A Systematic Review of Recruiting and Retaining Sociodemographically Diverse Families in Neurodevelopmental Research Studies.

Underrepresentation of socioeconomically, culturally, and/or linguistically diverse (SCLD) children with neurodevelopmental disorders (NDD) and their families has become a focal point for researchers. This systematic review aimed to identify researchers' strategies for recruiting and retaining SCLD families of children with NDD, published between 1993 and 2018. One hundred twenty-six articles were included, and study samples were categorized as "High SCLD" and "Low SCLD". Chi-square tests of independence were used to determine associations between sample composition (i.e., High/Low SCLD sample) and study characteristics reported. Significant associations were found between sample composition and studies that explicitly stated intention to recruit SCLD families, χ2(1) = 12.70, p < .001, Phi = 0.38 (moderate); and for studies that reported the following participant characteristics: language, χ2(1) = 29.58, p < .001, Phi = 0.48 (moderate-to-large); and race/ethnicity + SES + language, χ2(1) = 19.26, p <. 001, Phi = 0.39 (moderate). However, associations were not found between recruitment and retention approaches and whether studies included High SCLD or Low SCLD samples. Further study of NDD researchers' recruitment and retention approaches that successfully include SCLD families is needed.

A cross-cultural comparison of a measure of parent perceptions among families of children with autism in Vietnam.

LAY ABSTRACT: Raising an autistic child can affect many aspects of families' lives. Parents are responsible for many decisions, from initiating evaluation to selecting and implementing treatments. How parents conceptualize the course and nature of their child's diagnosis influences these processes and parents' own well-being. Parents' perceptions about their children's autism are also affected by cultural contexts and understanding of autism. The Illness Perception Questionnaire-Revised (IPQ-R) is widely used to study cognitions in chronic health research and has been adapted and validated to measure parents' perceptions and beliefs about their children's ASD (IPQ-R-ASD). However, such studies are mostly conducted in high-income countries (HICs) with western, individualistic cultural values (e.g. United States, Canada). Therefore, it is unclear whether the IPQ-R-ASD is a useful instrument in understanding parents' perceptions of autism in Vietnam, a lower- and middle-income country (LMIC) with collectivistic Asian cultural values. These differences suggest that parents in Vietnam may have cognitive representations of their children's autism that differ from those of parents living in HIC, western countries. The purpose of this study was to examine the usability of the translated Vietnamese IPQ-R-ASD that may, ultimately, help explore Vietnamese parents' autism perceptions. While the study's result indicated the usability of the translated measure in Vietnam, when interpreted with Vietnamese norms, results also highlighted notable differences between Vietnamese and North American parents' perceptions of autism that warrant further research.

Pre-service Teachers' Perspectives on Transition to Kindergarten Practices for Autistic Children.

Autistic children present with unique challenges that may be associated with challenges during the kindergarten transition process. While teachers endorse transition to kindergarten practices as important, implementation of effective transition practices is inconsistent. One possible reason is limited training during pre-service education; however, research about this is scarce. This study examined pre-service teachers' knowledge of autism spectrum disorder (ASD) and transitions to kindergarten. Findings indicate a lack of knowledge regarding both autism and transition, as well as significant differences in knowledge of autism, wherein those seeking special education certification reported higher levels of knowledge. These results highlight training opportunities for preparing pre-service teachers to better serve young autistic children.

Comparing Fathers' and Mothers' Perspectives About Their Child's Autism Spectrum Disorder.

Mothers are often the primary parent participants in autism spectrum disorder (ASD) research. As a result, little is known about fathers' perceptions regarding their children's ASD and whether these perceptions differ from mothers'. Given the limited information available regarding fathers' perceptions about their children's ASD, this study aimed to investigate father variables (stress, coping, support, and perception of disability) and how they compare to mothers'. Participants were 361 biological parents (294 mothers and 67 fathers) of children on the autism spectrum who participated in a larger study. Results revealed significant differences between mothers' and fathers' self-reported stress and coping. Understanding differences between parents' perspectives has both research and clinical implications for working with families raising children on the autism spectrum.

Understanding Vaccine Hesitancy Among Parents of Children With Autism Spectrum Disorder and Parents of Children With Non-Autism Developmental Delays.

