Episode 19: Autism in the Latino Community, Part 2. With Dr. Kristina Lopez & Arianne Garcia

This is part two of a two-part episode. Want to get caught up? Go back and listen to part one of Autism in the Latino Community.

Today, we’ll be talking how difficult it is to assess which state laws best serve Latino Autistic people, and why it may be better to acknowledge that all states have broken, inadequate systems. Period.

We’ll also be talking about the transition to adulthood. Topics include access to programs like FAFSA, why self-advocacy needs to be a part of children’s experience starting in junior high, and cultural norms within the Latino community that make the transition different.


Show Notes

Get $50 when you open an ABLE account with today’s sponsor, ABLE United.

Nominate Mom Autism Money for Best Personal Finance Content for Underserved Communities.

Visit Arianne’s Website.

Follow Arianne on Twitter.

StairwaytoSTEM.org – Website for Autistic youth transitioning to college where Arianne is an editorial board member.

Check out Kristina’s work out of Arizona State University.

Like Mom Autism Money on Facebook.

Full Episode Transcript

Joyce: Hey, friends. Welcome to Mom Autism Money. Today, we are going to be talking with Arianne Garcia and Dr. Kristina Lopez about autism in the Latino community. This is actually part two of a two-part conversation, so if you can go back and listen to last week’s episode first if you want to get all caught up with this episode.

We are so excited to share this episode with all of you. Before we do, we have one other quick favor to ask. Nominations for the Plutus awards are open. And the Plutus awards are an industry award ceremony for people who work in independent financial media, like Brynne and I.

We’d appreciate it a ton if you could nominate us for Best Personal Finance Content for Underserved Communities, and you can do that using the link down in the show notes today. Now that we’ve got that out of the way, let’s learn a little bit more about our guests, Arianne Garcia and Dr. Kristina Lopez.

Arianne Garcia is an autistic Chicana writer based in San Antonio, Texas. She was diagnosed at 25 with ADHD and Autism Spectrum Disorder. She writes about autism and other things on her website: www.arianneswork.com and you can follow her on Twitter @arianneswork.

Dr. Kristina Lopez, Ph.D., is an assistant professor at the Arizona State University School of Social Work. Dr. Lopez earned her B.A. and M.A. in psychology from California State University, Northridge. She earned her M.S.W. and M.S. in psychology, and her Ph.D. in social work and psychology, from the University of Michigan. Her research interests include family experiences raising children with autism, the development and implementation of culturally informed autism intervention for Latinx families, and ecological and socio-cultural perspectives of disparities in age of diagnosis and treatment access among underserved populations. A vital aspect of Dr. Lopez’s research is the integration of community resources to advance the design of culturally informed models of intervention that foster child outcomes.

So now that you know about our guests, let’s talk to Kristina and Arianne.

(whooshing sound)

Joyce: I want to, first of all, thank you for accepting the invite. I seriously, that made my day.

I send a message to Brynne, I was like ‘They said yes!’ And this is for me, it’s a personal topic because I don’t see it everywhere. Like I see everything about autism, but not autism in our community, all Latinos. So I want to start by asking you guys to introduce yourself.

Arianne: My name is Ariane Garcia. I’m an autistic writer.

I’m based in San Antonio, Texas. I’m an editorial board member for StairwaytoSTEM.org which is a website resource for autistic students in transition from high school to college. I was actually not diagnosed until I was 25. The reason I even went to go, I didn’t even, it wasn’t even seek a diagnosis. I just, I decided that I was like, you know what?

My career is stagnating and I need some outside assistance here because the feedback that I keep getting is that all has to do with my social skills and it teeters on the edge of my personality. So I’m like, some of these things I’m getting feedback on, I can’t change. So I was like, maybe if I go see a therapist, I can get some management techniques and I’ll be able to get past whatever wall I’m hitting.

Since I wasn’t succeeding at the same rate as my peers, my other Latina women peers around me. So I went to therapy and she referred me to a psychiatrist and then he was like, oh yeah, definitely autism. When he read my binder that I had made in that six months of everything that I was learning. I was like, this is great.

