Episode 20 – How do we reduce disparities for Latino children with Autism Spectrum Disorder?

[00:00:00] Karma Chavez: Episode 20, how do we reduce disparities for Latino children with autism spectrum disorder. I’m your host, Karma Chavez, and today as part of our series, featuring researchers connected to the Latino research Institute. I’m looking forward to my conversation with professor Sandy. Magaña. Someone who I met in Wisconsin when we were both faculty there at UWU Madison in 2010.

[00:00:23] Karma Chavez: Now professor Magaña holds the professorship in autism and neurodevelopmental disabilities in the Steve Hicks school of social work here at UT. Magaña’s research focus is on the cultural context of families who care for persons with disabilities across the life course. And for that work, she has earned numerous grants and awards too numerous for me to list here.

[00:00:45] Karma Chavez: But trust me, she’s a rock star. Today, we’re going to discuss some of her research related to health disparities, health equity, and Latino children. Who’ve been diagnosed with autism spectrum disorder, professor Magaña welcome to Latinxperts.

[00:01:01] Sandy Magana: Wow. Great to be here, Karma.

[00:01:02] Karma Chavez: Yeah, I’m excited to have this conversation. And I guess the way I’d like to start out is just to have you talk a little bit about your connection to the Latino research Institute and how you’ve been began, collaborating with folks at the end.

[00:01:17] Sandy Magana: Absolutely. Yes. And I’ve only been at UT Austin for four years going on five. So really excited about that. And I met with and connected with Deborah Parra Medina right away. But we didn’t really start thinking about collaborations till a couple of years in. And I know that she does a lot of research with Latinx, children, and families around health And health outcomes and health intervention.

[00:01:42] Sandy Magana: So she has just a wealth of expertise there. And so I met with her to talk about a potential grant so we have a grant called PODER that Dr. Parra Medina has joined in on with . The LRI. So we’re doing it jointly with them and with some folks in Chicago, at the university of Illinois, Chicago.

[00:02:00] Sandy Magana: So this grant really focuses on first trying to identify what are the social determinants of health for Latinx children who have developmental disabilities and their families. And then secondly, in this upcoming year, we’re going to be working on developing an intervention for the children and family.

[00:02:19] Karma Chavez: And when you say social determinants of health, what exactly does that.

[00:02:25] Sandy Magana: Well, what we mean by that is a lot of times health outcomes, at least in the past have been blamed on people’s own health behaviors. You know, you’re not healthy because you did all these terrible things, right? That you didn’t take care of your health versus really understanding how . Social things like poverty and housing and, discrimination and other social aspects really can lead to poor health outcomes among people in our population.

[00:02:55] Karma Chavez: So this leads me then to ask you about clarifying a couple of other terms that I think are it part of this conversation about social determinants of health. So I hope you could tell us a little bit about how you define the terms health disparities, and what health equity is?

[00:03:12] Sandy Magana: Absolutely. So when we say health disparities a lot of people think that, well, that just means differences between one group or another, but really talking about differences that contribute to poor health outcomes among vulnerable populations. And so we’re not just talking about differences between men and women or a difference between older adults and younger adults.

[00:03:35] Sandy Magana: It’s more around vulnerable populations like racial and ethnic minorities. As well as GLBTQ populations or other, other populations that when I say vulnerable, you know, they’ve been minoritized and treated differently in our society. So really disparities, you really have to identify what is you’re looking at? So when we’re talking about comparing Latinx families or children to white children and families, we’re looking at whether there are differences in health, as a result of those vulnerabilities that they may have in society.

[00:04:10] Sandy Magana: And then health equity is really, I mean, those terms go hand in hand. And so some people say, well, I’m not going to use disparity anymore. I’m going to use equity because that’s the new term. Well, no, those those terms actually go together. I mean, equity is about making sure people have equal health outcomes.

[00:04:26] Sandy Magana: And so you have to identify what the problems are, where the disparities are before you can really determine how to make sure people have equitable health.

[00:04:37] Karma Chavez: So in some ways, it seems to me that this discussion of. Anxiety around talking about disparities, but just wanting to talk about equity as part of a broader cultural phenomenon to not want to talk about, uh, things that might implicate racism or whiteness or white supremacy. Um, and apparently we see that in your research arena too.