Parents of children with autism spectrum disorder (ASD) may be at greater risk for developing antivaccine beliefs that lead to vaccine delays and/or refusals for their children. We investigated current parental vaccine hesitancy, parents' beliefs about causes of children's developmental delays, and children's vaccination histories among parents of children with ASD or non-ASD developmental delays. Data were analyzed from 89/511 parents (17.4%) who completed the Parent Attitudes About Childhood Vaccines questionnaire and the Revised Illness Perception Questionnaire; 46.1% had childhood vaccination records available. Overall, 21/89 (23.6%, 95% confidence interval [CI]: 15.0-34.0) of parents were vaccine hesitant (ASD n = 19/21 [90.5%], non-ASD n = 2/21 [9.5%]). Parents of children with ASD were significantly more likely to agree with "toxins in vaccines" as a cause of their child's developmental delays (28.4% vs 5.0%, P = .034). The odds of being vaccine hesitant were 11.9 times (95% CI 2.9-48.0) greater among parents who agreed versus disagreed that toxins in vaccines caused their children's developmental delays. Rates of prior vaccine receipt did not differ between hesitant and nonhesitant groups.

Exploring sociodemographic predictors of parents' perceptions about their children's autism and their families' adjustment.

BACKGROUND: Diagnostic and treatment disparities exist among sociodemographically diverse families with autism spectrum disorder (ASD). These disparities may be partially explained by the lack of information researchers and providers have regarding the unique experiences of diverse populations. AIMS: This study aimed to explore sociodemographic predictors of parents' perceptions about their children's ASD and families' adjustment. METHODS: Hierarchical linear regression analyses were conducted to explore whether sociodemographic factors predicted aspects of parent's perceptions and family adjustment among 363 parents of children and adolescents with ASD. RESULTS: Parents' race/ethnicity, education level, and annual household income predicted their beliefs that they or treatment could be helpful in controlling their children's ASD symptoms; their understanding of ASD; their experiences of emotional distress; their involvement in resources of support; and their families' ability to manage stress. CONCLUSION: Our results demonstrate the importance of considering the complexity of families' demographic characteristics when working to support families with ASD. Parents' unique characteristics and experiences influence their perceptions about their children's ASD diagnosis and their families' ability to adjust to life raising children with ASD. Research extending this work is a critical step in dismantling ASD diagnostic and treatment disparities.

Beliefs about causes of autism and vaccine hesitancy among parents of children with autism spectrum disorder.

Vaccine hesitancy may be more common among parents of children with autism spectrum disorder (ASD). We examined factors associated with ASD-specific vaccine hesitancy among caregivers of children with ASD who participated in the SPARK study (Simons Foundation Powering Autism Research for Knowledge). 225 participants completed an online survey containing the Parent Attitudes About Childhood Vaccines (PACV) questionnaire (measure of vaccine hesitancy) and the Illness Perception Questionnaire revised for parents of children with ASD (IPQ-R-ASD; measure of parents' views about ASD). 65 participants (28.8%) were vaccine hesitant (PACV score ≥ 50); children of vaccine-hesitant parents (VHPs) were less likely to be first born (n = 27, 41.5%), had greater ASD-symptom severity (mean Social Communication Questionnaire score = 23.9, SD = 6.9), and were more likely to have experienced developmental regression (n = 27, 50.9%) or plateau (n = 37, 69.8%). Compared to non-hesitant parents, VHPs significantly more often endorsed accident/injury, deterioration of the child's immune system, diet, environmental pollution, general stress, parents' negative views, parents' behaviors/decisions, parents' emotional state, and vaccines as causes for ASD. VHPs also had higher scores on the Personal Control, Treatment Control, Illness Coherence, and Emotional Representations subscales of the IPQ-R than did non-hesitant parents. In the final model, ASD-related vaccine hesitancy was significantly associated with higher scores on the Emotional Representations subscale (OR = 1.13, p = 0.10), agreement with deterioration of the child's immunity as a cause of ASD (OR = 12.47, p < 0.001), the child not having achieved fluent speech (OR = 2.67, p = 0.17), and the child experiencing a developmental plateau (OR = 3.89, p = 0.002). Findings suggest that a combination of child functioning and developmental history, as well as parents' negative views about and their sense of control over ASD, influence vaccine hesitancy among parents of children with ASD.