After that, I just sort of had a piece of paper that said that those social things that I was dealing with were no longer something that, that I can really be told anything on. And so that really just kind of knocked my career completely off the rails. I had to, I really had to start all over again. And every time I enter in a new sphere, I’m just like, oh, Hey, these are all the things I’ve done before.

Never done anything quite like this, let’s go. And because I have my diagnosis now, honestly, people are just like, okay. And then we go. So that’s been kind of cool, but yeah, it’s definitely been a huge adjustment. These last six years I’ve been with the diagnosis. It’s only been 6 years.

Kristina: I’m Kristina Lopez, assistant professor at Arizona state university and the school of social work.

And I also am a self advocate because I have epilepsy. And that’s actually, what got me started in this field is that I grew up undiagnosed for a long time with epilepsy. I didn’t get a diagnosis till I was 13. And part of that is a lot of the same or not the same, but similar issues that we find with the autism diagnosis.

Concern of delayed diagnosis is that my parents didn’t really understand what was happening. The doctors didn’t really want to deal with my parents or me, and we ran into a lot of institutional bias and implicit bias in the systems. And so, it took a long time to get a diagnosis. And then the school systems are really, really disproportionately unfair as I went through the phases of treatment.

Which brought me into actually the autism world, because I ended up in special education classrooms, which weren’t actually the appropriate setting for having epilepsy at the time, or at least not the type of seizures I was having, but it exposed me to autism, which drew my interest in wanting to know about autism.

And this was like in the late nineties, early two thousands. When autism was super super brand new for anybody. And that brought me into wanting to work in special education after high school. And I started to really notice immediately that I worked in title one schools in California. So I grew up in Southern California.

I would have one white child in my class who had lots and lots of services. But all of the Black and brown kids in my class had no services except they were in special education. And so I really wanted to understand better why was this happening? What was going on? They all had the same diagnosis or my Latino kids didn’t even have the right diagnosis.

And I really young could tell that this was happening and I couldn’t understand why the powers that be weren’t doing anything about it, except blaming parents all the time. Like, ‘Oh, those parents don’t want services. Those parents don’t want to come to meetings. Those parents don’t participate in IEPs.’

And so I really channeled my career as I went through college and graduate school into wanting to understand what was going on and how I could help to improve systems of care and support for Latino families. And then of course, for other families who are BIPOC or Black indigenous people of color. So that’s what I do now.

It’s focused on culturally informed interventions as a way to really strengthen support for families and not blame them for what’s happening in terms of the disparities that we see persistently happening.

Joyce: So do you think that other states are doing better than others? Or what do we need to do in your opinion?

Arianne: Fifty different sets of healthcare laws makes it really difficult to navigate cost comparison. So when I was looking up some of the stats, Autism Parenting Magazine named Colorado and New Jersey and Massachusetts, there’s a couple of others named in in there, too, but that was based off of insurance coverage and providers in the area based off of the population.

So it’s not even really measures that are transferable to culturally-informed care because they’re based off of like a white lens, which is that they can trust that their insurance companies or like, is going to send them to a, like a doctor in their network. That’s going to listen to them at all. I know I’ve been in situations where my insurance coverage sent me to the only doctor in my area that was a specialist.

And we didn’t get along cause my autism, right? And I wasn’t diagnosed. And, and so it’s really difficult to pinpoint those kinds of things. It’s so much easier to just look at it all, like it’s all broken. Instead of, is there any good to any of this? Like, it’s totally busted. That’s my opinion.

Kristina: Arianne, thank you for checking out the, I tried also to find a real answer, honestly, this question, I was like, I don’t think there is an answer.

That was my immediate reaction to the question, because I know even when the CDC does the surveillance data releases, which looks at the prevalence rate across the different states, which isn’t all states, it’s just select states, including the state that I live in, which is in Arizona, it still is very suspect to what information is available and the way that the education system is broken down and the medical system and how records are kept and what is systematic across all these states is that Latino and Black children seem to have records that are always elusive.

