Episode 18: Autism in the Latino Community, with Arianne Garcia & Dr. Kristina Lopez, Pt 1

Join us today for a conversation with Arianne Garcia and Dr. Kristina Lopez about autism in the Latino community.

This is part one of a two-part episode. Be sure to subscribe to Mom Autism Money on Spotify, Apple Podcasts or Google Podcasts so you won’t miss part two when it drops next Tuesday.

Today, we’ll be talking primarily about Autism diagnoses in the Latino community, and the systemic obstacles that prevent people from accessing services to which they have a right. We’ll talk about Bruno, learn about how Arianne’s diagnosis and example changed her community, and learn about culturally-informed interventions Dr. Lopez is pioneering around the country with her peers.


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. You’re going to get to listen to part one today. So make sure that you subscribe to Mom Autism Money in your platform of choice, whether that’s apple podcast, Spotify, and once you’re there — and if you like the episode — please give it a five star review.

Brynne: We are so excited for this episode. I know I learned so many things and we’re excited to share it with all of you. Before we do, we have one other quick 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 Joyce and I.

So if you like Mom Autism Money, we’d appreciate it just 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. All right, now that we’ve got that out of the way. Joyce, why don’t you tell us a little bit more about our guests?

Joyce: So about our guest today.

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 and 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: When you say you were in a classroom in a special education classroom because of epilepsy. Oh, wow. Like that right there.

Like when I grew up in Puerto Rico, my kids probably would have been put in a classroom like that all bunched together. You know what I mean? Because we were never taking the time to be diagnosed.

Arianne, this question is for you, you grew up with, with Latinos, obviously in the community. So as an adult with autism, how do you say you have been treated after finding out?

I mean, you don’t have to answer that question. Like, how, do they understand?

Arianne: I’m willing. Yeah. I’m so willing to go there. It’s something that, you know, even my friends and family were having problems with approaching me on, you know what I mean? Like, Hey, like suddenly we can tell you’re really struggling. You know, this is my, I have to, does this have to do with that, that thing, that, that new diagnosis thing you’ve got to go with that autism or whatever, you know, is how we say it down here now.

And so, and so was just like, yeah. You know, and it’s so hard because you know, they see one thing, you know, they see your mask. And they’re like, I’ve always seen you succeed. You’ve knocked down, whatever it is. And you know, I’ve seen you overcome what have you, it becomes just like a part of like your personality, almost. Nobody stops to think like, why are you having so much trouble?

You know what I mean? It’s just like, oh, well, whatever you’re having trouble with, you’ve got it. We all have our troubles. You know, growing up when I was dealing with lots of different things, I blamed it on lots of different things. Like when I was getting teased, I lived in north Texas in a small town in north Texas.

And I don’t know if y’all have seen my picture, but, uh, I’m a little brown. I also have hairy arms, you know what I mean? Super dark long hair. So growing up, I would get teased on these things because as you guys know, the white beauty standards means hairless. My reaction to being bullied was not a typical reaction now that I look back on it.\

There, I went through a period of time where I had shame about having hair on my arms. You know, I bleached it, I shaved it off. And then I grew out of that shame because I was angry that anybody would make me feel bad about something my body naturally does. I went through those little phases for all the little things that I go through.

Like, oh, you know, I have bad social skills. Like I used to, I used to joke that my first impressions were the worst impressions because I wouldn’t know how to relate to whoever I was talking to, without any information from them. And as you guys know in an introduction, it’s really just low level information. Like my favorite color is this.

I have a cat or I have kids or whatever, then there’s a level further than that. I hang out in that level further than that, of like, okay, tell me your deepest, darkest fears. And I’ll tell you mine. It’s like we met five seconds ago and I don’t mind. I bleed everywhere. As you know, this is what it is, what I say, but it’s, as I understand it do now that it’s just so hard for our community to talk about things that once, you know, one person puts themselves out there, it makes it easier for other people to put themselves out there.