Vaccine Hesitancy and Illness Perceptions: Comparing Parents of Children with Autism Spectrum Disorder to other Parent Groups.

Fears persist despite compelling evidence refuting associations between vaccines and autism spectrum disorder (ASD). We compared vaccine hesitancy (VH) and beliefs about illness causes among parents of children in four groups: ASD, non-ASD developmental disorders, rheumatologic conditions, and the general pediatric population. VH was 19.9% overall; parents of children with ASD reported highest VH rates (29.5%) and more frequently attributed ASD to toxins in vaccines (28.9% vs. 15.7%, p=0.004). The odds of VH were increased among parents who attributed their child's condition to diet or eating habits (aOR 4.2; 95% CI: 1.6, 11.2) and toxins found in vaccines (aOR 20, 95% CI: 7.1, 55.9). Parents who attributed the condition to chance or bad luck were less likely to be vaccine hesitant (aOR 0.1; 95% CI: 0.03, 0.5).

Parents' gesture adaptations to children with autism spectrum disorder.

The present study focused on parents' social cue use in relation to young children's attention. Participants were ten parent-child dyads; all children were 36 to 60 months old and were either typically developing (TD) or were diagnosed with autism spectrum disorder (ASD). Children wore a head-mounted camera that recorded the proximate child view while their parent played with them. The study compared the following between the TD and ASD groups: (a) frequency of parent's gesture use; (b) parents' monitoring of their child's face; and (c) how children looked at parents' gestures. Results from Bayesian estimation indicated that, compared to the TD group, parents of children with ASD produced more gestures, more closely monitored their children's faces, and provided more scaffolding for their children's visual experiences. Our findings suggest the importance of further investigating parents' visual and gestural scaffolding as a potential developmental mechanism for children's early learning, including for children with ASD.

Using latent class analysis to identify treatment-use subgroups among parents of children with autism spectrum disorder.

Among parents of 2,582 children (ages 4-17 years old) with autism spectrum disorder (ASD), we used latent class analysis to identify subgroups and profiles of treatment users and included annual household income in the specification of the models, then described characteristics of each subgroup. Based on three indicators of fit (Akaike's Information Criterion, Bayesian Information Criterion, and Lo-Mendell-Rubin), six latent classes of treatment users emerged. Subgroups included users of: (a) mostly private and school speech and occupational therapies; (b) nearly all treatment types; (c) mostly speech and occupational therapies, plus intensive behavioral and "other" treatments, but little medication use; (d) private therapies almost exclusively; (e) primarily psychotropic medications; and (f) mostly school-based therapies. Income significantly predicted class differences for all but one latent class. Probabilities of families' lifetime use of nine treatment types varied depending on latent classification. Proportions of families reporting having observed children's developmental regression were largest in those with the highest overall treatment use, and these children also had the lowest cognitive and adaptive-functioning scores and the highest ASD symptom scores. Understanding patterns of treatment use among families of children with ASD is an important first step in enhancing treatment-related selection and implementation. Autism Research 2019, 12: 843-854. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: We identified six different groups of treatment users to help explain patterns in treatment implementation among parents of children and adolescents with autism. These included families who used: (a) mostly used private and school speech and occupational therapies; (b) nearly all treatment types (private and school therapies, intensive behavioral, biomedical, psychotropic medications, and other treatments); (c) mostly speech and occupational therapies, plus intensive behavioral and "other" treatments, but little medication use; (d) private therapies almost exclusively; (e) primarily psychotropic medications; and (f) mostly school-based therapies.

Criminal Behavior and School Discipline in Juvenile Justice-Involved Youth with Autism.

The objective was to delineate the prevalence of criminal behavior and school discipline in juvenile justice-involved youth (JJY) with autism. A sample of 143 JJY with autism was matched to comparison groups of JJY without a special education classification, JJY with learning disabilities, and JJY with other special educational needs (N = 572). Results showed that JJY with autism committed significantly fewer property crimes. With regard to school discipline, JJY with autism were least likely to receive policy violations, out-of-school suspensions, and in-school suspensions. Finally, regardless of special education classification, JJY who had a history of fighting in school were more likely to recidivate. Our results suggest that JJY with autism are not more likely to commit crimes compared to JJY without SEN.

