Understanding stress in parents of children with autism spectrum disorder: a focus on under-represented families

Abstract

Objectives: Parents of children with autism spectrum disorder (ASD) report high levels of stress that can interfere with important child and family treatments. Limited past research considers how the caregiving experience and social determinants of health may contribute to treatment engagement and outcomes, particularly in underrepresented families, who already experience service and health disparities. We aimed to assess the experiences of caring for an individual with ASD, with specific emphasis on perceptions of stress.

Methods: Three key informant interviews were conducted with parents (n = 1) and providers (n = 2) of children with ASD to refine interview guide questions. Once questions were refined, four focus groups (n = 17) and one key informant interview were conducted with parents of children with ASD who were (a) non-white, (b) Spanish speakers, (c) of limited financial resources, and/or (d) living in rural counties. All participants lived in Western New York, with the majority residing in Rochester. Content analysis by two independent coders was used to identify and refine themes.

Results: Themes included: (a) caregiving for an individual with ASD can cause interference with family functioning, (b) misperceptions of ASD contribute to caregiver stress, (c) culture contributes to stressors for parents, and (d) service navigation difficulties are a significant source of stress. Suggestions for interventions to address parents stress included: modular and integrative treatments for multiple content areas, addressing cultural barriers to treatment engagement, and education on ASD to the community.

Conclusions: Parent-focused interventions for caregivers of children with ASD should specifically explore and address service and health disparities for parents, especially those predicated on race, ethnicity, rurality, and language of origin. Interventions should also be individualized to parent characteristics and experiences. In future research on parent training, the unique contributions of caregiver stress and other characteristics (e.g. race-related stress, geographic location) should be included as potential modifiers of treatment.

Introduction

Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by differences in social-communication skills and stereotyped behaviors and/or restricted interests (APA 2013); it has a prevalence of 1 in 68 children (ADDM 2016). Given the developmental nature of ASD symptoms and the importance of early and intensive intervention, parent involvement in ASD intervention programs is crucial to effective treatment (Strauss et al. 2012, Smith and Iadarola 2015). However, experiences of the parent can also have an impact on the child with ASD. For example, one group found that parenting stress actually counteracted the positive effects of some early intervention programs (Osborne et al. 2008), particularly for interventions with a high time commitment. This is especially concerning considering the importance of effective treatment for very young children with ASD. Given the potential interaction of parent caregiving experience (e.g. stress) and intervention efficacy, it is important to consider and address aspects of parent experience in parent training interventions, with a specific emphasis on potential barriers to engagement and success in treatment. Parent-focused treatment programs, such as those emphasizing behavioral management strategies, mindfulness, and psychoeducation, might help protect against negative outcomes (Tonge et al. 2006, Ferraioli and Harris 2013, Feinberg et al. 2014). However, to begin to adequately address the public health impact of parenting stress, interventions must be appropriate and routinely available to parents raising a child with ASD.

Social determinants of health are examples of potential barriers to service access, particularly those related to race, ethnicity, language, geographic location, and income. Despite the development of evidence-based parent-mediated and parent-focused interventions for children with ASD, large clinical trials in ASD have been criticized for their tendency to recruit white, educated, and high-resourced participants (Yee 2016). As such, the results of studies focused on these families may not necessarily generalize to families who are under-represented in the above-mentioned ways. This is concerning, considering the well-documented disparities in ASD for children and families who are black, (Mandell et al. 2002, 2009), Latino (Valicenti-McDermott et al. 2012), and living in low-income households (Maenner et al. 2009).

What is less explored is how disparities in diagnosis, treatment access, and treatment quality may affect participation in treatment for the child with ASD or for the caregiver. Low service engagement, poor attendance, and service attrition related to being non-white or from a low-income family (Gopalan et al. 2010) may arise even in interventions designed for financially under-resourced families of children with ASD (Shire et al. 2014). Non-white parents of children with ASD may experience informational, language, and stigma-related barriers (Zuckerman et al. 2013, 2014). Although these risk factors have been explored as they relate to treatment-seeking for the child with ASD, specific barriers to engagement in interventions focused on parents (e.g. accessing social and therapeutic supports, engaging in valued activities, caring for routine and acute medical needs, stress management) are less well understood but could play an important role in treatment-seeking for parents and their children.

Current study

Addressing parent outcomes in ASD has implications for enhancing parent experiences as well as child outcomes (Smith and Iadarola 2015). However, most of what is known about barriers to treatment engagement relates to upper middle class, white caregivers participating in child-focused interventions. A more comprehensive understanding of the experience of under-represented families is necessary in order to identify appropriate parent interventions that are available and relevant to all caregivers. As these topics are relatively unstudied in the literature, qualitative methodology provides an appropriate framework for an initial exploration of these issues. The goal of the current study was to explore the experiences of parents of children with ASD who were likely to encounter service disparities, with an emphasis on exploration of caregiving stress.

