Daniella and her husband have a young son they think might be on the autism spectrum or have developmental delays. Her parents have a hard time overcoming outdated stigmas about cognitive differences. And a pediatrician who studies healthcare in Latino communities speaks with Juleyka about how to support loved ones who are different.
Our expert this week is Dr. Katharine Zuckerman, a primary care pediatrician and an associate professor at Doernbecher Children’s Hospital and Oregon Health & Science University in Portland, Oregon. She recommends the CDC's Milestone Tracker and the Autism Self Advocacy Network as resources for parents. If you loved this episode, be sure to listen to Dad's Mental Illness, On His Terms, and When They Want a Wedding and Grandchildren But You Are Not Ready.
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Hi, everybody. Hey, hey, new listeners. Today, I’m speaking with Daniella. Daniella is a new mom to a toddler son. He’s too young to be officially diagnosed yet, but she thinks he may be on the autism spectrum, or at least have some developmental delays. Her parents, who are first-time grandparents, are not taking the news so well. Daniella wants to help them understand what this all means and how everyone in the family can best support her, her husband, and their son. Let’s get into it.
Daniella Suárez Boyd:
So, my name is Daniella Suárez Boyd. I am 33 years old. My pronouns are she/her/ella. I would describe myself as a first generation estadounidense and college graduate. The oldest of three kids. I am currently an instructional coach at a high school in South Florida and I also teach high school math while working on my doctorate, being a wife to my wonderful partner, and raising a biracial, bicultural, and bilingual toddler, while expecting child number two next year.
So, growing up, my mom, we call her mama, or mama sometimes. My dad’s nickname is “Spee”, and we say it’s because he’s very speedy. So, one of the biggest struggles I guess for me in becoming a mother myself was just I heard all these stories about how I met my milestones so easily, I was reciting my ABCs at a young age, I knew how to differentiate colors at a young age, and I kind of felt a lot of pressure for my child to be the same way. And it was like this unspoken pressure and I know my parents often don’t mean anything by it, but they see my kid and they bring up stories about me, and how I used to do things, and whatever else, and so I put that pressure on myself and I don’t think it was very fair, because I’m an educator. I know that children don’t all learn the same way. I know that they show different intelligences in different ways.
So, for me, that was the biggest shock, in a sense, was when my child was not meeting certain milestones. I felt that… So, I had this sense of guilt. I needed to feel as though I wasn’t the only one going through it in order to move past it. I needed to know that I wasn’t alone, but I also needed to feel heard, and I did not feel heard by my child’s pediatrician. I kept insisting that there was something that was there. I obviously had no explanation for it, and I wanted a thought partner, and I wanted to see what we could do to support my child. So, I think once we started exploring options for my child, that sense of guilt started to evaporate from my mind in a sense, because I felt justified in the way that I was feeling, and I felt justified in knowing that it was outside of my control, but it could be within my control if we got the proper interventions to support my child. And it wasn’t that there was anything wrong with him, it’s just that he needs a little bit of extra help. And so, what extra help does he need, who does he need it from, and how can we get it to him?
A lot of the early thought process into thinking about how we were gonna support my child was just between me and my partner, and then we obviously knew that we had to tell my family. You know, they live very close to me. They’re first-time grandparents. Everything that their grandchild is doing is fantastic to them. So, to have this conversation with them, like, “I think there might be something there with my child,” they were freaked out. They were. They became instantly concerned. My parents are very conservative, very… They have a relationship with Christ and so they believe a lot in the power of prayer and whatnot, and so they instantly, like, “Okay, we’re gonna be praying. We’re gonna be doing this.”
And that kind of like made me nervous. I think that was the first thing that I needed my parents to understand, was this is nothing for us to be… It’s not a life or death situation. It’s something that we just… We need to keep calm, and so that we have a level head on our shoulders when we’re making decisions about how to move forward with my child. Yes, he is developmentally delayed. He’s still not speaking complete words like most kids his age are, but what we should concentrate on, what was told to us was that he has some deep sensory issues, so he has a lot of sensory sensitivities, and because he is not even two, he’s gonna turn two in January and is very young to diagnose, it is… We’re not sure if he is on the spectrum, if he has some sort of autism, or if he has a sensory processing disorder.
When I initially brought up that I thought my child might be exhibiting some signs of autism, that was just like so devastating to my parents, and you know, I’m thinking about it right now and I can feel myself even tearing up, because it was just… It was very difficult for them to hear. They were telling me like, “M’hija, don’t be sad, don’t be this.” And I’m like, “Guys, I’m not sad. You guys are the ones who are sad, so you need to admit that to yourselves. You need to admit that you are the ones who are sad. You have to work through that, because we can’t remain there, right?”
And I had to just… I still do on a weekly basis have to remind my parents that I’m not sad, I’m hopeful. I’m hopeful because we’re doing the right thing by getting my child early intervention. And that autism is not a death sentence. An autistic person can be a highly functional member of our society. We need to empower them. We need to teach them coping skills, and regulation skills, and advocating for themselves, and that’s what we gotta focus our energy on, right? Like not feeling bad for ourselves, not feeling bad for our kid.