[00:04:58] Sandy Magana: Absolutely. Yeah. I feel like there’s sort of this desire to just say, yes, we should all have equal health outcomes and that’s great, you know, and, um, versus, um, versus really understanding that there are racial, ethnic differences, and there are social reasons for those differences in terms of health outcomes.

[00:05:17] Karma Chavez: So I want to primarily talk with you today about autism spectrum disorder. Although your work of course spans across many different neuro divergences. Uh, and we may get into some of that too, but I guess if you could just start out, tell us a little bit about what autism spectrum disorder is.

[00:05:35] Sandy Magana: Absolutely. And I want to examine that term. I mean, that’s the technical medical term, right? That the APA manual, uh, lays out in there. There’s this most recent version of the DSM, I should say. American psychiatric association. So the DSM five has the most recent sort of definition of autism spectrum disorder but a lot of people reject that term disorder.

[00:05:59] Sandy Magana: And I think that we need to honor that and think about that in terms of, um, maybe we should just say autism spectrum or, you know, there are a lot of other terms that people are using neural divergent, like you mentioned are important, but some of the things that are identified in terms of challenges or, you know, kind of framing it within the need for support versus deficits, but some people need a greater amount of support and services. Some people need a minimal, some people need small, right. But some of the challenges have to do with social communication. And so that can include interacting with other children or other adults depending on your age.

[00:06:39] Sandy Magana: Being able to communicate effectively in that way, some people who are autistic and I’m going to use the term autistic because many people on the spectrum identify that way because it’s identity first versus person, first language. And many people with disabilities are using that identity first language and owning it. And autistic children may have some communication and some children may have no communication. Like they can’t verbally express themselves, but everybody expresses themselves through gestures and other kinds of ways. And so even children who don’t have verbal communication can express themselves in other ways, but they’re often challenges in that area so that, that can be anything.

[00:07:20] Sandy Magana: If somebody’s verbal, having a conversation might be difficult. Maybe somebody uses a lot of repetitive language repeats with the last person said a lot or maybe the video that they watch over and over again. And repeats a lot of the phrases if they’re a child from that video. So there are a lot of ways, maybe they just play alongside of other children, but don’t really engage with them if they’re a child. So there’s a lot of ways that that can be expressed. And then the other aspect or large domain is restrictive and repetitive behaviors. And so for adults That often means kind of insistence on sameness or wanting to have things in the same order in the same way or the same route that you’re going to take, things like that and really feeling compelled to do that.

[00:08:07] Sandy Magana: Another aspect is for young children, there may be things like moving their hands in a certain way. That may look odd to other people and being repetitive in that way or repeating language. I mean, repeating after what other people say is kind of a repetitive aspect as well in the language area, but there are a lot of things like maybe children won’t necessarily play with the toy the way that it was intended to be played with, but they might play with it in the way that they want to play with it.

[00:08:36] Sandy Magana: Like really fascinated about how the wheel turns around and really getting into that. Right. So, we can say that’s the wrong way to play with a toy, but no, maybe that child is really learning something and knows a lot about how that wheel is turning. Right. So those are kind of the two domains.

[00:08:53] Karma Chavez: That makes a lot of sense. And I really appreciate that explanation. I wonder if I could just return briefly to something you said, which is that you use identity first versus person, first language. Uh, and that’s why you say autistic child. Could you just explain what that means and what the difference.

[00:09:09] Sandy Magana: Absolutely. So in the human services, social services field for many years, we’ve been saying you have to use person-first language, which means like person with disability, person with mental illness person, with autism person, with, you know, intellectual disability, whatever it is. The argument behind that was that the person is a person first before their disability.

[00:09:32] Sandy Magana: But many adults as they become advocates for themselves are saying, no, I want to own the autism is part of me. That’s part of my identity. You can’t take that out of me. That’s part of my personality, my behavior and I embrace that. So I’m autistic. I’m not a person with autism.

[00:09:51] Sandy Magana: And so some people feel really strongly about that. And then there are other people who I may have to be respectful of where people are and what they want to use. Some people would rather use person first language, many family members and parents prefer that. But many of them self-advocates are becoming more empowered, tend to use that identity first language.

[00:10:13] Karma Chavez: I really appreciate you taking the time with that, because I do think that is something that people struggle around again with kind of the wanting to get everything right. Kind of culture. So thank you for taking that time. So how prevalent is autism spectrum disorder in Latino?

