Erna Imperatore Blanche, Jesus Diaz, Tanya Barretto, Sharon A. Cermak; Caregiving Experiences of Latino Families With Children With Autism Spectrum Disorder. Am J Occup Ther 2015;69(5):6905185010. https://doi.org/10.5014/ajot.2015.017848
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OBJECTIVE. Prior research has documented caregiving difficulties in families of children with autism spectrum disorder (ASD). However, Latino families may encounter unique challenges. The purpose of this study was to understand the caregiving experiences of Latino families with children with ASD, including daily activities, coping strategies, and service utilization.
METHOD. Fifteen Latino parents of children with ASD were interviewed. The interviews were transcribed for analysis to identify themes of experiences unique to this population.
RESULTS. Latino families of children with ASD encounter many similar issues as non-Latino families but also unique issues that affect service utilization. Four themes were identified: dealing with the diagnosis, dealing with stigma and isolation from family and community, understanding the role of mothers in changing family routines, and utilizing services.
CONCLUSION. To meet the unique needs of Latino families, services need to be provided in culturally sensitive context that address children’s needs within family units.
Dealing with the diagnosis
Dealing with stigma and isolation from family and community
Understanding the role of mothers in changing family routines
It wasn't really . . . in my head until I talked to [my sister-in-law] when Hilary was like a year and a half . . . when I noticed she wasn't talking. I said, “You know what, Hilary is not talking. . . . I remember that you had said that David wasn't talking.” She said, “You gotta get her evaluated. Go to the regional center.”
[She said,] “I know your son . . . and there's just something not there. Go get him diagnosed.” [I said], “Okay, fine.” [She told me when he was 2], and I said let me wait ‘til 2 and a half. And if within 6 months [something] is coming up, then I’ll go ahead and get him diagnosed.
This is a disorder that obviously there is no cure for it. Not that there can't be healing. I do believe in the power of God, and there may be healing. . . . I have hope, and I tell him [my son], “You're gonna get married, and you're gonna go to college and have children and have a career.” . . . I know the Lord has a plan for his life, and I know that he created who he is for a reason. He has a purpose.
So, yeah, I was like, like, very isolated. . . . just with the girls at home. . . . I can't do nothing. Hannah is always crying, every day. . . .Yeah, I don't really visit them [extended family] anymore. I'll visit my grandma too, but [she says], “You gotta give her some little spanking so she could understand.” No, no, no, no, no. Oh, whatever. I'm not going to go there anymore.
It's tough. [Relationships] do change. . . . I don't recall the book, but I do remember the parents’ suggestion that the dynamics with your relationships will change with people who you were close to, and I thought, no, my friends are good friends. And it has nothing to do with them being good or bad; it just has something to do with that sense of are you going to match up any more socially? If your child doesn't match up socially, that's what creates that uneasiness.
We don't go to the restaurant without reading the menu first. We know what we’re gonna order before we get there. We have a bag of tricks, you know, we’ve got stickers, we’ve got crayons, so we’re not going to have like this long dining experience. We’re going so she [our daughter] has the exposure. We’re gonna eat. She’s gonna have a meltdown; she’s gonna throw stuff everywhere. We’re just gonna have to deal with it. My husband cannot deal with that. It just . . . freaks him out.
He said, “What happens is that the child is spoiled . . . he is the baby in the family, that is the reason he doesn’t talk.” . . . He has always said I am hardheaded, and he said, “You already have the idea in your head and will not stop until you see what happens.”
But as far as dressing him, we [my daughter and I] get ready for work, and my daughter is the one that gets him ready and she's the one that takes him to school. . . .We both work, but Grandma is here and waits for him and on Fridays my daughter is the one that's here, but once we're here, it's like all of us.
My mom is probably the only person we see on a weekly basis. And for her it's still, I don't know if it's because of his [my son’s] age, that she thinks, “Oh, he'll grow out of it. …” My husband gets annoyed by it and I used to too but it's exhausting to try to keep up with her feelings too.
As part of restructuring the family routine, mothers sometimes reported having to leave their jobs to respond to the additional needs of a child with ASD. Alicia stated, “You know what, I can't do this anymore. I can't take it anymore. I think I'm going to have to stop working before I go crazy!” and I was trying to battle everything, and I told my husband. . . . “You know what, today's my last day of work!”
I said to my husband, “You know that the school assistant says this and this and this.” “I think so,” says my husband, “because Nathan is not normal. I think he has something; maybe he has the autism.” I say, “Well, I don’t know.” It never occurred to us to read the papers that the regional center gave us, [which said to return in a year for further assessment]. And a year had gone by, and we had never read the papers.
So they gave me some papers at school saying something about education, a guidebook on special education, and I said, “[What is this]? My child is not special; why are you giving me this?” They said, “These are the papers; sign them.” . . . I signed them.
When we got the diagnosis, there was a time period of educating and letting people know this is what it is. The material that I was given was pretty much all in English. I have researched and tried to find a book in Spanish, but I haven't had luck. I mean, I've found a few, but the excerpts that I've read . . . don't satisfy me.
Latino families document many similar caregiving challenges as non-Latino families, and these challenges related to ASD should be routinely considered in occupational therapy through delivery of family-centered care.
To provide Latino parents with the necessary tools to help their children, service providers need to understand the distinct roles of family members in caring for and supporting the child with ASD.
For Latino families in particular, it is critical to offer educational opportunities to the extended family because the extended family may form a key component of the family structure.
Occupational therapy practitioners must understand the concepts of health literacy and how the health literacy of their clients affects the services being delivered.
Occupational therapy practitioners must ensure that parents fully understand the information provided, not only through the use of temporary interpreters, but also through ongoing interaction. Written material might be unread or disregarded and is not a substitute for an accompanying verbal explanation and ongoing consultation. Best practice would ensure providing follow-up information and appointments.
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