And you never know what someone’s dealing with. I’ve been in lots of situations, especially when I first got diagnosed, where someone would share with me that their nephew was autistic. Maybe they were worried about their prospects before, but having met me they feel relieved. I mean, I’m glad to be able to help. It sometimes feels like a lot of responsibility because I don’t communicate the best all the time.

And in our community down here, there’s a lot of like non-verbal communication that I miss out on. So I have to be super vulnerable, like, oh, what is your face doing? I don’t get it. You know? And that kind of makes people have like certain assumptions about the things I do know and understand versus what they think I might not know and understand.

Like, oh, you can’t read my face. Well then can you like, what can you read or whatever, you know what I mean? Like not recognizing it’s different things. And I deal a lot with ableist microaggressions. I just kind of take them and I try to use them as opportunities to educate. Being nitpicked like that, like in a microaggression fashion?

The only way that someone can know that it’s a microaggression, that it’s a pinprick is if you bleed, if you can get poked with a needle and still have blood, it doesn’t mean that it crushed your soul. Or that you have to go to the ER. And sometimes people just need to see that blood. I’m not afraid to show it.

I’m not afraid to be like, ‘Hey, that hurt me. And I don’t like it.’ I’m not afraid of confrontation. I’m not afraid of saying I, I didn’t like something because it hurt my feelings. That kind of puts the onus on the other person, like, okay, so now how are you going to react to that? Cause that’s going to say everything about you.

And if people react differently to that than they would have then, yeah. That’s if that’s going to change them forever, then at least they won’t be as micro-aggressive to other people.

Joyce: Yeah.

(chime sound)

Nondescript voice: And now a word from our sponsor.

Joyce: ¿Sabías que anteriormente, a las personas con discapacidades solo se les permitía ahorrar $2,000 sin poner en peligro los importantes beneficios de los que dependen?

Al abrir una cuenta ABLE United, los residentes de Florida ahora pueden ahorrar libre de impuestos mientras mantienen beneficios públicos como Medicaid y SSI (y todo con la ayuda de familiares y amigos).

ABLE United ofrece opciones de inversión para ajustarse a sus metas de ahorro que se pueden gastar en gastos calificados por discapacidad como vivienda, transporte y citas con el médico. Además, el estado de Florida es líder en la eliminación de la recuperación de Medicaid en las cuentas ABLE.

En este momento, hasta el 30 de junio, cuando una persona abre una cuenta ABLE United, recibirá una contribución GRATUITA de $50.

Únase a los miles de floridanos que ahorran con ABLE United, inscribiéndose hoy en AbleUnited.com.

(chime sound)

Joyce: Dr. Lopez, what do you see is happening in our community? Like why do you see that Latinos being underdiagnosed?

Kristina: There’s a number of things that are talked about. And this is one of the things that I think is really important to highlight is a lot of people will say stigma. Like people don’t want to talk about it in the community, which is true.

That’s a very important point to say that there is stigma around disability. There is stigma around mental health. But I think it’s, it’s worrisome when we get stuck there to say that it’s part of our own community, that we don’t talk about it. So it doesn’t get diagnosed when there’s also these other systems, you know, there’s doctors and psychiatrists and psychologists and all these other people that are supposed to help us and encourage us to get a diagnosis or listen to us.

If we say, you know, my child is acting this way, or I’m not sure they’re not talking so much, you know, all these like little nuggets that a mom or parent might say to a doctor or a helping professional and that helping professional could say like, well, let’s look more into this. And instead what ends up happening a lot of times is the helping professional might say, well, let’s wait and see, or is it because they might assume it’s because there’s Spanish being spoken in the household and it’s more of a bilingualism concern and put the parent off.

And so that delays the diagnosis further. What I want to make sure is very clear is that we there’s also these systems that come into play that might delay a diagnosis. And that’s actually, what’s in research that yes, there’s stigma in the community itself, but there’s also doctors and providers that might not follow up with Latino families as much as they would follow up with white families to actually push forward with a diagnosis as early as possible.

