasn't still wasn't in their radar. Basically,
I would wish, yeah, my parents would just sit me
down and ask more. They would have asked more why
my why, questions like why do you feel this way?
(07:13):
You just yeah, you just had this really good grade
in our test. Why why are you feeling like, yeah,
you don't belong here? Why are you feeling like you
don't belong in your own family, your your in your school.
I wish they were a lot more and why questions.
Of course, I don't know how I would have responded,
especially to my parents if Yeah, but I felt like
a chance even for myself to just just to think about,
(07:34):
like why I was hurting. Yeah, just even for that,
just for that use case specifically, just to kind of
introspect a little bit would have been really helpful. H
So you mentioned that you mentioned school and that even
if you did well in school, said if it wasn't
sort of calming, so generally calming. How was school for
you when you were young? I mean, you clearly have
(07:54):
been a high achiever sort of Oxford. You've done all
this great research. You've said that it didn't start out that.
I mean, how was school for you in the early years.
I always say that I was very woefully averaging for
most of I was. I wasn't really winning any academic
awards or anything. I wouldn't like I would always go
above and beyond for any creative writing tasks. But of
(08:16):
course that usually that that stopped being taught or implemented
in the school school productor I was like passing middle school.
I think, yeah, I didn't really do all that well.
I can't say I was terrible, but I wasn't. I
graduated from high school and the bottom half of my class,
so just for reference, I was probably in the I
think I was in the top end of the bottom half,
but like there was thought it was still the bottom half. Um,
(08:37):
And I felt like I really worked hard too, so
I felt like I was very woefully average. But then,
I mean, but then something happened. So what happened? So
so when I went to when I went to the university,
actually I majored in psychology, so I wasn't so like again,
I wasn't like this terrible person in high school. But like,
for example, I took any piece psychology with class, and
(08:59):
I did, I did decent eye and I got like
a like a D plus or something, and I just
really I liked it too, And I think I did
really well because I really, I really enjoyed one this morning.
I really liked the neuro science like topics that we're
talking about specifically, So I just like on a whim,
decided it's a major. And in college I wanted to
parents psychology and minor and neuroal science ideally, And the
more I got into those classes is the absolutely better
(09:21):
I did. I just four point thos, we're just coming
out of nowhere basically, and I yeah, Yeah, I graduated
with a pretty high GPA. I worked extremely hard on
like research projects that weren't that weren't necessary, Like I
just wanted to do it, and obviously it looked really
good to find to graduate school. So that's how I
was able to get a lot of the research opportunities
after I graduated it and eventually get into Oxford for
my master's program. Wow, so something clicked. Before I go
(09:44):
more into that, I wanted to ask you when you
were growing up, from beginning elementary school through middle school
of high school, did you go to school with a
lot of other black stuffs. I think going into high
school there was one one other black girl in my
grade and then another black boy in my grade, and
going into high school, I think when we graduated there
was about in my classified two pudding, they were about
(10:06):
three or four others at that point, so there it
was very low. Wow. So did that complicate your efforts
to fit in at all? Yes, I would say so.
I think, especially as a black girl, I think I
had a lot of stereotypes against me that didn't work
in my favor. That I had to overcome basically and
a lot of like just typical high school experiences. I
(10:29):
felt like I wasn't I was kind of like left
out on like I felt like no one was interested
in like going on a date with me, you're going
to dance with me for anything, And even if I
was more social m I felt like that was just
not just not a thing for the black girl's heart
whatever reason, and it was, Yeah, it was just unfortunate.
So yeah, yes, I felt like that was an issue.
But it was always the case when I was growing
up because I've lived in Japan too, so I never
(10:51):
really thought like, oh, I'm different because of racism or
because of because maybe I'm out to stick or think
I never really crossed my mind. It was just like, oh,
I'm just this black girl navigating while just being plopped
into like another culture basically, and I need to navigate
that I'll came back it definitely it made it impossible
almost for a lot of people to see that it
was another underlying condition going on. So m okay. So
(11:13):
another question about college, was it easier for you socially
as well? Or was it just great to dive right
into the book so it didn't matter as much. Right,
it was. No, I was absolutely not easier me socially.
I think it's unfortunate and my experience in college. Luckily
it wasn't the case after college, but in my sparents
of college, I felt like there was this one way
(11:34):
to be black, and like, at least with the people
that I was, that I knew, and I was not
that one way. It was funny at first and I
would be like, oh, sorry, I don't know how to
place space. I grew up with my people could think,
and they they were just laugh of stuff. Like those
kind of instances just kept coming up and coming up
and coming up. So it just like it became extremely
hard to fit in even with among the other other
(11:56):
black individuals. Yeah, yeah, now that makes that makes sense.
So us forward through the college and you are you
found this whole area of research was exciting, You're excelling
in it, and then you finally were able to get
to the autism diagnosis? What led to it? What prompted
you to discover this? Right? So, um yeah, I was
(12:17):
working at a Duke at the time and the Brain
Imaging Analysis Center, and um I was I was just
having mental health issues, but I was also having like
a really bad following out with friends at the same time,
which is like exacerbated all my health. I got into
the fork right I got into Oxford is like almost
like two months later, the doctors knew why I was.
I was going in and out of like impatience. It's
(12:38):
like it's like he as for units because I was
really not hoping well. So I went to doctor trying
to pendlet everything was fine. I was like, I just
need you to sign off on this that I need
to go and I'm going to go and work in
Nigeria by myself for nine months here. And You're like, no,
you need to I'm not going to sign this until
you go to individual therapy once a week and a
group therapy once a week or six months at least,
(12:58):
and then once you lets you have some positions telling
like noting that you're progressing and like knowing that you're
a little that you have a little more hoping skills
to be in another country by yourself, and then I'll
sign off. So I did that. So that was just
basically my motivation to kind of get more structural help,
not just kind of on and off help. And so
I did that and one of my individual therapy sessions.
(13:21):
They were m Yeah, there was definitely some even I
knew too. There were definitely some like clusters that of
symptoms that could really easily fit like a DSM diagnosis.
So she were just trying to see what other underlying
condition it was. I mean, I just mentioned to her that, like,
I just don't I never wear jeans, for example, I
(13:41):
don't really I tried to when I was in high school,
for example, and I just it was it was the
worst thing ever, So I haven't more genes earning. That's
too tight on me. And then she when she asked
a little bit more questions about her, she realized, I'm
really eversinating us too bright, too loud. Yeah, she and
I agree, but maybe it makes sense to return me
to an autism assessor just the same. And actually the
(14:02):
more I was explaining my symptoms, the more I believe
actually I could be but I'm pointing a sure and
because and it also seemed like too big of a
thing for me that for it to be missed, and
for ever work, I wasn't all it wasn't alboisure either.