Validating the Revised Illness Perception Questionnaire as a Measure of Parent Perceptions of Autism Spectrum Disorder.

The illness perception questionnaire (IPQ) and its revision (IPQ-R) measure perceptions about health-related diagnoses and the influence of cognitions on coping. In this study, the factor structure of a version revised for use with autism spectrum disorder (ASD) was investigated with a sample of parents (n = 361) whose children have ASD. Subsequently, multidimensional item response theory was used to evaluate item and subscale properties. Results indicated items from five of the seven IPQ-R-ASD scales loaded as expected, though subscales related to control were not distinct. Additionally, parents' response patterns were evaluated and discussed. Use of this measure in ASD-focused research may enhance understanding of how parents' cognitions of their child's ASD impacts treatment selection, treatment implementation, and overall family well-being.

Parental report of vaccine receipt in children with autism spectrum disorder: Do rates differ by pattern of ASD onset?

A contentious theory espoused by some parents is that regressive-onset of autism spectrum disorder (ASD) is triggered by vaccines. If this were true, then vaccine receipt should be higher in children with regressive-onset ASD compared with other patterns of onset. Parental report of rate of receipt for six vaccines (DPT/DTaP, HepB, Hib, polio, MMR, varicella) was examined in children with ASD (N=2755) who were categorized by pattern of ASD onset (early onset, plateau, delay-plus-regression, regression). All pairwise comparisons were significantly equivalent within a 10% margin for all vaccines except varicella, for which the delay-plus-regression group had lower rates of receipt (81%) than the early-onset (87%) and regression (87%) groups. Findings do not support a connection between regressive-onset ASD and vaccines in this cohort.

Emergence of autism spectrum disorder in children from simplex families: relations to parental perceptions of etiology.

Current research describes a four-category scheme of Autism Spectrum Disorder (ASD) onset: early, regressive, plateau, delay + regression. To replicate prevalence of different onset types, ASD onset (per the Autism Diagnostic Interview--Revised) was examined in a large North American sample; for a subset, parents' causal beliefs were ascertained via the Revised Illness Perception Questionnaire to examine potential associations with ASD-onset types. Onset rates were similar across samples, with a slightly higher proportion of children in the subsample categorized with regression. Top-rated causes of ASD were genetics, brain structure, will of God, toxins in vaccines, and environmental pollution. Parents reporting regression more often believed that toxins in vaccines caused ASD. Influences on treatment selection and broader public-health ramifications are discussed.

Psychotropic medication use among children with autism spectrum disorders within the Simons Simplex Collection: are core features of autism spectrum disorder related?

Psychotropic medication use and its relationship to autism spectrum core features were examined in a well-characterized but nonstratified North American sample (N = 1605) of children/adolescents diagnosed with autism spectrum disorders utilizing the Autism Diagnostic Observation Schedule and the Autism Diagnostic Interview-Revised, from the multisite Simons Simplex Collection. Analyses included (a) prevalence of psychotropic use (overall, and by classes), (b) correlations between prevalence of use and autism spectrum core features, age, and cognitive functioning, and (c) logistic regression to identify whether these factors were predictive of psychotropic use. Results indicated 41.7% ever used one or more classes of psychotropic medications, with attention deficit hyperactivity disorder medications used most. Small but significant correlations between psychotropic medication use and (a) social impairment (p < .001) and (b) repetitive behaviors (p < .001) were found. Overall, however, autism spectrum disorder core features are weakly related to medication use. Older children used more psychotropics (p < .001), and higher cognitive functioning was associated with less overall psychotropic use (p < .001). Logistic regression indicated that use of psychotropics was predicted by repetitive behaviors (both clinician-observed and parent-reported), age, and cognitive ability level. Limitations inherent to the Simons Simplex Collection sample, methodology, and the correlational analyses are discussed. Directions for future research include investigation of factors more influential than core symptoms on psychotropic treatment (e.g. parent perceptions, comorbid symptoms).