And so there’s multiple things. There’s also issues of, you know, parents who may be fearful of their own immigration status. So they may not push forward with different systems because they may be worried about what if they’re unveiled of some sort of immigration issue of their own status, or may not know that their child has a right to services and supports regardless of immigration status of the child or, and/or the parent there’s issues of income status as well.

Not knowing again, that children have a right to free and appropriate education when they’re within school age, but also even before school age, they have a right to all these different services in different states. So there’s a lot of lack of awareness of what’s available and that children can get a diagnosis through different services and supports.

There’s so many different services navigating them is complex. So without knowing all this information, it’s really difficult to get access to these things. So there’s access issues, there’s information issues. There’s certainly a stigma issue. And there’s also bias within the providers that are supposed to be supporting families themselves.

So it’s like this whole big giant system of things that are preventing early diagnosis or diagnosis. Also what research shows is that Latino children tend to be diagnosed also with intellectual impairment at a higher rate than white children. So they may be diagnosed with something, but may not be diagnosed with autism when it would be more appropriate than that intellectual impairment diagnosis.

There’s layers of things. And what we need, I know we’re going to get to this in another question is really is for parents, Latino families, to get more information about what are the expectations about developmental milestones and also for providers to have information about, you know, what, what does it look like for a Latino mom or Latina to say, you know, my child is doing this?

Oh, maybe that’s an indicator of the child has autism, not just the mom doesn’t know what she’s talking about.

Arianne: Yeah, semantics is a big thing. You know, if a Latina mom is going to the doctor’s office saying, ‘Hey, my kid is doing X, Y, Z,’ and the doctor is interpreting that as ABC, that’s completely different.

It turns into the communication issue. There’s so much nuance.

Joyce: And also through like language barriers. For example, when you go to the doctor and this is what I describe sometimes to Brynne, sometimes there’s a disconnect. Like I can like for first time generation, like if I come here from another country, I can say basics, but I cannot go into details either.

That right there is a barrier, like I can say I’m sad, but I can’t really go into more details or so that right there is a big like issue when you come to a country and your doctor is you know, Blanco, it doesn’t like, I’m like, oh, he’s acting up, but I can’t go and explain to detail what acting up is. And that was like, there was not like I support it or we didn’t talk about it in the family or we’re going to see so-and-so, but maybe that’s, I don’t want to act like this, you know, like does that make sense? Like that that’s I was like 20 in my twenties.

I know my child was delayed, but I, no one was listening and I was also too embarrassed or scared because everybody was like, well, you know, we have to do this differently or she’s not talking well, it was always something I would say it’s like We Don’t Talk About Bruno. It was like my family right there.. We don’t talk about it. You know, we act on this and we dress like this.

We say this, we don’t talk about dinero. We don’t talk about mental issues. That’s how it was.

Kristina: And I’m so happy you brought up that We Don’t Talk About Bruno because it’s such a perfect example of like the protectiveness of Latino families that is a positive, but also a negative, you know, like there’s, there’s an acceptance of Bruno, right?

Like he’s part of the family, but we don’t talk about it. We’re still including him kind of, but not really. Included enough. And that’s what we see. Like I was just talking to somebody the other day, who said, you know, a lot of my Latino families, like the kids are eating fine compared to the white families that I see where they have a lot of eating issues with the kids.

And then all the kids that they’re referring to have autism and the families are very protective of what the kids are eating, gluten-free and this and that. Which is, you know a thing, and that’s good and whatever the kids’ needs are, but those Latino families include the kids in everything, and they just have to be part of the family, but they’re not getting as much services and supports.

So it’s like on one hand, this is a good thing. The families are being inclusive, but they’re not getting all the services that they could get because they’re not necessarily talking about the needs and the services and everything. So it’s like, it’s a positive and it’s also not so much a positive all the time.

But it’s also part of it is that they’re just not aware of what is available and could be used.

Arianne: And a lot of that awareness comes from lack of information.

Joyce: Yes. Or the mentality that if it’s autism or disability, it’s a life of poverty, too. And that’s, that’s something that that’s, this is why I wanted to do this podcast. Right away. It’s like, oh, well you got to go do this for social security. Or you gotta like the mentality that just because you have autism or any other disability, your life is of poverty, you know, you can’t do much.

