Katharine E. Zuckerman

Pediatrician identification of Latino children at risk for autism spectrum disorder

BACKGROUND AND OBJECTIVES: Latino–white disparities in age at autism spectrum disorder (ASD) diagnosis may be modified by primary care pediatrician (PCP) practices and beliefs. The objectives of this study were to assess ASD and developmental screening practices, attitudes toward ASD identification in Latino children, and barriers to ASD identification for Latino children, in a sample of 267 California PCPs. METHODS: In mail-based PCP survey, we assessed rates of bilingual general developmental and ASD screening, perceptions of parent ASD knowledge in Latino and white families, reports of difficulty assessing for ASDs in Latino and white children, and perceptions of barriers to early ASD identification for Latinos. RESULTS: Although 81% of PCPs offered some form of developmental screening, 29% of PCPs offered Spanish ASD screening per American Academy of Pediatrics guidelines, and only 10% offered both Spanish general developmental and Spanish ASD screening per American Academy of Pediatrics guidelines. Most PCPs thought that Latino (English and Spanish primary family language) parents were less knowledgeable about ASDs than white parents. PCPs had more difficulty assessing ASD risk for Latino children with Spanish primary family language than for white children, even when the PCP conducted recommended ASD screening or had >25% Latino patients. The most frequent barrier to ASD identification in Latinos was access to developmental specialists. CONCLUSIONS: Multiple factors in the primary care setting may contribute to delayed ASD identification for Latinos. Promoting language-appropriate screening, disseminating culturally appropriate ASD materials to Latino families, improving the specialist workforce, and providing PCP support in screening and referral of Latino children may be important ways to reduce racial and ethnic differences in care.

Epidemiology of Autism Spectrum Disorders

In this chapter, we review existing prevalence estimates for autism spectrum disorders (ASDs) since 2000 and discuss methodological factors impacting the estimation of prevalence and the interpretation of changes in prevalence estimates over time. Possible explanations for an increase in the prevalence of ASD within and across populations are considered. Increases in ASD diagnostic rates cannot currently be attributed to a true increase in the incidence of ASD due to multiple confounding factors. It remains to be seen how changes to diagnostic criteria introduced in the DSM-5 will impact estimates of ASD prevalence going forward.

Obesity and Autism

OBJECTIVE: Overweight and obesity are increasingly prevalent in the general pediatric population. Evidence suggests that children with autism spectrum disorders (ASDs) may be at elevated risk for unhealthy weight. We identify the prevalence of overweight and obesity in a multisite clinical sample of children with ASDs and explore concurrent associations with variables identified as risk factors for unhealthy weight in the general population. METHODS: Participants were 5053 children with confirmed diagnosis of ASD in the Autism Speaks Autism Treatment Network. Measured values for weight and height were used to calculate BMI percentiles; Centers for Disease Control and Prevention criteria for BMI for gender and age were used to define overweight and obesity (≥85th and ≥95th percentiles, respectively). RESULTS: In children age 2 to 17 years, 33.6% were overweight and 18% were obese. Compared with a general US population sample, rates of unhealthy weight were significantly higher among children with ASDs ages 2 to 5 years and among those of non-Hispanic white origin. Multivariate analyses revealed that older age, Hispanic or Latino ethnicity, lower parent education levels, and sleep and affective problems were all significant predictors of obesity. CONCLUSIONS: Our results indicate that the prevalence of unhealthy weight is significantly greater among children with ASD compared with the general population, with differences present as early as ages 2 to 5 years. Because obesity is more prevalent among older children in the general population, these findings raise the question of whether there are different trajectories of weight gain among children with ASDs, possibly beginning in early childhood.

Racial, Ethnic, and Language Disparities in Early Childhood Developmental/Behavioral Evaluations A Narrative Review