Methods

We aimed to explore parent experiences of stress by conducting four focus groups and one key informant interviews with caregivers of children with ASD, with a specific emphasis on under-represented families.

Participants

Purposive sampling was used, such that all participants were the parent or primary caregiver of at least one child with ASD (child age 18 years or younger). Participants also met one of the following criteria: (1) self-identified as a member of a racial/ethnic minority group; (2) primarily Spanish-speaking; (3) received supplemental government assistance other than Medicaid; or (4) lived in a rural county. Three recruitment strategies were used including (1) flyers posted in our hospital-based clinic serving children with developmental disabilities from a large urban and rural catchment area; (2) recruitment notices posted on the hospital website and associated social media pages; and (3) directly contacting potential participants enrolled in our research registry.

Seventeen parents participated in the study, most of whom self-identified as a member of a racial or ethnic minority (Table 1). We had a high number of parents (n = 6) not report on race; these were mostly Latino parents who did not self-identify with one of the census racial groups. Educational attainment and household income level were mixed, with almost half of parents living below the poverty line.

Table 1. Participant demographics.

Parents	N = 17
Gender
Female	16
Male	1
Marital status
Married	7
Divorced	2
Never married	4
Living with partner	2
Race
Black/African-American	4
Hawaiian/Pacific Islander	1
White/Caucasian	5
Multiple	1
Not reported	6
Hispanic/Latino(a)
Yes	10
No	7
Primary home language
English	10
Spanish	7
Education
Grades 9–11	1
High school/GED	2
Some college	6
College diploma	4
Graduate/professional school	3
Not reported	1
Annual family income
<$10 000	3
$10 000–25 000	5
$25 000–45 000	2
$45 000–65 000	2
>$60 000	3
Not reported	1

Procedure

Research protocols and materials were approved by the University of Rochester Medical Center Institutional Review Board. The research team provided an information sheet outlining the study procedures, and participants provided verbal consent. As a preliminary step, we first conducted three key informant interviews — two with medical providers in our developmental disabilities clinic, who serve many families from our community, and one with a parent of a child with ASD. The purpose of these initial key informant interviews was to refine the questions to be used in the focus group guide, and the data collected were not used in the thematic analysis. The informant interviews also helped address potential researcher bias, by providing outside perspective on what questions were relevant to include. These lasted approximately 30–45 min and included open-ended questions related to treatment-seeking behaviors, barriers to accessing services, and perceptions regarding cultural influences to treatment-seeking. Participant responses were used to develop and adapt the semi-structured interview guide that was used in subsequent focus groups. Participants were paid $15 for the completion of these interviews.

We approached the study’s goals from a phenomenological perspective (Liamputtong and Ezzy 2000), specifically, to understand the lived experiences of under-represented parents of children with ASD. To accomplish this, four focus groups and one key informant interview were conducted at community-based centers. We included parents from different backgrounds and geographic locations to enhance credibility of the findings. One group included Latina mothers (n = 4) and one non-Latina black mother. Another group comprised four black women, two of whom were parents of a child with ASD and one of whom was a great-grandmother (and primary caregiver) of a child with ASD. We conducted a third focus group in Spanish for five parents who indicated this preference. The final focus group (n = 3) was conducted Caucasian parents at a regional resource center in a rural county. The one key informant interview was conducted with a Latina mother living in a rural county; she elected to participate in a one-on-one interview rather than a focus group due to transportation difficulties.

The first and second author served as the primary facilitators. One was a pediatric psychologist with 15 years’ expertise working with children with ASD and their families. The other was a senior research project coordinator with expertise in population health and who was working toward a degree in Public Health. Their various backgrounds encouraged unique perspectives on the data and helped address potential researcher bias. The Focus groups included a facilitator and a co-facilitator and lasted approximately 2 h. When necessary, additional co-facilitators were included who were racially, ethnically, or linguistically matched. Facilitators followed a semi-structured interview guide that contained questions related to (a) community and cultural perceptions of ASD; (b) factors affecting parenting stress; (c) utilization and barriers to self-care; and (d) desired characteristics of an ideal intervention program to address caregiver stress. For the Spanish group, all materials (e.g. measures, focus group guide) were translated into Spanish using standard translation procedures. Open-ended questions were followed by more specific prompts to clarify and explore participant responses. Participants were paid $20 for completion of the focus groups. Groups were audio-recorded and then transcribed by a student who served as the primary transcriptionist for many qualitative research projects.