Like that is what is consistent across states. Is that there’s disproportionality. And what I can say in terms of the better? California seems to be, which ironically isn’t one of the surveillance states. It is better with policy. Right? In a lot of ways that’s California’s thing, though. California has very liberal policies that they have the regional centers and there’s 20-something regional centers that takes care of case management for individuals with developmental disabilities.

And so they have, uh, a way to place and care for people with autism. And because the LA Times did an exposé on how they’ve had gross disparities years ago against Latino and Black children within the regional centers, so that they weren’t spending as much money on services and supports for Latino and Black children with autism.

They then tried to turn around the system completely and provide better support and care for them by developing supplemental policies, to then have minority supplements. And like we’re going to erase the disparities that we created in the first place and try to sweep it all under the rug and come out on top and show the rest of the world that we are doing better.

So they have all these policies in place and they have new programs and they have, um, like even in San Diego, there’s been an improvement in identifying Latino children. And there’s lots of different programs around, including the use of the intervention I mentioned, Parents Taking Action or the promotoras programs that have as a result of the exposé that was done in the early two thousands that there’s improvement.

But again, that’s come out of another system, so the LA Times, doing an exposé on how disproportionate the system was in the first place. So, I don’t know if there’s really a certain state that’s doing much better, but there is people that are aware that people are not doing the right thing.

And the same thing is actually happening in an Arizona. We have the Arizona developmental disabilities planning council that I sit on, that we are now in the situation of recognizing these disparities as well here. And I’m developing policies and grants and things to make up for what hasn’t been done so far.

And I think that’s kind of like the same thing that’s being done across many states.

Joyce: Yeah. Yeah.

(chime sound)

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(chime sound)

Joyce: Brynne and I did an interview with, who was it, Brynne? About medical, Medicaid, and data and nothing.

Brynne: Yeah. We sat down with some researchers from the Autism Institute out at Drexel here in Pennsylvania.

Joyce: And it was like, there was no data also like, uh, we were surprised. So like we were shocked. There was no data, either.

So I just hope that you guys would have known something because it’s so hard. We can’t. It is very hard.

Arianne: Yeah. The most common experience with this isn’t like, where can we pick up a move to get the best care? It’s alright, well I guess I’m just going to have to suck it up and see who’s here.

Joyce: In Pennsylvania, the reason I live here is because Brynne lives in Pittsburgh area, we get medical assistant, born

Arianne: But were you like born and raised?

Joyce: I came from Puerto Rico.

Arianne: So you okay? Okay.

Joyce: We get medical assistance for if you’ve in the spectrum and doesn’t matter the cost. Which is a plus. So then you get services, but I don’t know how other states work.

Arianne: Oh, yeah. In Texas in Texas they’ll do anything they can to not give you… (laughing)

Joyce: But here they, they do, but there’s no, I can’t sit here and say, well, how many Latinos are benefiting or know this, does not make sense? Like, I saw that the early intervention was sending out papers that, Hey, you can apply for medical assistance if your child is in the spectrum and they trying to name it in Spanish, I just don’t know if families are taking advantage of this because a lot of private insurance don’t cover respite or don’t cover a lot of things in Pennsylvania, but Pennsylvania does.

And it’s so hard to see if like Latinos are taken advantage of this. Or not? Because there’s no data at all.

Arianne: Yeah. And you know, I just thought of something similar in, uh, here in Texas. Um, if you have autism, you can buy into the Medicaid program. It was something that I had that I actually forgot that I considered for a little while, but I just decided that I couldn’t pay for another insurance where in Texas there’s a lot of private doctors don’t accept Medicaid.

So I would have basically just been paying for extra insurance to see, you know, the government doctors that I, at the time, it was like, I don’t know if I trust all this. You know, in Texas, there’s always a cost here. They put a price on everything here.

Joyce: No, there’s not a cost. It’s not a cost at all.

Wanna come back in, Brynne?

Brynne: Yeah. So, Pennsylvania has a weird loophole waiver where even if your household income, at least for children and under, I think it’s 21. Even if your household income, it doesn’t matter what it is. There’s no income limit for the family. So that ensures that at least all of the children, it gets way dicier when we start getting into adulthood.

