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Little is known about how parent health literacy contributes to health-related outcomes for children with autism. This mixed-methods study included 82 U.S. parents of a child with autism 2-5 years-old and sought to describe (1) health literacy dimensions, (2) how health literacy influences services use, and (3) health literacy improvement strategies. Results showed: autism information was accessed from multiple sources; understanding autism information involved "doing your own research"; autism information empowered decision-making; health literacy facilitated behavioral services use; health literacy influenced medication use; family and system characteristics also affected services use; autism education remains needed; services information is needed across the diagnostic odyssey; and greater scientific information accessibility would increase uptake. Findings demonstrate how parent health literacy affects services use.

Children with autism spectrum disorder have a high risk of vision problems yet little is known about their vision care. This cross-sectional survey study, therefore, examined vision care among 351 children with autism spectrum disorder ages 6-17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Vision care variables were vision tested with pictures, shapes, or letters in the past 2 years; vision tested by an eye care practitioner (e.g. ophthalmologist, optometrist) in the past 2 years; prescribed corrective eyeglasses; and wore eyeglasses as recommended. Covariates included sociodemographic, child functioning, and family functioning variables. Multivariable models were fit for each vision care variable. Though 78% of children with autism spectrum disorder had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism spectrum disorder prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Multivariable analysis results demonstrated statistically significant differences in vision care among children with autism spectrum disorder by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism spectrum disorder do not receive recommended vision care and highlight potentially modifiable disparities in vision care.

Parents of children with Autism experience high levels of stress. Resiliency is the ability to cope and adapt when faced with stressful events. This randomized, waitlist controlled pilot trial examines the feasibility, acceptability, and preliminary efficacy of an adapted virtual mind--body group intervention for parents of children with ASD. The intervention was feasible and acceptable. The immediate treatment group showed no difference in distress and greater improvement in resiliency and stress reactivity/coping relative to the delayed treatment group, (M difference 5.78; p = 0.038 and M difference 7.78; p = 0.001 respectively). Findings showed promising feasibility, acceptability, and preliminary efficacy for parents of children with ASD.

This study aimed to determine associations of healthcare access problems with services use among US children with autism spectrum disorder. We analyzed 2011-2014 National Health Interview Survey data on 651 children with autism spectrum disorder aged 2-17 years. There were three measures of healthcare access problems: (1) delays accessing healthcare, (2) difficulty affording healthcare, and (3) trouble finding a primary care provider. There were five service use measures: (1) [greater than or equal to]4 office visits, (2) [greater than or equal to]1 well-child visit, (3) flu vaccine, (4) prescription medication, and (5) [greater than or equal to]1 emergency department visit. Multivariable regression models estimated associations of [greater than or equal to]1 healthcare access problem with each service use variable and effect modification by socioeconomic status and race and ethnicity. Twenty-nine percent of children with autism spectrum disorder had [greater than or equal to]1 healthcare access problem. Having [greater than or equal to]1 healthcare access problem was associated with lower adjusted odds of [greater than or equal to]1 well-child visit or prescription medication use but higher adjusted odds of [greater than or equal to]4 office visits or [greater than or equal to]1 emergency department visit. No significant association was found for flu vaccine. Associations of healthcare access problems with emergency department use were most pronounced for higher socioeconomic status and White, non-Hispanic subgroups. Intervention, such as insurance expansion, is needed to improve healthcare access for children with autism spectrum disorder.

In this study we developed a brief, English/Spanish bilingual parent-reported scale of perceived community autism spectrum disorder (ASD) stigma and tested it in a multi-site sample of Latino and non-Latino white parents of children with ASD. Confirmatory factor analysis of the scale supported a single factor solution with 8 items showing good internal consistency. Regression modeling suggested that stigma score was associated with unmet ASD care needs but not therapy hours or therapy types. Child public insurance, parent nativity, number of children with ASD in the household, parent-reported ASD severity, and family structure, were associated with higher stigma score. The scale and the scale's associations with service use may be useful to those attempting to measure or reduce ASD stigma.

Knowledge of why parents use complementary health approaches (CHA) for children with autism spectrum disorder (ASD) is limited. We conducted a mixed methods study to better understand factors influencing parents' decision to use CHA for ASD. Parent-reported data about CHA use were collected on a probability sample of 352 young children with ASD in Denver, Colorado; Los Angeles, California; or Portland, Oregon. Follow-back interviews were conducted with 31 parents. CHA use was negatively associated with older child age and positively associated with parents' belief ASD has major consequences, living in Portland or Denver, and medication use. Nine themes help explain these results. Study findings may have utility for healthcare providers working with children with ASD and their families regarding CHA.