So when I did I did the assessment, it was
two weeks total, but like it was two sessions that
were about like three hours each. I think it was
really it was really intense, and yeah, they came out like, yeah,
(14:25):
that I was autistic, and then I was awful. I
as anxiety too, Yeah I was. I was surprised actually
about yeah. Yeah, well that that that leads to my
next question. So give me all of the different ways
that you must have reacted to this. I mean, because
you'd heard of autism and you, as you said, you
thought that that would have been picked up at some
point earlier. But how did you feel when they suggested
(14:46):
it and it sounded right? Um? So, my my parents
actually joked about it. I think I had to wait,
like Memba, two or three weeks in between like my
last test, and my parents like called I think I'm
pretty sure they called the assessor like during that wait,
because I was like during that weight, I was getting
really hyper fixated on on like a systems, and I
would like start sending my mom like articles like well cook, look,
(15:07):
look I think I have this because of this, and
I would just keep it. I would just really it
was really clear that I was. It was all I
was focusing on and I was really I was getting
really stressed about like not hearing back from them. Yeah,
but when I when I did find out, when I
went in and she told me, Um, I think my
real initial reaction I was, Yeah, I was surprised, but
I was also but also not surprise at the same
(15:27):
time and looking in a really great way. Just yeah,
just like just kind of looking back and um and
looking at myself currently um, and also knowing about autism
and just putting myself in it, putting myself in that
treat or anybody like me even. Yeah, it started to
make sense when I started to like think of it
more and like a in the whole point of view.
And then also, um, I felt I felt we leave too.
(15:48):
I felt like, yeah, just the fact that the did
started things started making sense and it wasn't just like oh,
I'm just like this person that that's just never gonna
fit in kind of thing, or just like my feelings
started to make more sense and I knew that there
are a lot of people out there like me. I
felt more at peace because of that, but I was
also yeah, I kind of went through a lot of
like stages of grief too, because I was also I
think I was also angry and upset and yeah, I'm
(16:12):
trying to go back in time and stuff. Because I
also felt like I felt kind of reasonful about like
all the times about the different points in my childhood
where I wish I knew. Yeah, I started to build
to kind of go through the stages of grief about
like what I missed out on, if I missed out
on anything, But I felt a lot, yeah, if I
just knew. Yeah, did you have a sense of how
(16:32):
your parents felt? Obviously they were supportive of view, But
how did they react to it? Yeah, they were almost
the same way, like they were surprised, but like when
I was, like when I was enduring that waiting time,
when I was sending the Marvels articles, they were realizing
that it wasn't like the most surprising thing. But yeah,
they you know they felt bad is that if they
didn't they didn't know, Um they didn't know before. Yeah,
(16:54):
And I think they just trusted that I was still
continue to be the same person, just with no one
that I might need additional sometimes. And if you were
advising parents, who whose children were who were receiving this information,
not not when the child is two or three, when
they're too little to understand their parents' reaction. But is
there anything you'd recommend for them to do or not
(17:16):
to do? I mean once they've learned the diagnosis. Yeah,
Um so I think there are two things. One one
I think is really important for parents to not withhold
that from your child, to not withhold that gnosis from
their child. Um. I actually had a lot of parents
think like, after after like knowing everything I've been through,
after knowing the kind of person I am now, and
(17:38):
after knowing, um, yeah, that I'm autistic, they would go like, oh,
from based on yeah, just based on like you and
how you're doing Kayla, and how you're how are you
doing well? I think I'm not going to tell my
child that they have dyslexia, they have ADHD, they have autism,
because because you didn't know, only turned out fine, and
I kept telling them. I don't think that's why I
turned out fine. I think I turned out ultimately fine
despite of that, not because of that. I think it
(18:00):
by when you don't have a diagnosis, or you don't
know you're a diagnosed, you start calling yourself other things,
and other people start calling your other things too, awkward, lazy,
just all these other adjectives come in that it would
just it would just take out a lot of stress
and a lot of internal angst for young children just
to know that they're still themselves and they're they're not lazy,
(18:22):
they're not like anything that's just like the static condition.
But also at the same time, I don't think that
parents maybe it might not be good to show like
the immediate initial reaction to the child. I mean, of
course any parent, like even even me, I'd be really
concerned about my child's future and what that means for
us of the family and specifically my child growing up.
(18:42):
And I think having the two days a couple of
weeks or so the process as as a family, as
even on your own would probably be better esctually for
a young child. And then and then kind of sit
down at the child and tell them of the doctor said, yes,
make sure to tell that child that they're still they're
still value, they're still loves, there's still whatever kind of
(19:03):
person they were before, if they were still if they're
creative or they're really hard working, make sure that they're
still themselves. Basically make sure that they know that. But
just sometimes they might yeah, they might min the situations
where they might need some extra help with communicating and processing,
and then the parents will be here o, the specialles
will be there to help them however they want to
be the best they can be. That's really really helpful.
(19:26):
So what was the treatment, I mean, what kind of
help were you able to get and did it make
an immediate difference? Sure? I think the most obvious was school.
When I was in college, and of course in grade
school too, I didn't have any extra time on tests.
And when I went to Oxford for my master's degree,
I actually went to disability Services and showed them by
(19:47):
diagnosis and told them I was autistic because it was
actually the assessor put at the end of my assessment
at the paper diagnosis that they recommended since they knew
I was going to grad school, that I recommended I
I seek any any additional combinations available, basically that I
should have support, And all of a sudden, I was
just I was so shocked at like just how of
(20:09):
how much better it was because I really needed them
extra time to submit essays. Um I had a note taker,
which I didn't like. It was just ended up being
like just like this whole beneficial thing I was just
significantly less internally chaotic and basically and then the peak
of our class was going on during the peak of COVID,
and I was very stressed and I was definitely flaring
(20:31):
up with anxiety. I think because of just everything going
on in the world. Meeting so far away from home
and all of that really helps. And a lot of
it started becoming available to a lot of other to
every student too, like extra time on essays and stuff.
I think it helped all of the people that might
that might have started having anxiety flares for the first
time at Oxford. We're also being able to be able
(20:52):
to get help too, And I think that it was
just it was so beneficial. Oh that's that's really that's
really good to hear. We'll be right back after these messages.
Welcome back to the show. I want to turn now
to your wonderful book, Apartistic, this young adult book which
helps others understand the depth and the breath of autism spectrum,
(21:14):
because several of the characters in the book I have
autism disorder. So can you talk first about what prompted
you to write this book. I know that you've always
liked to write, but what prompted you to write this
particular book. So, yeah, I always like to just write
basically in general, like you're saying. But I stopped reading
actually from after like we had to read in high school,
I stopped reading. And so yeah, maybe I was like
(21:35):
twenty four. So I started picking up reading for fun
again and and like once I started doing that, I
started I started over criticizing books in my head, just going, oh,
why can't my something like that, like, oh, even I
could do that kind of thing. And then I just
started I just realized I needed to actually sit down,
reminte the book if I wanted to keep like talking
with that, like you were, just to myself. And so
(21:58):
just the more I read, the more I realize that
the few books about autism, there was nothing. It was
absolutely nothing about a black autistic girl. It's me, that
was it was. It was fred of strange. So I
just realized that that's what I wanted to say, That's
what I wanted to write about in that particular way.
I think I've said this before that I've heard from
many parents who have autistic children that when you know
(22:20):
an autistic child, you know an autistic child. I mean,
it's it's tempting but wrong to sort of assume that
one person's experience with autism is going to be the
same as others. And in this book you really drive
that point home in that you bring together many characters
who have different types of autism. I mean, was it
important to you too as you came up with the concept.
(22:42):
Was that a story that you really wanted to tell um?
Yes and no at the same time. Actually, so, when
I just came up with the overall concept and characters,
I made it more like had a family focused at first,
But then when I started writing the plot was yeah,
it was going better start kissing on school. So it
was a lot easier for me to introduce other autos
(23:03):
of characters. And I felt really really passionate about making
sure it wasn't just like the typical character to see
in the media. It wasn't just like the completely computer genius,
or like the loaner, or just like the non speaking
person that people cast aside. Basically, I want I wanted
to make sure that, like if there's a non speaking
(23:23):
person like for example, Noah's brother, that they weren't cast aside.