Analysis

The first and second author served as coders; this triangulation of raters was used to enhance credibility. Data were analyzed using grounded theory analysis (Liamputtong and Ezzy 2000). The raters first independently conducted line-by-line open coding of the transcripts, to inform the development of preliminary categories. After coding each transcript, the raters discussed any discrepancies, refined the categories based upon those discussions, and synthesized the categories in a codebook. Discrepancies were resolved through (1) returning to the original transcripts to re-read the relevant section, (2) discussing rationale for each rater’s perspective, and (3) coming to a consensus regarding the appropriate categorization. This iterative process was repeated, such that new codes were continually checked against the codebook, and the codebook was refined accordingly. Supporting quotes were organized based upon the categories and, subsequently, broader themes included in the codebook. Upon completion of coding all transcripts, the categories were consolidated into overarching themes, as well as subthemes when indicated. Subthemes emerged when raters independently identified clear grouping of codes that occurred within larger themes.

For the Spanish group, transcription, coding, and thematic analysis was done in the native language (Spanish) by a certified translator and native Spanish speaker. This individual also had formal training in qualitative methodology and analysis. The open coding for these transcripts was completed in Spanish, and findings uniquely associated with this Spanish group were incorporated to the rest of codebook. Quotes were translated into English and then back-translated. Themes were translated into English and merged with existing themes previously identified in the other groups. This process contributed for a better external validity and a more cultural relevance of the interviews (Temple and Young 2004, Lopez et al. 2008).

Results

The data analysis resulted in the identification of four main themes: (1) raising a child with ASD interferes with family relationships and activities; (2) misperceptions of ASD (e.g. symptomatology; best approaches to intervention) are prevalent among family members, schools, and medical providers, and these misperceptions contribute to parent stress; (3) background (including race, ethnicity, and language of origin) can contribute to understanding of ASD and service access; and (4) systems-level factors affect parent experiences and access to services. Themes, subthemes, and supporting quotes can be found in Table 2.

Table 2. Results organized by themes, subthemes, and supporting data.