So, we still struggle with that in terms of my parents fully understanding. They still ask like is it a possibility that he has autism, and our specialist says it’s still a possibility. We cannot rule it out. And I just see it in their faces, like I just see a look of defeat on their faces, and you know, I do believe that a lot of it is because talking about things like this still seems taboo in a lot of older Latino/Latina communities. They think of it in a different way than we do. They see it as a deficit. So, for me it’s still something that we’re grappling with, we’re wrestling with, and my husband and I check in on this all the time, so that we know that we’re on the same page. We know that we’re on the same page in terms of how we talk about our child, because that is gonna set the tone about how other people talk about our child, as well, including our own family members.
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As a fellow mom, I was really fortified by Daniella’s story of advocating for her son with her family, by her determination to uplift him, and by her work of bringing her parents along. In a way, I get it. When my niece was diagnosed with Down syndrome over 20 years ago, it was hard for some of my relatives to talk about it. In part because many of them were so unfamiliar with disabilities and cognitive differences. To help all our families learn and figure some of this out, I called in an expert.
Dr. Katharine Zuckerman:
My name is Dr. Katharine Zuckerman. I go by Katie. I’m a primary care pediatrician and an associate professor at Doernbecher Children’s Hospital and Oregon Health & Science University in Portland, Oregon, and as part of my job I do research on healthcare disparities and access to care for children with disabilities, and I have a particular interest in autism spectrum disorder and also the Latinx community.
Tell me what you heard as you listened to Daniella’s story.
My first impression was that the experiences that Daniella was experiencing are so common, and I hear so often, both from my patients and also from families I talk to in our community here in Oregon. For her and also for other parents out there who feel like parenting and discussing their child’s disability with family and community members, it’s really important to know that it’s really challenging, and it’s especially challenging when you’re trying to parent across a cultural divide, and that even though sometimes it feels like you’re alone, you’re not alone. And that there’s lots of parents going through similar issues.
All right, so I’m gonna ask you probably something you get asked all the time. Can you just very clearly help us understand, what does it mean to be autistic or what does it mean to have a child who is on the spectrum?
So, children with autism or autistic children, depending on how you want to say it, have two main challenges. One is a challenge at social communication. How you interact with other people and kind of the quality and quantity of those interactions, and so a child with autism who’s very young like Daniella’s child might not be talking very much or might not be using eye contact very much to talk with people. One of the earliest signs of autism in toddlers is not pointing at things to show people.
The other key feature of autism is restricted or repetitive interests or behaviors. And so, a child might be very strongly interested in one or two things, but not be very engaging when you’re not interacting on those things. So, for instance, a child might be really interested in Thomas the Tank Engine and know every single episode, but if you try to talk to him or her about some other topic, might not really engage in conversation at all.
So, I always like to, though, talk about that children with autism are really good at certain things, too. So, for instance, they’re really good at noticing little details. They’re really good at finding patterns in really complicated systems. And they often are very perceptive and notice things that other people don’t notice. And so, raising a child with autism comes with a set of challenges, but it also comes with a lot of really great and inspiring benefits, too.
So, part of what Daniella is dealing with is that often in our parents’ native countries, many of these diagnoses were never made, and that they may have grown up with people who were cognitively different, but because there was never an official diagnosis, people didn’t have the language or the knowledge with which to speak about this, and so a lot of the times, they’re coming from a place of fear in that they think that their child, their grandchild, will not develop well, will not be self-sufficient. So, can you talk to us about what it is like to grow up being autistic and what the medical science tells us about that progression?
So, I want to touch on what you first said, which is that a lot of grandparents didn’t experience disability the way that parents and children experience it now, and I think that’s a really important thing to remember when you’re talking with your parents about your children, that disability is much more common now than it used to be. Part of that’s just that there are more children with disabilities, because children with risk factors are surviving, and so more premature infants, for instance, and that puts children at risk for autism, for instance.
But the other part of it is just that we’re better at recognizing the disability that was always there. So, you know, one in six children has a communication disability, and one in 54 children has autism, and when families talk about how common disability is, it really helps destigmatize it and many children who experience disability in early childhood now are gonna do great. Many of them will grow out of it. And many of them will go on to be in mainstream schooling and do fine. And even if this child does have autism, as she very eloquently states, autism is not a death sentence. It’s not cancer. That there are people with autism in all walks of life right now, living independently, working at jobs, making unique contributions to society.
I don’t think that autism is something that we need to fear in children or feel sorry for them about. It’s just a set of challenges that these children come with, but the truth is that all children have one kind of challenge or another.
So, Katie, the question that I wanted to ask you after that, what are your recommendations for the extended family? Beyond the parents, once they get a diagnosis for autism, how can the rest of the family support the parents and that child?