Their personality was coming out like everyone had a personality.
Everybody had a unique strength of weakness, every single person
in the book, and I wanted all of that to
be highlighted and celebrated. Yeah, and you did such a
good job there, So you know, we talked about this
a little earlier about you not having diverse school experiences
(23:44):
growing up, and in the book, Noah talked about feeling
left out and alone and non black because of our autism.
She thought everybody saw her as the quote weird kid
and quote versus the black kid. I mean, did her
experience come at all from your own experience? I mean,
did you feel that way when you were growing up? Yeah,
that was definitely a yes and no answer as well. Yes, yes,
(24:08):
definitely in hindsight. But honestly, I never I never thought
to express myself like it, just to express it like
that at all, not even to like myself. I didn't
have that kind of freezing at the time, And it
didn't actually that it's those kind of lines that that
Noah was thinking didn't come out un tool I was
till I wrote it in visibly. Yeah, if I was
intentional about being as introspective as Noah, as Noah as
(24:29):
I definitely I'm sure that I would have had voice
of all that's I would imagine that once you got
your diagnosis and understood that you were not alone, you
weren't alone in the black community, I did that change.
Was it fair to say that you became more identified
I mean racially or does that not really a thing
for you? Um? I feel like it's I've been a
lot more confident. But I feel like it's just more Yeah,
(24:51):
just more of a self esteem thing, more than more
than it's more my internal thoughts changing instead of like
it's not necessarily I can't really say for sure that
it's my there's my external circumstances changing. I just think
it's more about, like I personally know there's one, there's
more than one way to be a black person who's
more prisibly, it's just I just need to be myself myself,
(25:11):
like who I am self, like your other people are
life like that. Yeah. There was another point about the
book that I really struck home for me. In the
character knows parents didn't believe in therapy, and she says
in the course of the book that my mom's weirded
out by it. It's not a thing in our culture
that actually hit home for me because I had a
brother who ultimately got a diagnosis with a mental health
(25:34):
issue in much later life, in his forties, but as
he was growing up, there were lots of clues in retrospect,
and my parents were of the generation were similarly they
didn't trust the concept of therapy. Clearly, you've benefited from it,
and thankfully the stigma about it seems to be going away.
But did you experience this perspective over time at any
(25:54):
point in your life in real life? I think I actually,
even myself, I had a stigma about going to therapy.
I felt like that was that showed that I needed
more help than I just felt like I thought I needed.
I guess UM when when I was when I was
in my early twenties specifically, which is really unfortunate, as
somebody who was studdings like all of being and everything,
(26:15):
and my parents they were UM. I actually went to UM.
I was a really elite athlete when I was in
high school actually, and I was. My parents actually referred
me to a sports psychologist. Actually, I'm sorry to interrupt
you just one second. You were an elite athlete. What
did you What was your sports? Oh? Yeah, I ran track.
I was I was good at the four hundredneer specifically,
like I was like a multi time like state champion,
and so I went to the university I did actually
(26:37):
on a scholarship because it is a track scholarships. Actually, wow,
that's interesting they referred to to a sport. Yeah, because
I think, yeah, just just get help with like just
like general like what that was just sports anxiety basically,
and if I just got like, yeah, if I just
was able to kind of take my nerves and stuff, yeah,
that they wasn't helpful to me. Um. I think that's
why I also therapy ever since, because I mean she
(27:00):
used to like eat during our sessions. One time my
bat out told her I felt suicidal and she was
just like, oh, a lot of people feel like that.
So it was just a lot. Oh yeah, I just
didn't really feel like I think even into my yeah,
into my mid twenties, I didn't really didn't really associate
all there was to be good basically, So I was
really reluctant to like be yeah, using copayments to go
(27:22):
to therapy after my parents are the fact that they
referred me to somebody in the first place when I
was a teenager. I think that they were like they
were probably reluctant too, but I think they didn't have
like an overall stigma as a lot of people I know,
especially in the black community. When I wrote about Noah's mom,
I was envisioning um, actually if I had a future
daughter for example, for example, like my husband is from
(27:45):
he's um from Nigeria. I'm obviously I'm African American, and
so it's just like the cultural differences between having a
mom originally from from West Africa and I just know
those a lot of stigma about mental health, mental healthcaring,
and staff research there. I researched in Nigeria specifically, and
also within the Christian community too. So I want to
(28:06):
just yeah, it's a reference that just kind of like
back and forth between parents. Yeah, no, you know that
makes sense. I just want to positive for a second
to say, your comment about what the sports psychologists said
reminds me that I know that parents still can be reluctant.
I mean it makes sense if your child is young,
you know, you just there's a lot of reasons why
(28:27):
you would have reluctance, which I see very clearly. The
benefits of therapy. I definitely promote it However, once you
decide to cross that line and seek therapy, you have
to find someone who is good. There is such a
thing as someone who is not good. I mean the
sports psychologists responding to you with like, oh, everybody feels
that way, that's an example of bad therapy. So the
(28:50):
good thing is that, I mean, I know instances where
bad therapy has dissuaded people from the whole practice. I mean,
and it's it's difficult. You're in one on one situation
and someone says things to you that don't sound right.
It's hard to know to trust again. But I just
wanted to stop and say that the good thing that
you did and that other people should do is just
keep going with somebody else, certainly not with the same person,
(29:11):
but with somebody else exactly, because it'd be thera begin
be helpful, but not when it's not right. So now,
in your book, there's a lot of adults who are
some of whom are understanding, and they're knowledgeable, and they're
really helpful with the autistic characters in the book. They
there's I'm not going to give too much away. I mean,
(29:31):
this is a young adult book, but I read it
like I was reading a book for myself. It was
I found it very entertaining, So I don't want to
give anything away because I want everyone to read it.
But there are lots of adults that help a lot
of the students that are artistic, but there's some that
don't at all. I mean, they really get a mixed
bag of adult behavior. Was that born of things you
had seen while in school or was it just easy
(29:52):
to imagine how people could be helpful and not helpful.
I did want to show examples of adult figures you
could have, like both the positive and negative influence on
someone like Noah specifically, especially Somebody is really quiet, because
a lot of a lot of the books, specially in
the first half of the book, was her thoughts like
you just you would hear really short answers from her,
and the dialogue like no, yes, okay, paragraphs and paragras
(30:15):
w bus be like what it's what she's thinking? And
so how adults are navigating a quiet girl with a
lot of with the with the really beautiful personality and
a lot of inner thoughts going on. But I was
also really mindful that, like when I was putting in
these adult figures, I need to make sense with the book.
It's at younger of course, and I want to sense
(30:37):
that it made it was a good book for teenagers
to feel relatable to guys. Want to make sure various teachers,
in various support systems that she had were a mixture
of different ways that people would realistically respond to a
really quiet team basically, So, what do you think that
black parents in particular can learn about children with autism
(30:58):
from Afrotistic? So what do you want them to take
away from this book and what would you want them
to know from this book about raising an autistic child?
I Um, I definitely want parents to really experience like
kind of inner thoughts that or interactions that just a
girl like Noah could have, um like during school, like
(31:19):
when when the parents not there, but not just Noah,
but also also of us your brother Ray, with a
lot of other characters in the books. Um So just
like having more bit more and site, especially with like
the challenges specifically with black autistic children like no one Ray.