Theme	Subtheme	Supporting quotes
Raising a child with ASD can cause interference with family relationships and activities, which contributes to parental stress
	Accommodation	It took me three years to get [child] to a baseball game. I took him the first time to the Yankees and it was a disaster. That boy’s over sensory. The next year we went back again and I did not take him all the way in
		Parent 2: Like if you go on vacation you just …
		Parent 1: You have to start to talk three months [early]
	Self-sacrifice	There are moments where … you have to make a choice. Nine times out of ten I can put [child] first
		I decided I had to be at home when my oldest was born and that was fine and I, you know, and I still will probably return to work someday hopefully it will be possible but I feel stress by the fact that okay well is my degree, my degree’s kind of worthless now
		They tell you it’s time for your mammograms and you say, ‘wait a minute, let me see when [child] is scheduled. No, no, no. Tuesday? No I can’t because [child] has this. Wednesday? No because he has OT [Occupational Therapy] after school.'
	Changes in family relationships	You’re more concentrated on your child’s needs and they say ‘You only care about him!’
Stress is strongly influenced by misperceptions and limited understanding of ASD in schools and the community		[People think that] … they’re brats, they’re brats, they’re spoiled
		My son’s father’s mother says it’s behavioral, he doesn’t have autism. She says that he just acts out and you let him do what he wants to do. He’s my only child and they blame a lot on that
		They diagnosed her but they didn’t want to diagnose her with autism, but she had all the symptoms and all the signs
		At least here [in the US] they understand or know what [autism] is. In Puerto Rico no one knew about this. Al menos aquí, (en los EEUU) entienden o saben lo que es (el autismo). En Puerto Rico nadie sabe de esto
		They marginalized him at school. They used to close him in a room during lunch break so he couldn’t go out with the other children. One day I arrived to the school and saw all the children playing, but mine was in a room! Lo marginalizaban en la escuela. Solían encerrarlo en un salón durante el recreo del almuerzo, para que no pudiera salir con los demás niños. ¡Un día llegué a la escuela y todos los niños estaban jugando, pero el mío estaba en un salón!
		That’s what I need people to understand about autism. Yeah there’s a lot of ugly, there’s a lot of hard, there’s a lot of stuff that’s really difficult but our kids are so amazing and wonderful. They really are
Background, including race, ethnicity, and primary language, interacts with multiple dimensions of the caregiving experience
	Racial/ethnic background affects acceptance	Spanish people, we don’t believe in disability and family, my family, my father and my husband’s family in the Irish, they don’t believe that this is a disability. They don’t believe it
		I accept his differences but I just know his capabilities … My family doesn’t believe in that. They’re old school black people and that’s them
		They [members of the black community] do not understand it at all. They would rather not recognize it. They would rather not deal with it, which is why you get a lot of kids in school who have issues when they’re older and in school because the parents didn’t want to address it while they were younger because they see it as being their fault or a problem with them or, you know, them being inadequate in some way. You know, ‘I couldn’t possibly have a child like that.’
		The day I got the diagnostic … I thought that that was it, I’m gonna lock [my child] in a house because that’s tradition you know
		That’s the way we were all trained. Keep your business to yourself; don’t tell anybody your business and that kind of stuff
		I haven’t experienced a lot of cultural issues surrounding autism just because, I don’t know. I feel like I live in a world that’s so mixed up and crazy with so many different cultures and people that it’s, I try to surround myself with people who are positive and accepting
		But I am finding um, not so much culturally but generationally, that’s where, you know, an older generation will look at, you know autism as ‘well you need to better discipline your child,’ or lots of times, and she hasn’t had a meltdown in a long while in public, but like the grocery store or something. You get kind of the side eye …
	Race, ethnicity, and language affect access to services	I think culture does play a kind of, I see people of other cultures doing much better and getting many more services. (Black caregiver)
		The Spanish community … they [white local community] think that a lot of these [Latino] families are looking for a paycheck. They’re looking for assistance
		I’m Spanish and I look stupid with the accent
		There aren’t enough service coordinators that speak Spanish so they can provide orientation to families. No hay suficientes coordinadores de servicios que hablen español, para que puedan orientar a las familias
		I went to [a local adult health group], but since I didn’t speak the language I stopped going to appointments. Fuí a un grupo local de salud (no me acuerdo del nombre), pero como no hablaba el idioma dejé de ir a las citas
Parent experience is influenced by ‘system’ around their child, for better or for worse
	Experiences with providers matters	You start to argue with them and they don’t listen to the parents. I need the doctors to listen to the parents because for years they don’t listen to her [the child] and they don’t listen to you
		I finally had to call and be like, ‘is he getting service?’ Because … and everything’s been chaotic so I haven’t been able to jump on it right away. I was like are you getting services? And I got from [child], yes he is getting his speech … I wasn’t sure about OT, was he doing the reading thing?
	The system is confusing and cumbersome	Okay I got a coordinator; I helped [her friend] to find a coordinator, maybe because our children are going through the transition to be adults, okay? They say this lady is going to help you to find programs for your child. They come to the door, they say ‘sign here’ and then they leave
		To even try to reach out to Medicaid, like to fix it, all I want to do is change this, you reversed a digit. All I need. It took me forever and a day to get through it and I’m not counting on that for every day, like I can’t even imagine the process of other people who desperately need this … and I’m like, this doesn’t even work
		We need a hand holder. I mean someone who is either experienced the process first hand or, whatever the process may be … I think that would be invaluable
	Child care issues impact stress	One time I remember they say ‘we find someone’ and the lady was scared of [child]
		This woman says that she’s got experience taking care of crazy kids. I says, ‘okay thank you very much, have a good day. There is the door’
	Isolation and shared experience are important	It’s hard. It’s hard because you are alone … I’m alone with all these responsibilities
		Finding our own community has really been helpful for me too, and just finding people who are in those kinds of situations. And we all have different experiences but we can also all relate to each other in some way, and I find that has definitely been a stress reliever finding that, ‘Okay it’s not just me and my husband going at this alone’
		So I think it’s good, especially when you can talk to people that have had issues. Even if you don’t say anything, if you just sit back and listen to someone else and you can come up with things that would probably enhance what you’re doing and help you. You know, in dealing with your, with whatever your situation is

Theme 1: raising a child with ASD can cause interference with family relationships and activities, which contributes to parental stress

Parents indicated that they experienced pervasive stress and that this was strongly influenced by the degree of interference in family life that is introduced by caring for a child with ASD. Interference manifested in various ways, including changes in parents’ experiences and lives, and changes in family dynamics.

Subtheme: accommodation

The specific needs of children with ASD can result in either the alteration of typical family routines or the prevention of engagement in family activities. The need to accommodate often stems from core symptomatology of ASD (e.g. sensory sensitivity) or associated behavioral challenges (e.g. wandering). Multiple caregivers described having to change up their family routines in the community. One separated from her family at a group event due to her son’s tendency to run away: ‘I had to be like mom you guys go we’re not even gonna sit with you; I have to get him safe again because he’s just not feeling it.’ In addition to missing out on activities, parents reported the need to provide a significant preparation for upcoming changes.