The U.S. Department of Health and Human Services has proposed “Increasing the proportion of children with mental health problems who receive treatment” as one of its Healthy People 2020 Objectives.(1) With high rates (2) and increasing prevalence of childhood behavioral and developmental (DB) conditions,(3–6) promptly identifying and treating these disorders is important so that children’s functional outcomes can be maximized. In addition, since long-term treatment of childhood DB conditions is expensive,(7–9) intervention in early childhood has the potential to produce large cost savings.(10) However, as with other areas of child health,(11, 12) racial/ethnic and language disparities exist in the diagnosis and treatment of early childhood DB conditions. For instance, compared to other children, African-American and Latino children are less likely to be diagnosed with an autism spectrum disorder (ASD), and are more likely to be diagnosed at older ages and with more severe symptoms.(13–18) Likewise, African-American and Latino children are less likely to be diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), and are less likely to be treated with a stimulant medication once diagnosed.(19–22) Table 1 summarizes recent peer-reviewed studies of diagnostic disparities in ASD and ADHD, two common early childhood developmental conditions. Similar disparities exist in the areas of overall developmental risk,(23) depression and mental health disorders,(24–26) use of psychotropic medications,(27) and use of mental health services.(28) These racial and ethnic disparities deserve increased attention given recent demographic trends: Census estimates suggest that the U.S. population younger than age 5 is nearly 50% racial/ethnic minority,(29) and some states are now “majority minority” for young children (30) Table 1 Racial and Ethnic Differences in Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD) Diagnosis Rates The medical evaluation and treatment of young children at risk for DB disorders is a complex process involving many steps. The process begins when families identify developmental concerns about their children and raise these concerns with health care providers (Figure 1). Alternatively, a medical or other community or educational professional may recognize a concern via direct observation, developmental/behavioral surveillance, or standardized developmental/behavioral or disease-specific screening. Once a concern is identified, the next step is diagnosis and treatment. Whereas some disorders (such as ADHD) can be diagnosed and treated in the primary care setting, in many cases, a child must be referred to a developmental or mental health specialist for diagnosis through further testing and clinical evaluation. In addition, the child may require additional therapeutic services (such as Early Intervention or disorder-specific therapy).(31, 32) Figure 1 Developmental evaluation and referral process In this review article, we examine the screening, referral, and evaluation process for early childhood DB conditions, assessing points in the process where which racial/ethnic and language disparities are known or likely to occur. In addition, this review article contributes to the current base of knowledge by exploring possible reasons for these disparities. First, we examine different parent beliefs about DB problems among minority children. We also address how minority children are cared for in primary and specialty care settings, looking at missed opportunities for identification of concerns and follow-up of abnormal findings. We investigate the performance of developmental and behavioral screening and diagnostic tests among minority children. Finally, we highlight areas for additional research and suggest possible improvements to reduce racial/ethnic and language disparities in DB care.

Disparities in Diagnosis and Treatment of Autism in Latino and Non-Latino White Families

This study assesses disparities in diagnosis and treatment of autism spectrum disorder among non-Latino white and Latino families with English proficiency or limited English proficiency. OBJECTIVES: To compare barriers to autism spectrum disorder (ASD) diagnosis and current ASD-related service use among non-Latino white (NLW) families and Latino families with English proficiency (L-EP) or limited English proficiency (L-LEP). METHODS: We conducted a mixed-mode survey of families of children with confirmed ASD seen at specialty clinics in 3 United States cities. Bivariate and multivariate analyses compared barriers to ASD diagnosis, current service use, and unmet therapy need among NLW, L-EP, and L-LEP families. RESULTS: Overall, barriers to ASD diagnosis were prevalent: families (n = 352) experienced a mean of 8 of 15 barriers to ASD diagnosis. The most prevalent barriers overall were “stress of diagnostic process,” “parent knowledge about ASD,” and “understanding medical system.” Compared with NLW families, L-LEP families were more likely to experience barriers related to knowledge about ASD and trust in providers. Children in L-LEP families also had fewer current therapy hours and more unmet therapy needs than children in NLW families. L-EP families’ barriers and treatment services use profile was more similar to NLW than to L-LEP families. CONCLUSIONS: English proficiency was an important marker for barriers to ASD diagnosis and treatment in Latinos. Increasing ASD-related knowledge and provider trust may decrease disparities in the diagnosis and treatment of ASD among US Latinos.

Conceptualization of Autism in the Latino Community and its Relationship with Early Diagnosis

Objective: Early identification of autism spectrum disorders (ASD) has been linked to improved long-term developmental outcomes. However, Latino children are diagnosed later than white non-Latino children. We aimed to qualitatively assess the understanding and conceptualization of ASD in the Latino community to understand potential community barriers to early diagnosis. Methods: We conducted 5 focus groups and 4 qualitative interviews with 30 parents of typically developing Latino children in Oregon. Participants were asked structured questions concerning video vignettes that follow a Latina mother from the time she begins to worry about her 3-year-old sons behaviors to the time he receives an ASD diagnosis. Focus groups and interviews were audio-recorded, transcribed, and independently coded. Coded data were analyzed using thematic analysis. Results: Many Latino families in the study had not heard of ASD or had little information about it. Families sometimes assumed that ASD red flags were normal or could be attributed to family dysfunction. Families also had concerns about provider communication and access to language services. Having a child with a developmental delay was associated with embarrassment, rejection, and family burden, making it difficult for parents to raise developmental concerns with providers. Conclusions: Pediatric providers should not assume that Latino parents have heard of ASD or know its symptoms. Providers should be aware that parents may be reluctant to mention concerns because of cultural factors. The health care system needs to improve resources for Latino parents with limited English proficiency. Policies should encourage the use of developmental screening in primary care.