Um Like the the challenges that they would have to
overcome and all the strengths that they would have to
(31:39):
develop because of it, Like just in different hurdle generationally,
parents might not understand these days, and also just with
like neurodevelopmentally, just as like if you're if you're not autistic,
that you might not be able to consider before and
until reading about it. So I definitely hope that, yeah,
that they there's definitely various ways to thrive to learn
to love of Yeah, it's a struggle and as like
(32:01):
as a black autistic teen, and I hope that they
would kind of just understands all bit more. Now I
have to say that I would also highly recommend this
to everyone, independent of whether they have an autistic child
in their lives, because you describe so well Noah's reaction
to things, and every parent will see some aspect of
their child in some of the reactions and the compassion
(32:24):
with which you write about how she goes through life
and she is acknowledging that some of the things that
she does are going to make her different from the
other people, and her struggle with but confidence about them.
It's really it's not just for parents who have autism
in their family. It's really it's really it gives everyone
insight on just the wonderful world of young people and
(32:46):
what they're thinking. So thank you so much for writing this.
I enjoyed it, and I want everyone listening to read it,
even even if you don't have any young adults. Definitely
worth reading. And one of the things, just just to
wrap this up, one of the things that you said
earlier in this conversation, which really comes clearly through the book,
and that is the important thing if you have this diagnosis,
(33:08):
is to let the child know they're still themselves. I mean,
what comes through clearly is that Noah is a thoughtful, creative,
really smart with respective robotics and AI. I mean, she
has real skill set and it just the diagnosis seemed
to bring more clarity to how her brain worked, but
certainly not her whole self. It was just a part
(33:30):
of her that she learned to cope with. So I
thank you again and I'm going to wrap it up here.
But before we go, first of all, I want to
say thank you, thank you for talking to me about this,
thank you for the book. I would really love for
you to do one last thing, and that is to
play a mini version of the GCP Lightning Round. I'll
only ask you the first two questions because the other
(33:51):
two questions are parenting questions. But the first question is
what's your favorite poem or saying, I so my answer
to that would actually be a Bible verse. It would
be Philippians or thirteen, okay, which is I cannot do
all things through price too. Strength is me. It's my
It's just like what I really like kind of say
to myself. And I'm what I'm having a new kind
(34:12):
of study. That's great. Give me the site again, the
actual site of the passage Philippians four thirteen. Great. And
then finally, your favorite two children's books that you're allowed
to include your own as one of them, books that
you loved reading or having read to you when you
were growing up. In our church, we have like this
mentorship program where we mentor like the children in our church.
(34:35):
I'm actually I'm actually the one of the one of
the some of these school teachers. And my mentie um
I gave her this middle grade book and so she
actlualely loved it. The book is called The Woman and
Science Fifty Fearless Pioneers who changed the world. Do you
really like that book? Were shout out my book? And
then too, all the children in my church like that
my book too is as well. And then and then
(34:58):
also also when I was growing up by lights. Absolutely
anything by Doctor SEUs. I love books that mine. I
like to patro books time. Oh yes, me too. I
still have the Doctor SEUs books that I grew up with.
So Kayla, I thank you so much. I thank your
mom as well for introducing the two of us. And
just as a quick aside, I haven't mentioned this at all,
(35:18):
but Kayla also has this other world of tech and
her husband's doing these amazing things in computer science. So
there's it's like a whole other chapter to this family.
That's pretty amazing. And I'm sure we'll be hearing about
that in another podcast, but for now, thank you for
joining this parenting podcast, and thank you so much for
being with us today. And I can't wait to read
(35:38):
the next book. Thank you, thank you very much, thanks
for having me. I hope everyone listening enjoyed this conversation
and that you'll come back for more. Please rate, review,
and subscribe wherever you listen to podcasts and tell your friends.
For more parenting info and advice, please check out the
ground Control Parenting blog at ground control parenting dot com.
You can also find us on Instagram and Facebook at
(36:01):
ground control Parenting and on LinkedIn under Carol Sutton Lewis
The ground control. Parenting with Carol Sutton Lewis podcast is
a part of the Seneca Women Podcast Network in partnership
with iHeartMedia. Until the next time, take care and thanks
for listening.
Hello, and welcome to Ground Control Parenting, a blog and
now a podcast created for parents raising black and brown children.
I'm the creator and your host, Carol Sutton Lewis. In
this podcast series, I talk with some really interesting people
about the job and the joy of parenting. Today, I
am thrilled to welcome Kayla Allen Omesa to the podcast.
She's a co founder of a fintech company and the
(00:27):
author of Afortistic, a wonderful book for young adults. Afortistic
tells the story of fifteen year old Noah and her
efforts to navigate high school, adolescence and autism. Kayla knows
quite a bit about autism, having worked on various research
projects on autism, psychology, and mental health at Harvard Duke
and as a US Fulbright scholar in Nigeria, and because
(00:47):
she was diagnosed with autism spectrum disorder at twenty four
years old. She is an avid mental health services volunteer
and mentor. She's a graduate of Miami University and the
University of Oxford. An American citizen, she lives in Oxford
with her husband Daniel. Welcome to Ground Control Parenting, Kayla. Oh,
thank you very much, Farel. I'm happy to be here.
Up until now, I've been talking with parents about various
(01:08):
aspects of the job of parenting black and brown children.
But I'm so happy to have you here today to
give us the different and really important perspective of how
you were parented, particularly through your autism diagnosis. I'm excited
to talk with you today about your book, your mental
health work, and your thoughts about what parents might want
to know about supporting autistic children. So let's get started. Okay,
(01:31):
So first, Kayla, tell me about where you grew up
your siblings. Where was home for you? Sure? So the
short answers to that is that I grew up in
a town outside of Buffalo, New York. But I actually
it moved to that town until I was about twelve
going on thirteen. My dad was a military officer actually,
so we moved around a lot when I was really young.
(01:53):
I think most missinaib we were living in Japan for
six years from when I was six to twelve. So, um,
so I was nine and then and then I'm min Okanala,
JAPANI until I was all before moving to the saber AffA, Gaffonia. Wow.
Oh yes, I have two siblings. Um, I have a
younger brother and the younger sister. Wow, that's great. So
(02:14):
it's really interesting that you received your autism diagnosis when
you were twenty four. But you've said that there were
ways you felt or emotions that you experienced while you're
growing up which could have given some clues to your neurodiversity.
Can you talk about the times in your childhood and
I imagine it may have been exacerbated by having to
move around a lot, but when you felt that you
(02:36):
were sort of walking a different path from your siblings
or your friends when I was, especially when when we
were in Japan before that hard to differentially, especially in hindsight,
but I did feel like I was skimming a lot
when I was when I was a kid specifically, and
my parents sorry you said skimming, Yes, so actually s
(02:58):
T I am m im g sou stimming. They have
like these stimming behaviors some people do to help you
kind of cope on when you're overstimulated, for example, And
I think that probably a really common phenomenon with that
is I kind of flapping your hands walking back and forth,
um um, like kind of picking my skin around your nails.
(03:20):
And I've done all them almost my entire life, and
so I was definitely doing that. Were they self soothing
where they designed to make you feel better? Yes, yes,
um I didn't know that the time, but honestly, I
would usually do that when I was already stressed actually
so um So for a while, I actually thought I
was doing it because yeah, because I was stressed, I
(03:41):
was making me more stressed. But later I realized I
was doing it. It was actually the people better I.