And that’s that’s so that is not true. There’s so many things out there, you know? So this is why this podcast and just talking about it with you guys it’s it just brings me hope that I’m doing the right thing.

Arianne: Yes, absolutely. Yeah. I mean, it’s, it’s up to us as a community to like to take what we’ve learned from the world and bring it back to our community.

It’s up to us as a community to trust each other with the information that we’ve obtained from world, doing our own conversations, you know, with our families doing that hard emotional work and swallowing through that discomfort to have those talks. It’s so important because it makes it 10 times easier. We’re all struggling with something similar.

I know as soon as I started talking about what I was going through I had so many of my friends that I didn’t even know had relatives that they related to me with. And so they were able to take my diagnosis back to their families and have those conversations. And I have a little cousin who was diagnosed with autism, too.

Once I got my diagnosis in my family found out. I didn’t realize that I was that different. So when I had my diagnosis, I had been reading, but I didn’t tell my family once I got my diagnosis. I kept it to myself because I didn’t know how they were going to react. All the reading that I have been, you know, on forums and stuff.

They would get disbelief from their families and, oh, you’re not like that or whatever. And when I took it to my family, I was expecting a lot of pushback. So I armed myself with statistics, with facts, with my records, all my stuff. So that, that way, if anybody tried to give me any pushback, you know, I could educate. And then they go and tell me, ‘Makes sense.’

What are you talking about? You know what I mean? Like, so it’s, it’s a truly like a, we don’t talk about it thing and they don’t even talk about it to Bruno, you know?

Joyce: That’s funny because you were expecting and they’re like, oh, but then if you knew, why didn’t you like help me out here?

Arianne: Yes! Exactly! What do you mean, ‘Makes sense?’ I was like if you had an idea, you know, like where was that support? But it’s one of those things you never truly know what someone’s struggling with. And if they don’t say anything, we only ever assume that everything’s okay.

And if we don’t have the language to express how we’re not, okay, people will still assume that we’re okay.

Kristina: And I think that that’s so important to arm yourself with information and especially the statistics and research, especially when going to the different providers and services systems, because the assumption is that Latino families don’t know information.

You know, they don’t know that they’re supposed to, if they’re Spanish speaking, a Spanish speaking family that they’re allowed to have translators in the IEP meetings that they’re supposed to have information in their native language that they’re supposed to have this information. Like it shouldn’t be a secret that there have all these rights to these things, but providers, whether it’s the school system or the medical system or any system doesn’t come forward with that information.

Arianne: Oh, and that is so true. I started at the hospital and I was a registrar that they gave any patient who needed to use the language line or the sign language translator computer.

It was like a web cam. It was an entire computer we brought into the booth and they trained me to be a super user for that because I insisted on having it for every patient that needed it. And I insisted on teaching everybody. I was like, we were supposed to be using these. What do you mean? Like you’re asking the family members to translate? You know? I was like, we have machines for this.

We have three computers back here. Like each of us could use one of these at the same time. Why aren’t we being provided the training? And it went all the way up. That’s how I became a super user. So that I could teach everybody who needed it. They would send me, oh, they need to use the translator phone over at the other building across the campus.

Can you go teach them real quick? And I’m just like, okay. And I’m just standing there. And I go there and I’m standing next to them while we’re pushing prompts, calling a number, pushing prompts, you know?

Kristina: And that that example just highlights how, you know, there’s missed opportunities for jobs and for these resources that are available, that’s why they were created.

And yet nobody’s optimizing their use and instead families are falling through the cracks. Children are getting not diagnosed or diagnosed inappropriately and missing out on services when these things are available to them. But if families don’t know. And that’s that part of interventions, you know, half the interventions that should be created or are created, come forward first with information for families so that they can learn to advocate for themselves so that when the doctor says, oh, you know, you’re saying that your child doesn’t talk enough.

It’s because you speak Spanish to them that the mom can say, yeah, but Spanish, isn’t a barrier to speaking any words.