Subtheme: self-sacrifice

Participants ubiquitously prioritized their children over themselves: ‘There are moments where … you have to make a choice. Nine times out of ten I can put [child] first.’ This resulted in sacrifices, including their jobs, prior interests, and activities. Caregivers acknowledged disregarding their own self-care in the interest of their child (e.g. taking child to appointments, being available for the child, feeling guilty for spending time away from their child). The low prioritization of self-care was especially striking in this group because several participants self-disclosed that they had chronic medical conditions.

They tell you it’s time for your mammograms [as related to the participant’s breast cancer] and you say, ‘wait a minute, let me see when [child] is scheduled. No, no, no. Tuesday? No I can’t because [child] has this. Wednesday? No because he has OT [Occupational Therapy] after school.'

Subtheme 3: changes in family relationships

Parenting stress was associated with changes in family relationships, including those with spouses, parents, and other children: ‘You’re more concentrated on your child’s needs and they say, ‘You only care about him!’ Because I have another child, the twin.’ For many caregivers, tension with spouses arose from discrepancies regarding responsibilities around the house and in the child’s care and from disagreements about parenting strategies for the child with ASD. Some mothers reported being left by the child’s father following the diagnosis or indicated that issues related to the diagnosis resulted in dissolution of the marriage over time. Despite participants generally reporting negative effects on family relationships, one parent highlighted the positive influence of parenting.

She’s had her diagnosis since she was just three, but it strengthened my marriage. We’ve found a lot of strength in, yes there is stresses, but in general I feel that my relationship with my husband has been strengthened since we have this common goal of doing the best for all of our children.

Theme 2: stress is strongly influenced by pervasive misperceptions and limited understanding of ASD in schools and the community

Parents described pervasive misperceptions of the etiology, nature, and trajectory of the diagnosis, which were apparent across different groups within participants’ support network (i.e. family, community, school, medical providers) and for many participants were viewed as related to cultural expectations. Family members and members of the general community were perceived to blame parents for their child’s behavior or make judgments about the child, without acknowledging the underlying disability. When asked about the community’s understanding of the causes of ASD, several caregivers described being blamed for their child’s behavior, due to ineffective parenting. Parents also indicated that people are generally not interested in hearing or learning more about the disorder. As one caregiver described of her mother-in-law, ‘His mother, if I’m on the phone and I want to get her off the conversation I just have to say autism and all of a sudden she’s like “well I’ve gotta go.”’ Another caregiver spoke about what she perceived as a lack of caring in her community: ‘I’m with them. I don’t think they care. Not the family, I’m saying people in general.’

Interestingly, medical providers and educational teams were viewed as having misperceptions of ASD. Parents felt that doctors often attributed red flags of ASD to other conditions and were reluctant to listen to parents’ ongoing concerns. School teams were described as not understanding of the different learning profiles of students with ASD and also having limited training regarding how to teach and manage the behavior of their students.

Parents who had moved to the continental United States from Puerto Rico reported that they had experienced a significant lack of understanding about disability in their schools back home.

At least here [in the US] they understand or know what [autism] is. In Puerto Rico no one knew about this. As a matter of fact, when my child was in Puerto Rico, the principal of the school told me, ‘I will accept your child here but I can’t guarantee a good education.’

‘Al menos aquí, (en los EEUU) entienden o saben lo que es (el autismo). En Puerto Rico nadie sabe de esto. De hecho, cuando mi hijo estaba en Puerto Rico, el director de la escuela me dijo’: ‘Yo admito a su hijo aquí, pero no le puedo garantizar una buena educación.’

Across groups, part of the frustration with misunderstandings about ASD stemmed from perceptions that their children’s strengths are not appreciated by others. Although specific questions about child strengths were not included in the interview guide, caregivers independently talked about the positive qualities of their children. Children’s unique learning styles, progress in learning new skills, and honesty were particularly highlighted. As one caregiver stated,

That’s what I need people to understand about autism. Yeah there’s a lot of ugly, there’s a lot of hard, there’s a lot of stuff that’s really difficult but our kids are so amazing and wonderful. They really are.

Theme 3: background, including race, ethnicity, and primary language, interacts with multiple dimensions of the caregiving experience

Race and ethnicity were salient as related to different aspects of the parenting experience, including acceptance of the diagnosis, access to services, and a preference for privacy.