When I was growing up, I just realized my brother
and sister they were making friends and keeping friends, and
I just I felt like I wasn't doing that as
well as as they were. And they were younger than
me too, So I just felt like I should have
been like kind of the role model, and that's what's
what shouldn't. I was just really surprised that I wasn't.
(04:02):
And then yeah, I also had especially when I was
in middle school, I would have like this, really it's
really dangerous in behavior. I would no one, no one
ever saw me do this, but I would go to
a closet in my room and just like kind of
really lightly or sometimes even slightly slightly more aggressively, but
kind of bang my head against the wall because I
was just really overwhelmed by something, by just something that
(04:24):
happened in school day and never just do that for
like thirty minute of a time when I was specifically
in middle school, but I also on high school and
even when I came over college sometimes too. Yeah, I was.
I was always convinced I was adopted. For example, that
was just completely set that that was the case. Really
annoyed him. Here, Now we were adopted. We were, And
(04:45):
I never, never, one hundred percent went away until I
was twenty three when we all took good ancestry DNA
tests and just because I just out of curiosity out
for Christmas, and when I was able to find police
on the DNA test that my parents and my parents
and my siblings or my siblings, that's when I stopped
bringing it up. Wow, that is that is a really
(05:06):
good use of that science. I'm sorry it took so
long for it to come out for you to feel
that way, but so well, how are you able or
were you able to share the way that you felt
with your siblings and your parents. I mean, they could
see you doing some of these stimming I mean, I'm
so sorry to hear about the banging, but maybe they
could see a bruise on your head. I mean they
(05:27):
could see some evidence of this, And how did you
share it with them? Or did they know what was
going on it? To be fair, I didn't really. I
wasn't the best communicator when I was young, but I did.
I would. I would come home for school really angry
or really stressed. My parents even told me just it
was looking back, that it just seemed like I was
just being Yeah, I was just being a teenager. You
(05:48):
just upset about something. Yeah, when like they adopted the
situation came up, for example, they just thought I was
still being a teenager and just still just not really
trying to find my place in the world. So I
did feel like I was different. My parents could see
some some signs of like for example, just they would
recall like when I was especially a teenager, I would
seem kind of more spaced out than my peers were
(06:10):
were it kind of blend in a little bit more
when I as a child, but especially when I was
a teenager, I was still doing that a little bit
more than aybody else, or a lot more than everybody else.
But I think, like taking all lot together, even when
I would express that I wasn't really feeling well, and
I didn't. I didn't feel like I've been in I
feel like I was adopted. I think that was just
me basically. Yeah, I was just a teenager and I
(06:31):
was just my personality. So I know it's tough in hindsight,
but I know that parents listening would be really interested
in hearing. Is there anything that you now looking back
think that perhaps your parents might have been able to
be more helpful when you were younger? I mean, are
there things that you now knowing what you now know
(06:52):
about how you were feeling? Right? Is there anything you
wish they would have known or done something differently? Yeah,
assuming that like ass of awareness and a lot of
mental health awareness wasn't still wasn't in their radar. Basically,
I would wish, yeah, my parents would just sit me
down and ask more. They would have asked more why
my why, questions like why do you feel this way?
(07:13):
You just yeah, you just had this really good grade
in our test. Why why are you feeling like, yeah,
you don't belong here? Why are you feeling like you
don't belong in your own family, your your in your school.
I wish they were a lot more and why questions.
Of course, I don't know how I would have responded,
especially to my parents if Yeah, but I felt like
a chance even for myself to just just to think about,
(07:34):
like why I was hurting. Yeah, just even for that,
just for that use case specifically, just to kind of
introspect a little bit would have been really helpful. H
So you mentioned that you mentioned school and that even
if you did well in school, said if it wasn't
sort of calming, so generally calming. How was school for
you when you were young? I mean, you clearly have
(07:54):
been a high achiever sort of Oxford. You've done all
this great research. You've said that it didn't start out that.
I mean, how was school for you in the early years.
I always say that I was very woefully averaging for
most of I was. I wasn't really winning any academic
awards or anything. I wouldn't like I would always go
above and beyond for any creative writing tasks. But of
(08:16):
course that usually that that stopped being taught or implemented
in the school school productor I was like passing middle school.
I think, yeah, I didn't really do all that well.
I can't say I was terrible, but I wasn't. I
graduated from high school and the bottom half of my class,
so just for reference, I was probably in the I
think I was in the top end of the bottom half,
but like there was thought it was still the bottom half. Um,
(08:37):
And I felt like I really worked hard too, so
I felt like I was very woefully average. But then,
I mean, but then something happened. So what happened? So
so when I went to when I went to the university,
actually I majored in psychology, so I wasn't so like again,
I wasn't like this terrible person in high school. But like,
for example, I took any piece psychology with class, and
(08:59):
I did, I did decent eye and I got like
a like a D plus or something, and I just
really I liked it too, And I think I did
really well because I really, I really enjoyed one this morning.
I really liked the neuro science like topics that we're
talking about specifically, So I just like on a whim,
decided it's a major. And in college I wanted to
parents psychology and minor and neuroal science ideally, And the
more I got into those classes is the absolutely better
(09:21):
I did. I just four point thos, we're just coming
out of nowhere basically, and I yeah, Yeah, I graduated
with a pretty high GPA. I worked extremely hard on
like research projects that weren't that weren't necessary, Like I
just wanted to do it, and obviously it looked really
good to find to graduate school. So that's how I
was able to get a lot of the research opportunities
after I graduated it and eventually get into Oxford for
my master's program. Wow, so something clicked. Before I go
(09:44):
more into that, I wanted to ask you when you
were growing up, from beginning elementary school through middle school
of high school, did you go to school with a
lot of other black stuffs. I think going into high
school there was one one other black girl in my
grade and then another black boy in my grade, and
going into high school, I think when we graduated there
was about in my classified two pudding, they were about
(10:06):
three or four others at that point, so there it
was very low. Wow. So did that complicate your efforts
to fit in at all? Yes, I would say so.
I think, especially as a black girl, I think I
had a lot of stereotypes against me that didn't work
in my favor. That I had to overcome basically and
a lot of like just typical high school experiences. I
(10:29):
felt like I wasn't I was kind of like left
out on like I felt like no one was interested
in like going on a date with me, you're going
to dance with me for anything, And even if I
was more social m I felt like that was just
not just not a thing for the black girl's heart
whatever reason, and it was, Yeah, it was just unfortunate.
So yeah, yes, I felt like that was an issue.
But it was always the case when I was growing
up because I've lived in Japan too, so I never
(10:51):
really thought like, oh, I'm different because of racism or
because of because maybe I'm out to stick or think
I never really crossed my mind. It was just like, oh,
I'm just this black girl navigating while just being plopped
into like another culture basically, and I need to navigate
that I'll came back it definitely it made it impossible
almost for a lot of people to see that it
was another underlying condition going on. So m okay. So
(11:13):
another question about college, was it easier for you socially
as well? Or was it just great to dive right
into the book so it didn't matter as much. Right,
it was. No, I was absolutely not easier me socially.