At least for younger children, they all have free access to Medicaid, even if you already have private insurance. So they’ll even pick up whatever deductible or like, whatever part of your private health insurance plan that it doesn’t pay for. But Joyce, when we were talking to the women from the Autism Institute, one thing that they said was that Texas is really, really hard to get data for because they’re the state that doesn’t even do waitlists.

They just opened the programs. And if you get there in time, you get there in time, but there’s not even like a wait list. So we don’t even know how many people are waiting for services in Texas.

Kristina: In Arizona, we have, so everybody has access. Well, it’s called Access. So it’s funny because they have access to Access, which is Medicaid, when you have a diagnosis.

So regardless of income. And then of course you have families that if they have private pay insurance, they can also utilize that. But a lot of like the premier autism centers don’t take Access. So while yes, you have a form of payment for a diagnosis and different things and services, you know, you can’t get the best care and there’s wait lists.

And there’s different things that are still barriers to getting services. Our Phoenix children’s hospital, which is one of the like very limited places to get in access to a developmental pediatrician has a huge wait list. So there’s amilies that are waiting for a diagnosis or to then get the next step to getting Access or getting AZIP, which is Arizona, early intervention program, which then gets you to the next step to get services.

You know, so it’s like, you’re either waiting for a diagnosis or waiting for services at some different step of each phase for anywhere from a year to, you know, multiples of years. So while there’s these services, getting to them can take forever. And by and large it’s racial, ethnic minority families who are waiting and waiting and waiting.

Joyce: Yeah. Yeah. That was the thing that we couldn’t find any data because it’s not like it’s you sign up and say, Hey, my kid’s autistic. You can get Access. They put you, let me just say the applying for this is not easy. It’s not like I can say, Hey, you have to go through doctors. It’s a waiting. And then it goes to a third party when it’s finalized and then it’s completed, but it’s not like an easy step that I’m going to say, Hey, you know, by the way.

But I can see why a lot of families don’t know. I mean, it’s hard. It’s like applying for social security just to get medical assistance, but there’s no data either. Like if Latinos are taken out on like nothing. No, no. And this is kind of like sad because I don’t know if they know that they can do this because the services we have in the area that I live in has so many services. One of the

Arianne: One of the things too, that when they did this whole, like, which states the, then they chose Colorado under Jersey and Massachusetts, they chose based off of the insurance coverage and the providers. And we’re kind of more talking about federal and state and state level, like laws and stuff like that.

That law you were just talking about where it doesn’t matter your income, like, specific to Pennsylvania and, you know, I’m sure that other states have specific, like California probably has their, you know, they had, they have, I think we mentioned earlier their own specific laws, too. It adds like a really like another layer of like regional difficulties with people and living in whichever area, you know what I mean?

It adds another level of complication.

Joyce: Yes, yes, yes. Right there. Yes, because I knew about it because I did my own research, but I’m sure. You know, it’s not like it’s advertised like, Hey, you can get…just like the ABLE accounts. I asked the question as to why this is not advertised in Spanish or to the community.

So people know because it’s not important enough.

Brynne: I think in the next section, the biggest thing was talking about high school to college. How all of that works.

 Joyce: And whatever is important to you guys, that you want to say, go ahead.

Arianne: I just want to the point of the unique hurdles that you know, the young adults facing, I remember very poignantly filling out the FAFSA paperwork is really hard.

And like, I remember being 18 and they were like, come after school and we’ll help you fill it out and bring your parents. So I, I did that. I showed up after school and I, I brought my mom and my mom had never filled out the FASFA and she was a cosmetologist. That’s when they cut hair, right? They’re not in space?

Joyce: Yes. Cosmetologist.

Kristina: My mom’s one, too, Arianne.

Arianne: I think I was getting confused with cosmonaut for a second. I almost called her cosmonaut. She is a cosmetologist. And so she didn’t fill out the FASFA. So we were this there and my mom was just vibing, like shes’s just here for moral support and she couldn’t help me at all with this. And I was waiting for them to come and help, but they were helping other kids.