Subtheme: racial/ethnic background affects acceptance

There were variable reports regarding how background influences the understanding and acceptance of an ASD diagnosis. Some participants felt race and ethnicity were integrally related to how members of their families and communities viewed ASD. For example, black caregivers described people in their community as generally uninformed and unreceptive to ASD, while cultural influences of acceptance were more inconsistently reported within the Latino community. One Latina caregiver indicated that the lack of cultural acceptance has resulted in estrangement from her family. The group of black caregivers more unanimously reported their perceptions of cultural bias in their communities. Many parents felt that this community was showed unwillingness to learn about ASD: ‘They would rather not recognize it. They would rather not deal with it …’

Black and Latina caregivers related a lack of acceptance to the preference for privacy within their respective communities. One Latina caregiver indicated that this affected her ability to reach out for social support from the beginning: ‘The day I got the diagnostic … I thought that that was it, I’m gonna lock [my child] in a house because that’s tradition you know.’ Other parents perceived race and ethnicity as unrelated to acceptance:

I haven’t experienced a lot of cultural issues surrounding autism just because, I don’t know. I feel like I live in a world that’s so mixed up and crazy with so many different cultures and people that it’s, I try to surround myself with people who are positive and accepting.

However, all groups highlighted the contribution of generational differences to understanding and acceptance of disability. Specifically, parents reported that members of older generations are more likely to blame the parents and to question the credibility of the ASD diagnosis. As an example, one caregiver reported, ‘Even my parents’ generation is still a little on the fence with how they react.’

Subtheme: race, ethnicity, and language affect access to services

Caregivers felt that they did not receive the same level of information or education about ASD from doctors or community agencies, as compared to their white counterparts. Prejudice within the general local community was seen as related to racial and ethnic disparities, as well as language barriers (‘I’m Spanish and I look stupid with the accent’). Latino parents in the Spanish-speaking focus group unanimously voiced concerns about language barriers to services for their children. In addition, parents reported that language barriers prevented their own self-care, including medical care.

Theme 4: parent experience is influenced by ‘system’ around their child, for better or for worse

Systemic issues related to the medical system, educational system, community agencies, and state-run agencies were extremely influential for participants’ stress levels. Within this theme, parents described factors that both positively and negatively affected their experience raising a child with ASD.

Subtheme: experiences with providers matters

Prior experiences with providers with doctors, school teams, and service coordinators affected parenting stress and willingness to seek available services. Some parents highlighted negative interactions, especially with medical providers, that stemmed from a perceived lack of respect for parent opinions. As one caregiver reported, ‘You start to argue with them and they don’t listen to the parents. I need the doctors to listen to the parents because for years they don’t listen to her [the child] and they don’t listen to you.’ Frustration with school teams was often associated with a lack of communication about the child’s programming, services, or progress.

Another group more unanimously described positive experiences with their various providers, ‘So yes I appreciate the teachers and the therapist and everybody who works with my son. I think they’re awesome.’ Of note, this group tended to be more connected with specialty providers who had longstanding experience working with children with developmental disabilities.

Subtheme: the system is confusing and cumbersome

Caregivers overwhelmingly reported that the process of accessing and utilizing service coordination through the state was extremely stressful. Many felt that they were not made aware of their ability to apply for service coordination in a timely fashion, nor were they properly guided through the eligibility determination process. Even after children were deemed eligible, parents were still wary of using these services, citing the highly inconsistent quality of service coordinators. Parents were also overwhelmed with a bureaucratic system that they found confusing and inefficient.

Many participants expressed the need for someone to assist them with these processes, ‘We need a hand holder. I mean someone who is either experienced the process first hand or, whatever the process may be … I think that would be invaluable.’ One caregiver emphasized the desire for a knowledgeable person to disseminate information about available services, especially ‘if you don’t know how to ask for what it is that you need.’

Subtheme: child care issues impact stress

Among the various available services, obtaining respite and other child care caused the most stress for parents. Some felt that the state makes it too difficult to access respite services, and even when they were obtained parents generally did not trust that they were getting high-quality child care. Similarly, it was difficult for parents to trust even their own family members to appropriately care for their children, either because family did not offer (or refused) to provide child care or because parents did not trust them to meet their children’s needs. Outside child care services were viewed as prohibitively expensive or inadequate in terms of experience or training.

Subtheme: isolation and shared experience are important

Isolation from friends, families, and communities was a large burden on parents. In the context of this isolation, informal social support was consistently highlighted as protective against stress. Caregivers frequently used words such as ‘community’ and ‘connections’ to describe how they address stress and isolation.

Finding our own community has really been helpful for me too, and just finding people who are in those kinds of situations. And we all have different experiences but we can also all relate to each other in some way, and I find that has definitely been a stress reliever finding that, ‘Okay it’s not just me and my husband going at this alone.’