I think it's unfortunate and my experience in college. Luckily
it wasn't the case after college, but in my sparents
of college, I felt like there was this one way
(11:34):
to be black, and like, at least with the people
that I was, that I knew, and I was not
that one way. It was funny at first and I
would be like, oh, sorry, I don't know how to
place space. I grew up with my people could think,
and they they were just laugh of stuff. Like those
kind of instances just kept coming up and coming up
and coming up. So it just like it became extremely
hard to fit in even with among the other other
(11:56):
black individuals. Yeah, yeah, now that makes that makes sense.
So us forward through the college and you are you
found this whole area of research was exciting, You're excelling
in it, and then you finally were able to get
to the autism diagnosis? What led to it? What prompted
you to discover this? Right? So, um yeah, I was
(12:17):
working at a Duke at the time and the Brain
Imaging Analysis Center, and um I was I was just
having mental health issues, but I was also having like
a really bad following out with friends at the same time,
which is like exacerbated all my health. I got into
the fork right I got into Oxford is like almost
like two months later, the doctors knew why I was.
I was going in and out of like impatience. It's
(12:38):
like it's like he as for units because I was
really not hoping well. So I went to doctor trying
to pendlet everything was fine. I was like, I just
need you to sign off on this that I need
to go and I'm going to go and work in
Nigeria by myself for nine months here. And You're like, no,
you need to I'm not going to sign this until
you go to individual therapy once a week and a
group therapy once a week or six months at least,
(12:58):
and then once you lets you have some positions telling
like noting that you're progressing and like knowing that you're
a little that you have a little more hoping skills
to be in another country by yourself, and then I'll
sign off. So I did that. So that was just
basically my motivation to kind of get more structural help,
not just kind of on and off help. And so
I did that and one of my individual therapy sessions.
(13:21):
They were m Yeah, there was definitely some even I
knew too. There were definitely some like clusters that of
symptoms that could really easily fit like a DSM diagnosis.
So she were just trying to see what other underlying
condition it was. I mean, I just mentioned to her that, like,
I just don't I never wear jeans, for example, I
(13:41):
don't really I tried to when I was in high school,
for example, and I just it was it was the
worst thing ever, So I haven't more genes earning. That's
too tight on me. And then she when she asked
a little bit more questions about her, she realized, I'm
really eversinating us too bright, too loud. Yeah, she and
I agree, but maybe it makes sense to return me
to an autism assessor just the same. And actually the
(14:02):
more I was explaining my symptoms, the more I believe
actually I could be but I'm pointing a sure and
because and it also seemed like too big of a
thing for me that for it to be missed, and
for ever work, I wasn't all it wasn't alboisure either.
So when I did I did the assessment, it was
two weeks total, but like it was two sessions that
were about like three hours each. I think it was
really it was really intense, and yeah, they came out like, yeah,
(14:25):
that I was autistic, and then I was awful. I
as anxiety too, Yeah I was. I was surprised actually
about yeah. Yeah, well that that that leads to my
next question. So give me all of the different ways
that you must have reacted to this. I mean, because
you'd heard of autism and you, as you said, you
thought that that would have been picked up at some
point earlier. But how did you feel when they suggested
(14:46):
it and it sounded right? Um? So, my my parents
actually joked about it. I think I had to wait,
like Memba, two or three weeks in between like my
last test, and my parents like called I think I'm
pretty sure they called the assessor like during that wait,
because I was like during that weight, I was getting
really hyper fixated on on like a systems, and I
would like start sending my mom like articles like well cook, look,
(15:07):
look I think I have this because of this, and
I would just keep it. I would just really it
was really clear that I was. It was all I
was focusing on and I was really I was getting
really stressed about like not hearing back from them. Yeah,
but when I when I did find out, when I
went in and she told me, Um, I think my
real initial reaction I was, Yeah, I was surprised, but
I was also but also not surprise at the same
(15:27):
time and looking in a really great way. Just yeah,
just like just kind of looking back and um and
looking at myself currently um, and also knowing about autism
and just putting myself in it, putting myself in that
treat or anybody like me even. Yeah, it started to
make sense when I started to like think of it
more and like a in the whole point of view.
And then also, um, I felt I felt we leave too.
(15:48):
I felt like, yeah, just the fact that the did
started things started making sense and it wasn't just like oh,
I'm just like this person that that's just never gonna
fit in kind of thing, or just like my feelings
started to make more sense and I knew that there
are a lot of people out there like me. I
felt more at peace because of that, but I was
also yeah, I kind of went through a lot of
like stages of grief too, because I was also I
think I was also angry and upset and yeah, I'm
(16:12):
trying to go back in time and stuff. Because I
also felt like I felt kind of reasonful about like
all the times about the different points in my childhood
where I wish I knew. Yeah, I started to build
to kind of go through the stages of grief about
like what I missed out on, if I missed out
on anything, But I felt a lot, yeah, if I
just knew. Yeah, did you have a sense of how
(16:32):
your parents felt? Obviously they were supportive of view, But
how did they react to it? Yeah, they were almost
the same way, like they were surprised, but like when
I was, like when I was enduring that waiting time,
when I was sending the Marvels articles, they were realizing
that it wasn't like the most surprising thing. But yeah,
they you know they felt bad is that if they
didn't they didn't know, Um they didn't know before. Yeah,
(16:54):
And I think they just trusted that I was still
continue to be the same person, just with no one
that I might need additional sometimes. And if you were
advising parents, who whose children were who were receiving this information,
not not when the child is two or three, when
they're too little to understand their parents' reaction. But is
there anything you'd recommend for them to do or not
(17:16):
to do? I mean once they've learned the diagnosis. Yeah,
Um so I think there are two things. One one
I think is really important for parents to not withhold
that from your child, to not withhold that gnosis from
their child. Um. I actually had a lot of parents
think like, after after like knowing everything I've been through,
after knowing the kind of person I am now, and
(17:38):
after knowing, um, yeah, that I'm autistic, they would go like, oh,
from based on yeah, just based on like you and
how you're doing Kayla, and how you're how are you
doing well? I think I'm not going to tell my
child that they have dyslexia, they have ADHD, they have autism,
because because you didn't know, only turned out fine, and
I kept telling them. I don't think that's why I
turned out fine. I think I turned out ultimately fine
despite of that, not because of that. I think it
(18:00):
by when you don't have a diagnosis, or you don't
know you're a diagnosed, you start calling yourself other things,
and other people start calling your other things too, awkward, lazy,
just all these other adjectives come in that it would
just it would just take out a lot of stress
and a lot of internal angst for young children just
to know that they're still themselves and they're they're not lazy,
(18:22):
they're not like anything that's just like the static condition.
But also at the same time, I don't think that
parents maybe it might not be good to show like
the immediate initial reaction to the child. I mean, of
course any parent, like even even me, I'd be really
concerned about my child's future and what that means for
us of the family and specifically my child growing up.
(18:42):
And I think having the two days a couple of
weeks or so the process as as a family, as
even on your own would probably be better esctually for
a young child. And then and then kind of sit
down at the child and tell them of the doctor said, yes,
make sure to tell that child that they're still they're
still value, they're still loves, there's still whatever kind of
(19:03):
person they were before, if they were still if they're
creative or they're really hard working, make sure that they're
still themselves. Basically make sure that they know that. But
just sometimes they might yeah, they might min the situations
where they might need some extra help with communicating and processing,
and then the parents will be here o, the specialles
will be there to help them however they want to
be the best they can be. That's really really helpful.