This study aimed to assess variation in parent beliefs about causes of learning and developmental problems in U.S. children with autism spectrum disorder, using data from a nationally representative survey. Results showed that beliefs about a genetic/hereditary cause of learning/developmental problems were most common, but nearly as many parents believed in exposure causes. Forty present of parents had no definite causal beliefs. On multivariate analysis, parents who were non-White, publicly insured or poor were more likely than other parents to endorse exposure causes, or less likely to endorse genetic causes, compared to other parents. Further research should assess how these beliefs modify health care quality or services use.

Purpose: Neurodivergent children who are part of Indigenous communities in rural areas often have inequitable access to specialized services. Parent education and training programs can be used to help address these gaps in the service system. Yet few parent education and training programs exist for Indigenous parents of children with autism, including parents who identify as Diné (Navajo, meaning "The People"), the largest federated tribe in the United States. The Parents Taking Action (PTA) program is a parent education and training program delivered by community health workers that was originally developed for Latine parents of children with autism. The PTA program has been culturally adapted for other groups, and a growing evidence base exists supporting the program's feasibility, acceptability, and efficacy. We, therefore, sought to adapt the PTA program for Diné parents. Methods: This was a community-engaged case study on how the PTA program was adapted for Diné parents of children with autism. A community advisory board (CAB) comprised of 13 individuals including Diné parents of children with autism and professionals helped guide the adaptation process. We interviewed 15 Diné parents of a child with autism about their needs and preferences for the PTA program and used this information to adapt the PTA program. CAB workgroups used the Ecological Validity Framework to provide input on adaptations needed for the original PTA program materials. We also obtained input on the program's adaptation from Diné communities and a PTA research collaborative. Results: To incorporate the CAB's collective feedback on the PTA program adaptation, we modified terminology, visuals, and narratives. From the parent interview findings, we reduced the number of lessons and enabled community health workers to deliver lessons remotely. We further integrated feedback from the CAB workgroups in the adaptation of specific lessons. We addressed feedback from the larger community by expanding our project's catchment area and involving additional programs. Conclusion: This case study demonstrates how an evidence-based, parent education and training program was adapted for Diné parents of children with autism. The adapted Diné PTA program is being piloted. We will continue to improve Diné PTA by using the pilot's results and community input to inform future adaptations. [ABSTRACT FROM AUTHOR]

In Nigeria and South Africa, women often have less voice and are less visible given cultural norms and related gender stereotypes. It is important to understand parents' gender roles in the context of caregiving for children with autism spectrum disorder because inequality in caregiving roles may influence the health of children with autism and that of their parents. We explored the lived caregiving experiences of male and female parents with autistic children in Nigeria (n = 15) and South Africa (n = 10) using structured and unstructured questionnaire. Results showed that women often experienced stress in relationship to multiple and substantial caregiving roles while men commonly limited their caregiving roles based on a patriarchal ideology related to their culture. [ABSTRACT FROM AUTHOR]

Elevated caregiver strain is common and linked to poor health in parents of children with autism. Yet, little research has examined caregiver strain longitudinally and in geographically diverse samples of parents whose children have autism. This study aimed to (1) examine change in caregiver strain and (2) determine correlates of improved caregiver strain in North American parents of children with autism. This was a secondary analysis of data from the Autism Treatment Network Registry Call-Back Study, conducted from 2015 to 2017 on a random sample of children with autism spectrum disorder at 12 clinical sites in the United States or Canada. Child assessments and parent-reported questionnaires were completed at two time points 1year apart. Caregiver strain was assessed with the Caregiver Strain Questionnaire. In total, 368 children had caregiver strain data at both times. Mean caregiver strain in parents did not significantly change between Times 1 and 2 (mean difference=0.05, t(360)=0.1, p=0.92). Improved caregiver strain between Times 1 and 2 was associated with improved child adaptive functioning and externalizing problem behaviors. Caregiver strain was persistent and multi-factorial. Parent training to manage challenging child behaviors and adaptively cope may benefit this vulnerable parent population. [ABSTRACT FROM AUTHOR]