Family Impacts Among Children With Autism Spectrum Disorder: The Role of Health Care Quality

OBJECTIVE To compare health care quality and family employment and financial impacts among children with special health care needs (CSHCN) with autism spectrum disorder (CSHCN + ASD), CSHCN with functional limitations (CSHCN + FL), and CSHCN lacking these conditions (other CSHCN); to test whether high health care quality was associated with reduced family impacts among CSHCN + ASD. METHODS Data from the 2009-2010 National Survey of CSHCN were used to compare 3025 CSHCN + ASD, 6505 CSHCN + FL, and 28,296 other CSHCN. Weighted multivariate logistic regression analyses examined 6 age-relevant, federally defined health care quality indicators and 5 family financial and employment impact indicators. Two composite measures were additionally used: 1) receipt of care that met all age-relevant quality indicators; and 2) had ≥ 2 of the 5 adverse family impacts. RESULTS Across all health care quality indicators, CSHCN + ASD fared poorly, with only 7.4% meeting all age-relevant indicators. CSHCN + ASD had worse health care quality than other CSHCN, including CSHCN + FL. CSHCN + ASD also had high rates of adverse family impact, with over half experiencing ≥ 2 adverse impacts. Rates of adverse family impact were higher in CSHCN + ASD than other CSHCN, including CSHCN + FL. Among CSHCN + ASD, those whose health care that met federal quality standards were less likely to have multiple adverse family impacts than CSHCN + ASD whose health care did not meet federal quality standards. CONCLUSIONS CSHCN + ASD are more prone to experience poor health care quality and family impacts than other CSHCN, even CSHCN + FL. Receipt of care meeting federal quality standards may potentially lessen adverse family impacts for CSHCN + ASD.

Incomplete Specialty Referral among Children in Community Health Centers

OBJECTIVE To assess rates of incomplete specialty referral (referral not resulting in a specialist visit) and risk factors for incomplete referral in pediatric community health care centers. STUDY DESIGN In this cross-sectional study, we used referral records and electronic health records to calculate rate of incomplete referral in 577 children referred from two health care centers in underserved communities to any of 19 pediatric specialties at an affiliated tertiary care center, over 7 months in 2008-2009. We used logistic regression to test the association of incomplete referral with child/family sociodemographic and health care system factors. RESULTS Of the children, 30.2% had an incomplete referral. Incomplete referral rates were similar at the two health care centers, but varied from 10% to 73% according to specialty clinic type. In multivariate analysis, sociodemographic factors of older child age, public insurance status, and no chronic health conditions correlated with incomplete referral, as did health care system factors of surgical specialty clinic type, low patient volume, longer wait for visit, and appointment rescheduling. CONCLUSION Almost one-third of children referred to specialists were unable to complete the referral in a timely manner. To improve specialty access, health care organizations and policymakers should target support to families with high-risk children and remediate problematic health care system features.

Parent Health Beliefs, Social Determinants of Health, and Child Health Services Utilization among US School-Age Children with Autism

Objective:Substantial variation exists in autism spectrum disorder (ASD) care by race, ethnicity, and socioeconomic status; however, the role of parent health beliefs in this variation is poorly understood. Study goals were to (1) examine variation in parent beliefs about ASD prognosis and treatment according to social determinants of health (SDH) and (2) assess whether this variation was associated with variable health services utilization, among 1420 children with special health care needs (CSHCN) having ASD. Methods:We used linked data from the 2011 Survey of Pathways to Diagnosis and Treatment and the 2009–2010 National Survey of Children with Special Health Care Needs. Bivariate and multivariate analyses assessed variation in parent beliefs according to race/ethnicity, household income, and parent educational attainment. Further analyses assessed whether variation in beliefs was associated with the use of psychotropic medication, traditional therapy, or complementary/alternative therapy for ASD. Results:Parents of lower educational attainment or who had lower income were more likely to think that their childs condition was a mystery. Near-poor families were less likely to believe that they had the power to change the childs condition. Parents of minority children were more likely than white children to view their childs condition as temporary. However, these differences in beliefs only had modest associations with variation in use of the health services analyzed. Conclusions:Some SDH-related variation exists in health beliefs among parents of children with ASD, but these differences may not be the main factors accounting for ASD health care disparities.

Early Childhood Screen Time and Parental Attitudes Toward Child Television Viewing in a Low-Income Latino Population Attending the Special Supplemental Nutrition Program for Women, Infants, and Children

BACKGROUND Early childhood media exposure is associated with obesity and multiple adverse health conditions. The aims of this study were to assess parental attitudes toward childhood television (TV) viewing in a low-income population and examine the extent to which child BMI, child/parent demographics, and household media environment are associated with adherence to American Academy of Pediatrics (AAP) guidelines for screen time. METHODS This was a cross-sectional survey study of 314 parents of children ages 0-5 years surveyed in English or Spanish by self-administered questionnaire at a Special Supplemental Nutrition Program for Women, Infants and Children (WIC) clinic in Oregon. RESULTS In this majority Latino sample (73%), half (53%) of the children met AAP guidelines on screen time limits, 56% met AAP guidelines for no TV in the childs bedroom, and 29% met both. Children were more likely to meet AAP guidelines when there were <2 TVs in the home, there was no TV during dinner, or their parents spent less time viewing electronic media. Parents who spent less time viewing electronic media were more likely to report believing that TV provides little value or usefulness. CONCLUSIONS In this low-income, predominantly Latino population attending WIC, parent media-viewing and household media environment are strongly associated with child screen time. Programs aimed at reducing child screen time may benefit from interventions that address parental viewing habits.