Joyce: That is so true, or they’ll say, do you speak Spanish at home? What does that have to do with anything? He’s not saying anything, nothing at all. So, so yeah, that was the first thing that I always got.

So like, has it gotten better for me? Yes. Like my kids was a big gap between my boys and my girl, but I will say that that was one thing that maybe cause you’re bilingual or, you know. It was always something like that. Now it’s better where I live at, but I am lucky that I live where I live at. That’s the whole point where I live.

Would I move?


Arianne: I get you. I get you. I like sometimes I just want to pull my hair out and leave San Antonio. I’m like, where else would I go?

(chime sound)

Nondescript voice: And now a word from our sponsor.

Brynne: Did you know that previously, individuals with disabilities were only allowed to save $2,000 without jeopardizing the important benefits they rely on?

By opening an ABLE United account, Florida residents can now save tax-free while maintaining public benefits like Medicaid and SSI (and all with the help of family and friends).

ABLE United offers investment options to fit your savings goals that can be spent on qualified disability expenses like housing, transportation and doctor’s appointments. Plus, the state of Florida is a leader in removing Medicaid recovery on ABLE accounts.

Right now, through June 30, when you open an ABLE United account, you’ll receive a FREE $50 contribution.

Join the thousands of Floridians who saving with ABLE United by enrolling today ABLEUnited.com.

(chime sound)

Arianne: But that’s, that’s another part of culturally informed interventions too, is that they say in one study that children can absorb all languages thrown at them. And they have like regular kids who can speak five languages by the time they’re like three years old and like preschool and is like, how are you going to tell the minority kids, ‘Oh, was it because you’re speaking two languages?’ You know, like it’s just completely radically different standards of care.

Kristina: And, you know, for so long intervention is applied behavioral analysis, interventionists, OTs, speech language pathologists, whatever I would constantly hear. Cause I worked in that world for awhile they would say, ‘You know, well, we can’t send people out to that family because we don’t have any Spanish speaking interventionists. We don’t have any Spanish speaking interventionists.’

Like, well, you don’t have to have Spanish speaking. The kid needs support. The family needs support. Period. And, you know, and then the other thing, ‘Oh, well they have to start speaking English to the child. The child is confused.’ Like either way you’re preventing any services from moving forward if you keep saying we can’t do it for this reason, we can’t do it for this reason.

Something needs to be done. And now with this rage of dual language immersion programs, dual language immersion programs, because we have enough research around children who do not have disabilities that says, oh, multiple languages are fantastic.

And now it’s this, you know, privilege to be able to speak multiple languages, especially if you’re speaking Spanish. Now it’s okay. Now it’s, you know, everybody can go to these fancy schools that have a dual language immersion programs. So it’s really, it’s a strange paradox though, to watch and experience both as a mother.

Cause my kids who are neuro-typical kids go to a school with dual immersion, then I don’t speak Spanish because of stuff with my own family. Um, even though I’m Latina.

Arianne: Same. Same!

Joyce: Don’t be ashamed! Because my daughter, she doesn’t either, but she knows when I’m starting to get mad and it comes across. Oooh, she starts understanding.

Kristina: But I do speak because of the work that I do in the autism world, I do speak what I call Autism Spanish. I’ve always been able to work with Latino families, Spanish speakers, or non-Spanish speakers around autism, because the words are so limited around what we’re talking about, whether it’s in Spanish or in English.

And we have a common language and I’ve never worked with a family who says, wait, you don’t speak Spanish? Get out of my house. You know, they’re like, thank you for pushing forward and being here.

Joyce: And I want to also, also working with social workers too, if your last name is a Latino last name, you have to wait longer for services because they want to find you a Hispanic social worker. And I don’t think that’s fair. Why should I have to be put on hold, stress out that already Hispanic social worker, because they want to pair you with a Hispanic social work? That right there, it’s also, I am seeing now in this community is because if your last name is Menendez or Marrero or Rivera.

They wait to find a social worker that is Hispanic. And what do you think about that?