[00:10:30] Sandy Magana: So that’s an interesting question, prevalence, right? Because there really is no way to determine actual prevalence. It’s not like a blood test you can do. Usually autism is determined by a number of behavioral measures and observations that might be done to observe certain characteristics.

[00:10:50] Sandy Magana: I personally don’t believe that autism is less or more prevalent in the Latino community than in the white community, but if you look at prevalence of diagnosis, then there are some disparities there. So in other words, getting to a diagnosis of autism is a labor intensive process that families have to go through and expensive.

[00:11:12] Sandy Magana: And so if you don’t have the resources to get to the right clinic, that knows how to diagnose autism, your child may be unidentified and yet still be autistic, right? And so in the Latino community, there are significant differences in terms of identification of autism, where they’re under identified, compared to white children. The CDC has done surveillance studies. They do them every few years. And I can’t remember what the number is now because it keeps changing. I think it’s one in every 57 children. And it’s more like at 1% for Latino children in terms of diagnosis. But again, I don’t believe that that is actually prevalence.

[00:11:51] Karma Chavez: Well, and part of that of course, is because of the use of the term spectrum, right? So there’s this, as you mentioned, a spectrum of behaviors and, uh, communication patterns, et cetera. Might be a part of autism spectrum disorder, but you know, some of the things you were describing, I was thinking, well, some of my friends who have, uh, obsessive compulsive disorder, for example, uh, exhibit those same behaviors.

[00:12:16] Karma Chavez: And so that that’s probably in general, what, what can make that challenging? Is that fair to say.

[00:12:21] Sandy Magana: Absolutely. Yeah. A lot of people with autism overlap with ADHD as well as obsessive compulsive disorder, but what they have to have is criteria in both the communication part and the restrictive repetitive part of it. So they may also overlap with those issues as well.

[00:12:40] Sandy Magana: Yeah. And it’s a spectrum. I just want to think about the spectrum in relation to Latin X children, is that a lot of times Latino children only get access to services when they are severe. And so if you’re on the end of the spectrum where maybe you don’t need a lot of support and services.

[00:12:58] Sandy Magana: You appear to be functioning normally, but you are having some challenges. They’re less likely to get identified among Latino children. Whereas white children tend to be much more heavily identified in that end of the spectrum.

[00:13:10] Karma Chavez: Yeah, that makes a lot of sense. And so you’re actually pointing right to the next question I was going to ask. So you’ve named, uh, the question. Yeah. And you also named the question of poverty and material resources, but what are some of the other disparities that Latino families face vis-a-vis white families when trying to access care related to autism spectrum?

[00:13:32] Sandy Magana: Well, a big one for Latin X families is language barriers. Obviously not for all but for many families that’s an issue. And I would say too to access services, immigrant families who’ve may have mixed immigration statuses within their families, maybe afraid to seek out those services for their children, because they’re afraid they’re going to be identified by Border Patrol. I think there was a lot of fear during the previous administration where use of services was going to be something that was used against people in their immigration applications and stuff.

[00:14:04] Karma Chavez: And so I think people might be able to imagine this, but I’d like to hear from you, what are the, in the material impacts of this kind of disparate treatment over the course of time, say over the course of, of childhood.

[00:14:16] Sandy Magana: no, that’s a really good point. I think that what often happens is the children don’t get access to services that might help them develop their communication might help them function in their school systems, help them succeed, not only academically, but just developing social skills and things like that. They would not get access to those services and they might get lumped together in a group of special ed students and not really get specific supports that they really need.

[00:14:44] Sandy Magana: And then, you know, when they get to that transition age, they’re supposed to be services in the school system where youth are prepared for what happens after school services end, right? Employment and independent living and things like that. And we’ve talked a lot of Spanish speaking, Latinx families where they didn’t even know that schools were mandated to provide transition services.

[00:15:07] Sandy Magana: They didn’t know what transition even meant. And sometimes they were convinced to have their child graduate at 16 or 17 when they could have gone to 22 and got more specialized services and then it’s too late. So a lot of missed opportunities happen.

[00:15:24] Karma Chavez: One of the things that I’m wondering. And I don’t know how much connected to your research, but as you’re talking, it makes me think that there must be then a relationship, at least in some cases, partially because of racism. But then also because of this health disparity, when kids get to a certain age, potentially getting wrapped up in the carceral system because they have communication issues.