Even during the focus groups, caregivers often built each other up (‘It’s hard to be you, but you’re so graceful and humble through it though. You’re so calm and you’re such a wonderful caregiver.’) and expressed gratefulness for being able to tell their stories (‘I understand kind of what she’s going through but I feel less stress just hearing your story.’). In addition to the emotional boon of connecting with others, participants reported the practical benefits of sharing experiences and learning with others.

Discussion

Participants, who were under-represented parents of children with ASD, helped provide a richer understanding of their lived experiences, particularly as related to experiences of stress; this inquiry resulted in four identified themes. Unsurprisingly, parents reported high levels of stress, which supports findings that parents of children with ASD report elevated psychological distress (e.g. stress, anxiety, and depression) at higher rates than parents of children with other developmental disabilities (Bristol et al. 1993, Sheeran et al. 1997, Hastings 2002, Hastings et al. 2006).

The theme of family interference is also supported by previous literature, particularly with respect to parents giving up aspects of their previous lives (Tunali and Power 2002) and accommodation for the child with ASD (Gray 2001). However, caregivers described self-sacrifice in greater depth in the current study, extending it to include sacrifice of their prior interests and their own self-care (including medical self-care). Given that the participants may be considered at-risk due to chronic stress as well as potential biological predispositions, this type of pervasive self-sacrifice could jeopardize parents’ long-term health. Preliminary research suggests that parents of children with complex needs, such as developmental disabilities, may experience less favorable health outcomes than parents in the general population, such as CV risk factors (Yamaki et al. 2009), increased BMI (Seltzer et al. 2011), elevated perceived physical pain, and decreased self-reported physical functioning (Tong et al. 2002). These findings suggest a very real risk for poor health and increased health care-related costs in this population, the extent of which is yet unstudied and which should be systematically explored in future research.

The tendency toward self-sacrifice interacts with systemic issues that were reportedly associated with parent stress, such as the importance of prior experiences with providers, the confusing nature of the system, and — as has been noted in previous literature — difficulties securing appropriate child care (Sharpley et al. 1997). For families who already are reluctant to prioritize their own care, additional systemic barriers could further prevent help-seeking behavior.

Issues related to race and ethnicity included a preference for privacy in black and Latino families that deters parents from accessing services and social support, which is consistent with previous research (McMiller and Weisz 1996, Cauce et al. 2002). Additionally, parents in these communities were perceived to receive even less information and services related to ASD than their white counterparts. Specific to Latino families who participated in the Spanish-speaking group, the theme of language barriers was highlighted. While this was not surprising for child-focused services (Zuckerman et al. 2014), barriers were extended to outlets for parent self-care. This latter barrier may be of particular relevance for systemic changes. As more materials about ASD and related services are being translated into multiple languages, child service barriers are slowly reduced. Similar strategies to engage parents of children with disabilities and connect them with providers who speak their native language will be an important consideration for organizations that are looking to best meet the needs of all families. This is especially true given how difficult it is for parents to engage in self-care.

Stigma and biases in the participants’ communities contributed to stress and for some acted as a barrier to receiving services and accurate information about ASD. Racially driven differences in help-seeking behavior and family perceptions that race and ethnicity are barriers suggest that those working with diverse caregivers of children with ASD should explicitly explore and address potential stigma and feelings of discrimination. Doing so may help establish trust and reduce the types of barriers reported in this sample. Historically, these conversations have not been systematically integrated into manualized treatments for this population, although there are some recent developments in this area (Magaña et al. 2017).

In providing treatments that take a culturally humble stance, it is first important for providers to acknowledge the documented racial, ethnic, and socioeconomic disparities that exist within their communities (Kilbourne et al. 2006), particularly as these disparities are also perceived by the parents they serve. Secondly, participants had varying perceptions regarding the extent to which background affected their own experiences of raising a child with ASD. While it is certainly considered best practice to take an individualized approach to each family when treatment-planning, understanding common cultural perceptions (e.g. preference for privacy, uncertainty of ASD as a true disability, parent blaming) may help clinicians more effectively identify and intervene upon parenting stressors and service barriers. For example, research suggests that individuals of color are less likely than whites to receive family-centered care (Montes and Halterman 2011); however, caregivers in our sample reported many family-related issues and stressors that could benefit from targeted caregiver education on ASD and family systems work.