Children with autism spectrum disorder have a high risk of vision problems yet little is known about their vision care. This cross-sectional survey study, therefore, examined vision care among 351 children with autism spectrum disorder ages 6–17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Vision care variables were vision tested with pictures, shapes, or letters in the past 2 years; vision tested by an eye care practitioner (e.g. ophthalmologist, optometrist) in the past 2 years; prescribed corrective eyeglasses; and wore eyeglasses as recommended. Covariates included sociodemographic, child functioning, and family functioning variables. Multivariable models were fit for each vision care variable. Though 78% of children with autism spectrum disorder had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism spectrum disorder prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Multivariable analysis results demonstrated statistically significant differences in vision care among children with autism spectrum disorder by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism spectrum disorder do not receive recommended vision care and highlight potentially modifiable disparities in vision care. Children with autism are at high risk for vision problems, which may compound core social and behavioral symptoms if untreated. Despite recommendations for school-aged children with autism to receive routine vision testing by an eye care practitioner (ophthalmologist or optometrist), little is known about their vision care. This study, therefore, examined vision care among 351 children with autism ages 6–17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Parents were surveyed using the following vision care measures: (1) child's vision was tested with pictures, shapes, or letters in the past 2 years; (2) child's vision was tested by an eye care practitioner in the past 2 years; (3) child was prescribed corrective eyeglasses; and (4) child wore eyeglasses as recommended. Sociodemographic characteristics such as parent education level, child functioning characteristics such as child communication abilities, and family functioning characteristics such as caregiver strain were also assessed in relationship to vision care. Although 78% of children with autism had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Differences in vision care were additionally found among children with autism by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism do not receive recommended vision care and highlight potentially modifiable disparities in vision care. [ABSTRACT FROM AUTHOR]

In this study we developed a brief, English/Spanish bilingual parent-reported scale of perceived community autism spectrum disorder (ASD) stigma and tested it in a multi-site sample of Latino and non-Latino white parents of children with ASD. Confirmatory factor analysis of the scale supported a single factor solution with 8 items showing good internal consistency. Regression modeling suggested that stigma score was associated with unmet ASD care needs but not therapy hours or therapy types. Child public insurance, parent nativity, number of children with ASD in the household, parent-reported ASD severity, and family structure, were associated with higher stigma score. The scale and the scale’s associations with service use may be useful to those attempting to measure or reduce ASD stigma. [ABSTRACT FROM AUTHOR]

Variation in parental beliefs about Autism Spectrum Disorder (ASD) may impact subsequent service use profiles. This study aimed to examine (1) variation in beliefs about ASD among English language proficient White (EP-W) mothers, English language proficient Latino (EPL) mothers, and limited English language proficient Latino (LEP-L) mothers of children with ASD; (2) variation in beliefs about ASD in the context of the child's ASD severity, among EP White mothers, EP Latino others, and LEP Latino mothers; and (3) potential links between maternal beliefs about ASD and children's current ASD treatment. This multi-site study included 305 English or Spanish-speaking parents of children with ASD, ages 2–10 years, who completed a survey about their beliefs about their child's ASD, their child's ASD severity, and treatments used by their children. Results showed that mothers in the EP-W, EP-L, and LEP-L groups differed in their beliefs about viewing ASD as a mystery. Only maternal views of ASD severity in the EP-W group were linked to their beliefs about ASD. Finally, maternal beliefs about ASD having major consequences on their child's life, and ASD being a mystery were strongly associated with a child's use of ASD intervention services. These findings provide new knowledge of how maternal beliefs about ASD vary in linguistically diverse groups, how a child's ASD severity may influence such beliefs, and how maternal beliefs correlate with the amount of therapy children with ASD receive. Future research should address how these beliefs or views are formed, what factors influence them, or whether they are malleable. Understanding parents' beliefs or views of having a child with ASD can potentially help us increase use of ASD intervention services in families of children with ASD. [ABSTRACT FROM AUTHOR]

Background: Stigma and knowledge about disabilities differ across groups, impacting care. No validated measures of perceived community disability stigma exist for families in multicultural communities, at risk for disparities.Aims: Develop and validate a brief bilingual (i.e., English/Spanish) perceived disability stigma measure, compare perceived disability and autism stigma, and examine perceived disability stigma by parent sociodemographic characteristics and disability familiarity.Methods and Procedures: Secondary data from 522 parents with children ages 2-5 years were recruited from Oregon WIC Special Supplemental Nutrition Program agencies for a child development and disability survey in 2015. The study sample included items regarding disability familiarity and stigma, among the survey population, which was 50 % Latino. Internal consistency, reliability and structural validity were examined. Secondary data on perceived disability and similar autism stigma items were compared. Nested multivariable linear regression assessed associations of perceived disability stigma with sociodemographic characteristics and disability familiarity.Outcomes and Results: Five perceived disability stigma items had reasonable internal consistency and performed well in the confirmatory factor analysis. Perceived autism stigma was greater than perceived disability stigma. Latino parents reported less perceived disability stigma than white parents. Parents who knew 1+ individual(s) with a disability reported greater perceived disability stigma.Conclusions and Implications: The perceived disability stigma scale demonstrated sound psychometric properties. Results suggest differences in how stigma is perceived across sociodemographic characteristics and disability familiarity. [ABSTRACT FROM AUTHOR]