(19:26):
So what was the treatment, I mean, what kind of
help were you able to get and did it make
an immediate difference? Sure? I think the most obvious was school.
When I was in college, and of course in grade
school too, I didn't have any extra time on tests.
And when I went to Oxford for my master's degree,
I actually went to disability Services and showed them by
(19:47):
diagnosis and told them I was autistic because it was
actually the assessor put at the end of my assessment
at the paper diagnosis that they recommended since they knew
I was going to grad school, that I recommended I
I seek any any additional combinations available, basically that I
should have support, And all of a sudden, I was
just I was so shocked at like just how of
(20:09):
how much better it was because I really needed them
extra time to submit essays. Um I had a note taker,
which I didn't like. It was just ended up being
like just like this whole beneficial thing I was just
significantly less internally chaotic and basically and then the peak
of our class was going on during the peak of COVID,
and I was very stressed and I was definitely flaring
(20:31):
up with anxiety. I think because of just everything going
on in the world. Meeting so far away from home
and all of that really helps. And a lot of
it started becoming available to a lot of other to
every student too, like extra time on essays and stuff.
I think it helped all of the people that might
that might have started having anxiety flares for the first
time at Oxford. We're also being able to be able
(20:52):
to get help too, And I think that it was
just it was so beneficial. Oh that's that's really that's
really good to hear. We'll be right back after these messages.
Welcome back to the show. I want to turn now
to your wonderful book, Apartistic, this young adult book which
helps others understand the depth and the breath of autism spectrum,
(21:14):
because several of the characters in the book I have
autism disorder. So can you talk first about what prompted
you to write this book. I know that you've always
liked to write, but what prompted you to write this
particular book. So, yeah, I always like to just write
basically in general, like you're saying. But I stopped reading
actually from after like we had to read in high school,
I stopped reading. And so yeah, maybe I was like
(21:35):
twenty four. So I started picking up reading for fun
again and and like once I started doing that, I
started I started over criticizing books in my head, just going, oh,
why can't my something like that, like, oh, even I
could do that kind of thing. And then I just
started I just realized I needed to actually sit down,
reminte the book if I wanted to keep like talking
with that, like you were, just to myself. And so
(21:58):
just the more I read, the more I realize that
the few books about autism, there was nothing. It was
absolutely nothing about a black autistic girl. It's me, that
was it was. It was fred of strange. So I
just realized that that's what I wanted to say, That's
what I wanted to write about in that particular way.
I think I've said this before that I've heard from
many parents who have autistic children that when you know
(22:20):
an autistic child, you know an autistic child. I mean,
it's it's tempting but wrong to sort of assume that
one person's experience with autism is going to be the
same as others. And in this book you really drive
that point home in that you bring together many characters
who have different types of autism. I mean, was it
important to you too as you came up with the concept.
(22:42):
Was that a story that you really wanted to tell um?
Yes and no at the same time. Actually, so, when
I just came up with the overall concept and characters,
I made it more like had a family focused at first,
But then when I started writing the plot was yeah,
it was going better start kissing on school. So it
was a lot easier for me to introduce other autos
(23:03):
of characters. And I felt really really passionate about making
sure it wasn't just like the typical character to see
in the media. It wasn't just like the completely computer genius,
or like the loaner, or just like the non speaking
person that people cast aside. Basically, I want I wanted
to make sure that, like if there's a non speaking
(23:23):
person like for example, Noah's brother, that they weren't cast aside.
Their personality was coming out like everyone had a personality.
Everybody had a unique strength of weakness, every single person
in the book, and I wanted all of that to
be highlighted and celebrated. Yeah, and you did such a
good job there, So you know, we talked about this
a little earlier about you not having diverse school experiences
(23:44):
growing up, and in the book, Noah talked about feeling
left out and alone and non black because of our autism.
She thought everybody saw her as the quote weird kid
and quote versus the black kid. I mean, did her
experience come at all from your own experience? I mean,
did you feel that way when you were growing up? Yeah,
that was definitely a yes and no answer as well. Yes, yes,
(24:08):
definitely in hindsight. But honestly, I never I never thought
to express myself like it, just to express it like
that at all, not even to like myself. I didn't
have that kind of freezing at the time, And it
didn't actually that it's those kind of lines that that
Noah was thinking didn't come out un tool I was
till I wrote it in visibly. Yeah, if I was
intentional about being as introspective as Noah, as Noah as
(24:29):
I definitely I'm sure that I would have had voice
of all that's I would imagine that once you got
your diagnosis and understood that you were not alone, you
weren't alone in the black community, I did that change.
Was it fair to say that you became more identified
I mean racially or does that not really a thing
for you? Um? I feel like it's I've been a
lot more confident. But I feel like it's just more Yeah,
(24:51):
just more of a self esteem thing, more than more
than it's more my internal thoughts changing instead of like
it's not necessarily I can't really say for sure that
it's my there's my external circumstances changing. I just think
it's more about, like I personally know there's one, there's
more than one way to be a black person who's
more prisibly, it's just I just need to be myself myself,
(25:11):
like who I am self, like your other people are
life like that. Yeah. There was another point about the
book that I really struck home for me. In the
character knows parents didn't believe in therapy, and she says
in the course of the book that my mom's weirded
out by it. It's not a thing in our culture
that actually hit home for me because I had a
brother who ultimately got a diagnosis with a mental health
(25:34):
issue in much later life, in his forties, but as
he was growing up, there were lots of clues in retrospect,
and my parents were of the generation were similarly they
didn't trust the concept of therapy. Clearly, you've benefited from it,
and thankfully the stigma about it seems to be going away.
But did you experience this perspective over time at any
(25:54):
point in your life in real life? I think I actually,
even myself, I had a stigma about going to therapy.
I felt like that was that showed that I needed
more help than I just felt like I thought I needed.
I guess UM when when I was when I was
in my early twenties specifically, which is really unfortunate, as
somebody who was studdings like all of being and everything,
(26:15):
and my parents they were UM. I actually went to UM.
I was a really elite athlete when I was in
high school actually, and I was. My parents actually referred
me to a sports psychologist. Actually, I'm sorry to interrupt
you just one second. You were an elite athlete. What
did you What was your sports? Oh? Yeah, I ran track.
I was I was good at the four hundredneer specifically,
like I was like a multi time like state champion,
and so I went to the university I did actually
(26:37):
on a scholarship because it is a track scholarships. Actually, wow,
that's interesting they referred to to a sport. Yeah, because
I think, yeah, just just get help with like just
like general like what that was just sports anxiety basically,
and if I just got like, yeah, if I just
was able to kind of take my nerves and stuff, yeah,
that they wasn't helpful to me. Um. I think that's
why I also therapy ever since, because I mean she
(27:00):
used to like eat during our sessions. One time my
bat out told her I felt suicidal and she was
just like, oh, a lot of people feel like that.
So it was just a lot. Oh yeah, I just
didn't really feel like I think even into my yeah,
into my mid twenties, I didn't really didn't really associate
all there was to be good basically, So I was
really reluctant to like be yeah, using copayments to go
(27:22):
to therapy after my parents are the fact that they
referred me to somebody in the first place when I
was a teenager. I think that they were like they
were probably reluctant too, but I think they didn't have
like an overall stigma as a lot of people I know,
especially in the black community. When I wrote about Noah's mom,
I was envisioning um, actually if I had a future
daughter for example, for example, like my husband is from
(27:45):
he's um from Nigeria. I'm obviously I'm African American, and
so it's just like the cultural differences between having a
mom originally from from West Africa and I just know
those a lot of stigma about mental health, mental healthcaring,
and staff research there. I researched in Nigeria specifically, and
also within the Christian community too. So I want to
(28:06):
just yeah, it's a reference that just kind of like
back and forth between parents. Yeah, no, you know that
makes sense. I just want to positive for a second
to say, your comment about what the sports psychologists said
reminds me that I know that parents still can be reluctant.