And after a while of us just sitting there waiting for them to come and help us, my mom had, we had to go and she had some where she had to be. Because we weren’t supposed to be there for that long. That they were just like, yeah, it’ll help real quick. But I guess there was like a short staff thing I have, I really have no idea.

I do remember feeling disappointed and I didn’t fill it out and I didn’t go to college and that gets perpetuated, you know what I mean? Like I can see how easily I could fall into that role of like my kid being like, Hey, come with me to this thing. My kid seems to know what’s up. Like, okay, you want to go to fill out the FAFSA and like, I’ll go with you.

Like you seem to know, I don’t know about all that. Let’s go. You know what I mean, things have changed since the eighties or since the two thousands or would be my time. I can see how that happens. And it just makes me kind of sad because then you have first-generation Latino kids who might not know about Pell grants or because they’re first generation, even if they aren’t first generation, second generation, like my mom, she had an idea about Pell grants, but because of my older brother.

That was information my older brother brought home. With the information with the FAFSA that I brought home, my little sister was able to go to college. She went to Texas Tech for a little while. The information that you bring it, it does service the community, but sometimes not in the most effective ways. I think some of those, some of those hurdles, it goes back to information.

You’re entrusting an 18 year old kid with all of this, like federal government paperwork to try and get financing, to go learn more things. And if they have a lot of pressure to stay home and to work for the family, it can be really easy to fall into that pressure.

Joyce: Do you think it’s because the forms, like, I don’t think my daughter could, because she’s in a spectrum too.

Could not fill out the forms without assistance either. I don’t think we have like Latino and then when you’re autistic, too, it’s hard for them to fill out a form or to understand. And I don’t think sometimes we don’t have that support there. I also feel like going to college, I sometimes feel that Latinos are not being pushed by the counselors as white students.

Arianne: That’s true.

Joyce: But that’s what we see. Like you see, you don’t see the support. If you’re a brown or Latino or Black, as you can see with a white student, that’s just the facts and reality. So if you add autism to the — forget it, then you won’t get any help. Like they already labeled you.

You’re Latino and you’re autistic. You’re a label no more.

(chime sound)

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(chime sound)

Kristina: You know, I can recall when I was in high school and because like I mentioned with epilepsy, I had to transition to like three different high schools, hospital home study. I had brain surgery and like all this stuff happened. So I transitioned to a bunch of different high schools. And by the time I was looking at colleges, the counselors did tell me like, oh, you need to go to community college, which isn’t a bad thing.

And I don’t tell students, they shouldn’t go to a community college, but it was a way to say you’re not college material. And, you know, I told the counselor, just give me the application. And this was for our state school, that at the time it was known as like everybody got into that school. So to tell me I couldn’t, it was a way to say very coded, you know, you’re not meant for college.

And I was like, no, just give it to me. I’ll go anyway. And I was like, um, and I went to college to the four year university and I still had to take a year off because I, my epilepsy came back really bad and, you know, I had surgery again. But I think what’s really important and what I learned along that whole process, and it also had interfaces with students with autism and other developmental disabilities was that it’s really important to become a self advocate through high school or probably even before then junior high through high school. So that as the individual with the disability, whether it’s autism or anything else is able to start to understand their own paperwork, their own records.

So that when they want to go to college or wherever, you know, get a job, whatever it is that they desire at that age, they’re able to look at the paperwork and somewhat have a concept for what am I looking at? Cause I had to fill out forms to be able to transition from an IEP to what accommodations I needed at the college level.

So to go to the disability resource center and you know, my parents also, they didn’t go to college. My dad, he finished junior high or maybe he didn’t finish it. Seventh grade, whatever seventh grade is. And my mom also is a hairdresser. You know, they had no concept for any of this stuff. And they were like, okay, do whatever you want, Kristina, but we don’t know what you’re doing or why you’re doing it.

And even to this day, they’re like, are you like, what are you doing?