[00:15:48] Karma Chavez: Is that something that you’ve seen or is that an issue?

[00:15:53] Sandy Magana: Absolutely. I think this is a big concern that families have brought to us, especially even as they become adolescents, they do run into interactions with the police. The police don’t understand where they’re coming from and I think for black and brown children, this has been really challenging.

[00:16:09] Sandy Magana: There have been some reports. Of youth being killed by police because maybe they said stop and the person didn’t really understand what they meant by that. And didn’t respond and things like that have happened in parents are very worried about it.

[00:16:23] Sandy Magana: I’m not a up on the research in terms of, um, the prison system, but I do know that a lot of people with intellectual disabilities do end up in the prison system. And even in Texas, there there’ve been many who’ve been executed who had an intellectual or developmental disability.

[00:16:39] Sandy Magana: And when they’re legally not supposed to be, even in Texas.

[00:16:43] Karma Chavez: Right. Even in Texas. Um, so you, you you’ve

[00:16:48] Sandy Magana: I was going to say they get around it by playing with the definitions and stuff like that. Playing with the IQ numbers and

[00:16:56] Karma Chavez: Right. Yeah. And such long histories of these connections, of course. Um, and some really good work out there too, about disability in the prison system, the out them in Russia. Um, so you’ve given us a lot to think about here and we’re going to, uh, wrap this up here soon, but I guess what I’m interested in then with all that you’ve told us who are the different actors that can intervene in these disparities and move us toward equity.

[00:17:24] Karma Chavez: And what can interventions look like to actually get towards equity that people are driving right.

[00:17:32] Sandy Magana: That’s a really good question. I like to think about intervention sort of on the micro , mezzo, and macro level sort of going from families to the society. Right? I think it’s important to have interventions at all of those levels. We do a lot of interventions focused on empowering parents and families of children with autism and teaching them advocacy skills and how to advocate for their children, because a lot times they don’t even know their child has certain rights in the systems and really teaching that on an individual level. But then I think a lot of schools do not have the services or training to provide adequate interventions for children, autistic individuals.

[00:18:15] Sandy Magana: There’s a lot of evidence-based treatments out there that they have shown to be effective. Many schools just don’t have people trained in those. So that kind of training and sort of requiring that in the schools would be super important. I think at the macro level, I’ll just give you one example.

[00:18:34] Sandy Magana: Um, one of the evidence-based practices is called applied behavioral analysis. Now many autistic individuals completely disagree with the premise of applied behavioral analysis, because it does come from this behavioral sort of approach, but there’s a lot of research showing its effectiveness in a more sort of naturalistic setting. In not being as rigid as maybe it has been delivered in the past, but in the state of Texas the only people that can get applied behavioral analysis are those that have resources can pay out of pocket or have really good insurance, um, private insurance, so Medicaid children can not get it.

[00:19:11] Sandy Magana: And that’s true in Illinois where I just came from this year and in Texas. Um, and so that’s an example of a macro issue, right.

[00:19:18] Sandy Magana: So how do we reduce the disparity of children getting evidence-based treatments? We need legislation. So actually two years ago, the Texas legislature did vote for Medicaid to cover it.

[00:19:30] Sandy Magana: It hasn’t been implemented yet though, and I’m not sure what the barriers are there. So, so that’s a macro issue that in terms of a policy that could reduce some disparities in a particular area.

[00:19:43] Karma Chavez: Well, as so many of these things are they’re massive and You’re talking about, of course, points to funding. And that it’s good there’s grant funding to support PODER and other research-based programs. But the implementation side is always the challenge in a low last episode, we were speaking with professor Parra-Cardona about implementation science and what implementation looks like.

[00:20:07] Karma Chavez: And so it seems like that’s very relevant to our conversation here.

[00:20:11] Sandy Magana: Absolutely. Yeah.

[00:20:13] Karma Chavez: Yeah, well, we are running to the end of our time together today so thank you so much for being here, professor Magaña.

[00:20:21] Sandy Magana: Well, thank you so much for inviting me. I really enjoyed it.

[00:20:24] Karma Chavez: And again, our guest today was Dr. Sandy Magaña professor in Autism and Neurodevelopmental Disabilities in the Steve Hicks school of social work. I’m your host Karma Chavez and this has been Latinxperts.