These findings have implications for the development of interventions that both address the self-identified needs of parents and maximize their dissemination to families of diverse backgrounds. Many existing parent training programs tend to focus on one content theme (e.g. general social support, psychoeducation, behavioral skills training, mindfulness, positive psychology). However, parents are reporting multifaceted needs (e.g. sharing experiences, learning about how to navigate the system, family issues, increasing self-care, stress management). As these results highlight, needs are diverse, and it may be difficult to predict what treatment components will be most helpful to what families. This is a broader issue in the treatment research on caregivers; namely, that there is a dearth of mediator and moderator analysis to identify what works best for whom. As such, individualized treatments that match content and style to parent needs and interests are indicated. Interventions that can be highly tailored, such as modular and integrative treatment approaches, have been successful in addressing mental health conditions such as ADHD, depression, anxiety, OCD, and conduct problems (Solanto et al. 2008, Weersing et al. 2008, Kolko et al. 2009, Weisz et al. 2012). A similar approach may be helpful for parents of children with ASD, such as interventions that combine opportunities for informal social support, education about local programs and educational policies, and family systems-based strategies. As a lack of knowledge about the system was particularly frustrating for parents, involvement of social workers or special education advocates in treatment programs may be beneficial.

Limitations and future directions

Findings should be considered in light of the study limitations. The current sample comprised primarily mothers, and therefore the results cannot be extrapolated to represent all caregivers of children with ASD. Given the differences in how mothers and fathers of children with ASD process the diagnosis and stress (Hastings 2003), it will be important for researcher to explore fathers’ experiences with self-care. An additional limitation is our inclusion of Spanish as the only non-English language, particularly given there are other dominant minority languages spoken in our community, including African dialects and Mandarin. Despite these considerations, it is important to reiterate that results from qualitative research are not meant to be generalizable; rather, these data can be used to provide a voice to those who are not traditionally represented in research.

The importance of parent characteristics such as stress, racial/ethnic background, language, and geographic location should be integrated into future research. For example, these factors should be explicitly examined as potential modifiers of parent and child outcomes in parent training. Relatedly, interventions that do specifically target strategies to address relevant parent experiences (e.g. stress, cultural responsiveness) may benefit from assessing the unique contribution of these strategies on parent outcomes.

In addition to further exploring parent experiences through research, it will be important to address participant-reported disparities in how information on ASD is disseminated within under-represented communities. Targeted education for the broader community, rather than just for families of a child with a disability, may help combat many of the misperceptions of ASD (and disability in general) that are prominent in these areas. Previous research in schools has emphasized the importance of a widespread ‘culture of acceptance’ that extends beyond those who are involved in the direct care of an individual with ASD (Myers et al. 2011, Iadarola et al. 2014). As understanding is often a first step toward acceptance, providing basic psychoeducation about ASD may be a good start. One caregiver offered a solution when she suggested that the advertisements about ASD that are common on cable channels also be run on basic cable, ‘A lot of people don’t have cable so they don’t see them on the regular channels.’ Another option is to develop partnerships among academic institutions that are involved in ASD research and clinical services, community agencies, and community stakeholders (e.g. parents, caregivers, faith leaders). Partnerships have been effective both in disseminating information and in developing interventions that are sustainable within the confines of community resources (Taylor et al. 2001, Merriam et al. 2009, Brookman-Frazee et al. 2012). It will also be important to develop strategies to engage parents in educating their own communities, whether this occurs through large-scale sessions or individual interactions with fellow community members. As one caregiver effectively summarized:

And also, too I find that it’s, it’s also about education. And not just a degree or book learning or anything, it’s just how much does someone know about disabilities in general. Like, do you have a world view that everyone is different and some people act differently than you? And if you can be accepting and tolerant of that then I think you view the world with a different lens.

There is strong empirical support documenting service access disparities for children with ASD and support services for their families, based upon race, ethnicity, primary language, and family income. Caregivers from under-represented groups experience high levels of stress but may not seek or be able to access support services in a way that is comparable to white, higher resourced families. Promoting parent engagement in these interventions is one way to begin addressing these disparities, but it requires a deeper understanding of the factors that contribute to caregiving stress in these populations. Some of the relevant themes identified in the current study (e.g. family interference, confusion about the system) are similar to those reported by higher resourced families. Additional themes related to family background provide insight into stressors that are unique to under-represented families (e.g. generational biases against ASD, language barriers, how culture relates to the understanding of ASD). These findings suggest that adequately addressing caregiver needs requires consideration of shared experiences among the general population, as well as experiences that may be distinct to families from low-income or diverse racial and ethnic backgrounds.

Funding

This work was supported by the University of Rochester CTSA award number UL1 TR000042 from the National Center for Advancing Translational Sciences of the National Institutes of Health.

Disclosure statement

No potential conflict of interest was reported by the authors.