Joyce: Yeah, my mom has the same thing, too. What are you doing to make money using the computer? That’s what she ask me.

Kristina: Exactly! They think it’s great, but they’re like, we don’t get what you do. And so I had to really understand, like what’s in my medical records, what’s in this. How do I get extra time on tests? Cause I have cognitive delays resulting from whether it’s medications or the surgeries.

And I think that that was the biggest life lessons. And that’s what I see now that I’m, I’m transitioning now in my research from only looking at young kids. That’s what I did for the longest time, to looking at the transition age. And specifically, it’s funny you mentioned Drexel, I’m working with some people over there to look at the transition from high school to adulthood among Latino youth with autism, because we don’t know about their experiences.

We have all these concepts of what happens with transition to adulthood in autism. And it’s all based again, off of white males. And so we need information of what happens in the Latino culture. When you’re a girl with autism and already you’re a Latina and you’re not expected to leave the house unless you’re married and this and that.

And then you’re supposed to have kids or whatever. You’re not supposed to go to college. We don’t have information, but I can tell you I’ve experienced that. I think it’s really important for these kids to really understand what is going on in their records so that if they want to go to college, if they want a job, whatever it is, they have an understanding of what they need to write down on that next form.

Joyce: Are there any additional support that we could create to help transition easier?

Arianne: I think adjusting our collective societal expectations. Individualism promotes a level of independence that’s unattainable for a lot of people, but especially autistic people. And now we should really be as a society focusing on accepting and implementing the ideas of interdependence by maybe like a goal living alone could be somebody’s goal.

And then instead of overwhelming them with, well, you have to know how to do this. You have to know how to do that. You have to know what this happens with. That happens. This happened the other, just like adjusting that like, Okay. You live alone. And now what do you find that you have a hard time keeping up with dishes and I can help you with them?

I’m trying to limit what all we can do or try to guess, or try to overwhelm us with information of all the things that we need to know in order to live like alone, successfully adjusting those expectations to interdependence and making moves away from language that promotes shame and promotes these negative ideas that autistic people have of neurotypicals that make them mask in the first place.

Just really giving each other, the grace of being our favorite selves.

Kristina: And I think allowing people the space and time to like Arianne’s saying, like figure themselves out and decide what works best for them enough with this idealism of, you know, whatever the best is is I don’t know. The ideal is supposed to be this like perfect picket fence, whatever, whatever, whatever.

And that’s not my ideal. I’m just saying other people’s ideal, but allowing people the space to figure out what’s best for them. But also as kids are in junior high and high school is allowing time for that exploration. I think a lot of that doesn’t happen until they’re in college. And then it’s like, now you’re supposed to be able to find yourself.

I think if we let them have the space earlier with building the independence aspect without necessarily saying like, and now you’re launched. You’re 18, go get an apartment, go do that, go to this. You know? You can be living at home that’s okay.

Joyce: Growing up Latinos, I don’t think the 18 matter.

Kristina: Exactly.

Joyce: That’s not how it works.

Kristina: Or – not my niece – my kids still ask, like, why does uncle whoever still live at home?

Joyce: It’s multicultural, too. That’s the thing too. Like as Latinos too, we have, we also have to do our parts, too. Because, my baby went to college. I was devastated. I mean, I was tough, but I was hiding like, okay. Don’t, you know, be strongly, could you 100, but my mom.

Well, it’s like, you know, because a female, you know, stays home, stays closer to home, but that’s, that’s some of the things even culturally, like even saying that, like, why would I let my baby go? But even at 18, that that is true because I feel like we have to stay. Like when you grow old, within junior high school to 18, you’re supposed to know everything about life and you supposed to go to college for four years.

And one thing that I, I taught my daughter will say, you go to school, how long do you want to go. Just don’t get into debt. Cause I was kind of afraid that she was just going to be like, I’m going to do this like everybody else. And then I’m not going to like it. So I wanted to make sure that you are you do you, what do you want to do?