So, I think there’s a couple things. I think it’s really important for the whole family to embrace the idea that early treatment for autism and other disabilities is really important and it really helps. The reason why children can learn three languages at a time or can learn to ride a bike in like a week, is that children’s brains are really flexible, and they can learn things that would be really challenging for an adult. So, the sooner we start, the more successful we’re going to be, and if the whole family can engage in that process, and not doubt that process, and work together with this child, that’s gonna help the child the most.
One issue that often comes up, particularly in immigrant families, is the issue of bilingualism and language delay. Often grandparents, or even parents, and honestly sometimes even doctors, think that if a child is learning two languages, that that’s gonna impede their English language learning, or that if they have a disability, it’s gonna make that disability worse. Bilingualism is actually good for kids, and so parents and grandparents should talk to kids in the languages that they feel most comfortable with, because they’re going to use the richest vocabulary and be the most expressive in those languages, and not worry about that when they’re raising their children.
Oh my God. I’m so happy you added that.
Yeah, because it comes up all the time. It’s like this huge urban legend.
All right, now let’s talk a little bit specifically about your research in the Latino community, and how they conceptualize and understand autism. What have you learned?
Well, I think that one of the most frequent things that I find is that the families who are from Latinx background really struggle to access autism care, and some of it is for these reasons that we just discussed. Cultural differences, mental health stigma, but part of it also is lack of knowledge about the condition. So, we did a large survey of low-income parents of children who were just going into WIC clinics, which are nutritional clinics for children. We asked them, “Have you heard of autism?” And what was really interesting is that a substantial minority of Latino parents who spoke Spanish had never even heard of the disability.
And it’s not all on the parents, and Daniella brought this up too, which is that when she talked to her pediatrician, her pediatrician didn’t share her concerns. That’s wrong, because we know that parent concerns about their child’s development are almost always correct. Pediatricians often don’t listen to parents when they come in and have a concern about their child’s development, even worse when a family is from an ethnic or language minority group, and so I do think it’s on us as doctors to do a better job listening to all our families.
And also, parents unfortunately need to remember that they really need to advocate for their child. You need to speak up for your kid and ask for things, and sometimes ask multiple times, and I think that unfortunately sometimes doctors or educational providers might perceive that parent as being pushy, or ill informed, and not take those parents’ concerns as seriously. And that’s a concern for us as professionals, because we really need to have equity in how we’re addressing these really important developmental concerns early in childhood.
Okay, so I know that there are lots of resources. Can you share some of those that might be accessible to our listeners?
Sure. So, a great resource for parents who might be wondering if their child is delayed, or has a disability, or has autism, is the US Center for Disease Control and Prevention has a website and has free tools on it for parents called Learn The Signs, Act Early. And these have developmental checklists for children age zero to five, and it’s a great way where you can go online and see if your child is developing similar to other kids or is developing a little bit differently. They also have an iPhone app you can use.
You could bring it to your doctor’s appointment and say, “Hey, I’m worried about my child’s development, but it’s not just me that’s worried. Look, I filled out this checklist from the CDC.” That can be really powerful for parents when they’re talking to doctors or other providers.
The other thing is that in the U.S., services for children under age five with developmental disabilities are available for free in early intervention and early childhood special education programs. You do not need to ask a doctor or a teacher to refer your child to the program. You can refer your child yourself and those programs are available in every county in the U.S. If you just Google search your state and early intervention program, a website will come up and should have contact information.
Dr. Katie, thank you so much for coming on.
Oh, you’re so welcome.
All right, let’s recap what we learned from Katie. Point out how common this all is. Disability is much more common today than when our parents grew up. We have better diagnostic tools, better educational and developmental support, and people who are differently abled are all around us living full lives. Emphasizing this, as well as the resources and information we can easily access, can help destigmatize it for our concerned relatives. Advocate for your child. To support kids with cognitive differences, everyone in the family has to get on the same page. Your role as the parent is to identify who is ready to be there for you and your child and who’s not. And remember, you’re not alone. There are tons of resources, groups, books, podcasts, individuals, and families ready to share their experiences and their wisdom. You just have to reach out.
Thank you for listening, and thank you for sharing us, and thank you for coming back week after week. How to Talk to [Mamí and Papí] About Anything is an original production of Lantigua Williams & Co. Virginia Lora produced this episode. Michael Castañeda mixed it. Micaela Rodríguez is our founding producer and social media editor. Cedric Wilson is our lead producer. I’m the show’s creator and host, Juleyka Lantigua-Williams. On Twitter and Instagram, we’re @TalktoMamiPapi. Please subscribe and rate us on Apple Podcasts, Amazon Music, Spotify, or anywhere you listen to your favorite podcasts. Bye, everybody. Same place next week.
Lantigua-Williams, Juleyka, host. “Mom Has to Teach Grandparents to Accept Her Son's Difference.” How to Talk to [Mamí & Papí] About Anything, Lantigua Williams & Co., November 30, 2020. TalkToMamiPapi.com.