Kristina: And that’s where the culturally informed interventions can actually be helpful because what we use and when I say we, this is a group of us who have developed Parents Taking Action or Padres en Acción. And the main developer is Sandy Magaña and she’s at UT Austin in their social work department. Padres en Acción, we utilize promotoras de salud for community health workers, so that we’re not depending on people who have to be professionally trained through formal education systems, like social workers or applied behavior analysis or psychologists. These are everyday people like, you know, Latina moms and, and we, you specifically targeted Latina moms who have children with autism, because we want them to be as close to the experience of the moms that they’re going to be working with.

But you can really used like any Latina mother who was within the community that they’re going to be working with, but there are other Latina moms who have children with autism, who we train to deliver information about autism and about how to work with their kids to improve their social communication. And they go into the families’ homes.

Obviously this is without COVID happening and deliver this information in 14 sessions, two hours each. And this way you’re not waiting for these people to have to go to college and do this and do that. Some of them do and that’s their life, but you don’t have to depend on waiting and waiting and waiting for these formal education systems.

And instead, you’re helping to build leaders within the community that strengthen the community itself, too. And what we found is it really builds up the relationship aspect of the Latino community or culture. You know, they bond just like Arianne was talking about earlier. Like once you’re somebody who says like, oh, I have this experience, let me tell you about what I’m going through.

They super bond immediately and are like, oh my gosh, my kid did this. My kid had that. Let me tell you about what I went through. Let me tell you how to deal with this school. So yeah, they, there’s a curriculum that we give them that they focus on, but so much is about just their common experience and the secrets that is within being a mom of a child with autism and specifically being a Latina mom.

Joyce: And so I live in Pennsylvania. I always say in this podcast that I am so lucky that I live in the state and in the area that I live in because I have. Behavioral therapist, social workers, TSS, everything going on with my boys. Right. So I am very lucky in that, but I know that they come to the houses. Right.

And sometimes Latinos are very, like, they don’t like to share like my mom, when they come here, she’s like, ‘Oh, you know, like, what are they saying? Or, you know, what did, what did have to know about this?’ So they’re very closed to, so I know that’s probably why of Latinos don’t like, or don’t understand what services are.

Do you think? Cause when I was reading, it was the word was, say that again, Brynne, my accent.

Brynne: Culturally informed interventions.

Joyce: Can you explain what that is? Cause I kept reading it and I wasn’t sure what it was and I have to Google it, but I was like, if we mentioned it here, I’m not the only one that don’t know what that is.

Kristina: So culturally informed interventions, I would say not all of the autism interventions that have been developed to date, which have all been really based off of white male samples. So things like applied behavior analysis in its true form. That was really based off of white middle-class males. Because that’s who was available to do research with years ago and culturally informed interventions now really take into account who is this for?

If we’re going to say Latino families, let’s hear from Latino families. What do they say that they need? So we want to incorporate that into an intervention. What we know they need is information, right? Like, we’ve all just talked about at length that they need information, more awareness. So let’s build an intervention that has information and awareness about autism and child development.

But also we know that Spanish is possibly an issue. So maybe we should put in Spanish or at least make it available in English and Spanish. Relationships are important. We should depend on relationships. In the homes might be important or at least an option. So it’s, it’s putting in all these different elements of the culture that you’re actually going to focus on working with.

And so you could do the same thing for Black families or Asian families, or, you know, whatever culture. And so that’s what we’ve developed with this one that I referred to earlier, parents taking action, or Padres en Acción, the next step is putting in different elements of the Latino culture, but making sure that we heard as we developed it from Latino families, that yes, they needed to know about autism child development, how to advocate for their children in the school systems and for services and how to work with their kids so that they have an idea of how to improve their child’s communication.

But they didn’t want to hear from professionals. They want to hear from people like them because it builds on the relationships. So that’s really what a culturally informed intervention is. It’s building from the culture itself, what information they need to get the outcome that those families really want for that purpose.

Joyce: Thank you.

Arianne: 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 looked 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. I’m sure you were all excited and were into it, but we had to cut this one short, 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, including part two of this conversation next week.

See you then.


Skip to content