If you don’t want to go to school for a year? We don’t go to school for a year that it’s okay. Because he was coming out of high school and then sometimes transitioning from high school to adulthood when you’re in a spectrum is kind of hard. You know? Even the transition can be hard for a Latino and then someone in the spectrum, too.

Arianne: Yeah.

Joyce: What do you think we need to do as a community to better ourselves and help autistic people?

Kristina: I certainly think, you know, increasing acceptance and understanding of what autism is and not the stereotypes of autism. I want to be very clear about that. It isn’t, you know, autism, isn’t just this, I know there’s images on TV now and in movies and a lot of it is the same.

Like autism is the savant. Autism is this. And if we had a wider range, especially with across race and ethnicity, that would be helpful, as well. So just to keep, I don’t want to overly use the word diversify, but it really is like helping other people to understand that autism is exactly the spectrum. Just like all of us.

We are all different and we have different characteristics and different traits and different markers and everything. And so if we could just keep increasing that understanding, that would be helpful, particularly within the community. Also with respect to that question about the interface with state violence.

You know, we still have that Latino adults or teenagers with autism would be more targeted by police compared to a white individual with autism. So the more we increase in understanding of what autism looks like across race and ethnicity, the more we can decrease the likelihood of Latino kids with autism or teenagers or adults being targeted and misidentified by police as doing something wrong.

I think that if we just continue to increase an understanding of what autism is, that would be really helpful.

Brynne: Thank you so much for coming on and talking to us about this today. And Joyce, thank you for pursuing this topic. I’m really grateful. This has been so cool.

Joyce: Of course, of course.

Brynne: This has been one of my favorites. I know we say this every time.

But this is one of my favorites. So, so good. For people listening, who are interested in learning more about both of your work and all of the exciting projects you guys have coming up. I’m wondering if you can just tell us a little bit about where we can find you moving forward and what project are you most excited about right now?

Arianne: I’m on my website, AriannesWork.com. Anytime I do anything, I put a link there. I’m right now I’m working on a series of essays. I have a bunch of like notebooks and diaries from pre-diagnosis like from my teenage years to like my early twenties. And so I was just going through them and like seeing how much I was missing versus like now that I know that I’m diagnosed and like, I have a lot of answers now, so it’s kind of kind, kinda like letters to my younger self, my musings based off of my young journals.

Kristina: And I am on ASU’s social work website. So there’s just general information about the publications that I have and things up there. But I’m super excited about, I don’t know if things will be funded, but I am proposing a couple of different studies. One is a five-year study with Drexel University and, um, some partners at UCLA as well to look at the experience of what we’ve refer to as Latinx, but I often refer to as Latino because that’s more innate to my tongue.

Latino transition-aged youth, to better understand their experiences and their needs, and eventually to build a culturally informed intervention for transition age, Latino youth, with autism and their families. To help them to transition to adulthood, whatever that may mean though, because again, I don’t know what that means until I do the research to better understand it and fulfill their needs.

And so that’s one thing. Another thing that I am proposing pretty soon will be a collaboration with Northwestern and some partners in North Carolina. And that is to look at more early intervention work. Again, culturally informed interventions for Latinx or Latino families that have children with autism.

So early age, that’s more zero to three or up to age five and to ideally get them early diagnosis and treatment. And then lastly, looking at really a way to increase more of inclusive understanding of what does Autism in adulthood look like across race and ethnicity. And so I do a lot of trying to develop a better understanding of Autism in many different ways.

And then lastly, a chapter in a Spanish-language autism book that partners in Latin America are actually developing. So that’s exciting because it will be the first, all Spanish language autism book for both information and resources for families out of Puerto Rico, actually.

Joyce: Yeah, I think that’s what we’re lacking, too, within our community. Like more see us on TV that talking more about it in the media. Like I’m not seeing that sometimes it just drives me crazy sometimes, but this is exciting about the book. Can you let me know when that book is coming out please?

Kristina: For sure. I will.

(whooshing sound)

Joyce: Thank you so much for listening. And if you enjoy this episode, please leave a five star review on your platform of choice and don’t forget to subscribe. So you don’t miss any episodes.


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