I mean it makes sense if your child is young,
you know, you just there's a lot of reasons why
(28:27):
you would have reluctance, which I see very clearly. The
benefits of therapy. I definitely promote it However, once you
decide to cross that line and seek therapy, you have
to find someone who is good. There is such a
thing as someone who is not good. I mean the
sports psychologists responding to you with like, oh, everybody feels
that way, that's an example of bad therapy. So the
(28:50):
good thing is that, I mean, I know instances where
bad therapy has dissuaded people from the whole practice. I mean,
and it's it's difficult. You're in one on one situation
and someone says things to you that don't sound right.
It's hard to know to trust again. But I just
wanted to stop and say that the good thing that
you did and that other people should do is just
keep going with somebody else, certainly not with the same person,
(29:11):
but with somebody else exactly, because it'd be thera begin
be helpful, but not when it's not right. So now,
in your book, there's a lot of adults who are
some of whom are understanding, and they're knowledgeable, and they're
really helpful with the autistic characters in the book. They
there's I'm not going to give too much away. I mean,
(29:31):
this is a young adult book, but I read it
like I was reading a book for myself. It was
I found it very entertaining, So I don't want to
give anything away because I want everyone to read it.
But there are lots of adults that help a lot
of the students that are artistic, but there's some that
don't at all. I mean, they really get a mixed
bag of adult behavior. Was that born of things you
had seen while in school or was it just easy
(29:52):
to imagine how people could be helpful and not helpful.
I did want to show examples of adult figures you
could have, like both the positive and negative influence on
someone like Noah specifically, especially Somebody is really quiet, because
a lot of a lot of the books, specially in
the first half of the book, was her thoughts like
you just you would hear really short answers from her,
and the dialogue like no, yes, okay, paragraphs and paragras
(30:15):
w bus be like what it's what she's thinking? And
so how adults are navigating a quiet girl with a
lot of with the with the really beautiful personality and
a lot of inner thoughts going on. But I was
also really mindful that, like when I was putting in
these adult figures, I need to make sense with the book.
It's at younger of course, and I want to sense
(30:37):
that it made it was a good book for teenagers
to feel relatable to guys. Want to make sure various teachers,
in various support systems that she had were a mixture
of different ways that people would realistically respond to a
really quiet team basically, So, what do you think that
black parents in particular can learn about children with autism
(30:58):
from Afrotistic? So what do you want them to take
away from this book and what would you want them
to know from this book about raising an autistic child?
I Um, I definitely want parents to really experience like
kind of inner thoughts that or interactions that just a
girl like Noah could have, um like during school, like
(31:19):
when when the parents not there, but not just Noah,
but also also of us your brother Ray, with a
lot of other characters in the books. Um So just
like having more bit more and site, especially with like
the challenges specifically with black autistic children like no one Ray.
Um Like the the challenges that they would have to
overcome and all the strengths that they would have to
(31:39):
develop because of it, Like just in different hurdle generationally,
parents might not understand these days, and also just with
like neurodevelopmentally, just as like if you're if you're not autistic,
that you might not be able to consider before and
until reading about it. So I definitely hope that, yeah,
that they there's definitely various ways to thrive to learn
to love of Yeah, it's a struggle and as like
(32:01):
as a black autistic teen, and I hope that they
would kind of just understands all bit more. Now I
have to say that I would also highly recommend this
to everyone, independent of whether they have an autistic child
in their lives, because you describe so well Noah's reaction
to things, and every parent will see some aspect of
their child in some of the reactions and the compassion
(32:24):
with which you write about how she goes through life
and she is acknowledging that some of the things that
she does are going to make her different from the
other people, and her struggle with but confidence about them.
It's really it's not just for parents who have autism
in their family. It's really it's really it gives everyone
insight on just the wonderful world of young people and
(32:46):
what they're thinking. So thank you so much for writing this.
I enjoyed it, and I want everyone listening to read it,
even even if you don't have any young adults. Definitely
worth reading. And one of the things, just just to
wrap this up, one of the things that you said
earlier in this conversation, which really comes clearly through the book,
and that is the important thing if you have this diagnosis,
(33:08):
is to let the child know they're still themselves. I mean,
what comes through clearly is that Noah is a thoughtful, creative,
really smart with respective robotics and AI. I mean, she
has real skill set and it just the diagnosis seemed
to bring more clarity to how her brain worked, but
certainly not her whole self. It was just a part
(33:30):
of her that she learned to cope with. So I
thank you again and I'm going to wrap it up here.
But before we go, first of all, I want to
say thank you, thank you for talking to me about this,
thank you for the book. I would really love for
you to do one last thing, and that is to
play a mini version of the GCP Lightning Round. I'll
only ask you the first two questions because the other
(33:51):
two questions are parenting questions. But the first question is
what's your favorite poem or saying, I so my answer
to that would actually be a Bible verse. It would
be Philippians or thirteen, okay, which is I cannot do
all things through price too. Strength is me. It's my
It's just like what I really like kind of say
to myself. And I'm what I'm having a new kind
(34:12):
of study. That's great. Give me the site again, the
actual site of the passage Philippians four thirteen. Great. And
then finally, your favorite two children's books that you're allowed
to include your own as one of them, books that
you loved reading or having read to you when you
were growing up. In our church, we have like this
mentorship program where we mentor like the children in our church.
(34:35):
I'm actually I'm actually the one of the one of
the some of these school teachers. And my mentie um
I gave her this middle grade book and so she
actlualely loved it. The book is called The Woman and
Science Fifty Fearless Pioneers who changed the world. Do you
really like that book? Were shout out my book? And
then too, all the children in my church like that
my book too is as well. And then and then
(34:58):
also also when I was growing up by lights. Absolutely
anything by Doctor SEUs. I love books that mine. I
like to patro books time. Oh yes, me too. I
still have the Doctor SEUs books that I grew up with.
So Kayla, I thank you so much. I thank your
mom as well for introducing the two of us. And
just as a quick aside, I haven't mentioned this at all,
(35:18):
but Kayla also has this other world of tech and
her husband's doing these amazing things in computer science. So
there's it's like a whole other chapter to this family.
That's pretty amazing. And I'm sure we'll be hearing about
that in another podcast, but for now, thank you for
joining this parenting podcast, and thank you so much for
being with us today. And I can't wait to read
(35:38):
the next book. Thank you, thank you very much, thanks
for having me. I hope everyone listening enjoyed this conversation
and that you'll come back for more. Please rate, review,
and subscribe wherever you listen to podcasts and tell your friends.
For more parenting info and advice, please check out the
ground Control Parenting blog at ground control parenting dot com.
You can also find us on Instagram and Facebook at
(36:01):
ground control Parenting and on LinkedIn under Carol Sutton Lewis
The ground control. Parenting with Carol Sutton Lewis podcast is
a part of the Seneca Women Podcast Network in partnership
with iHeartMedia. Until the next time, take care and thanks
for listening.
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