Key Question 1: What Are the Disparities in Service Use Among Children With ASD From Different Racial and/or Ethnic Backgrounds and/or SESs?
| Author, Year . | Sample Size (N) and Diagnosis . | Study Sample Age, y . | Study Setting . | Research Design . | Types of Disparities Addressed . | Results . |
|---|---|---|---|---|---|---|
| Blanche et al,22 2015 | 28 (15 parents; 13 children with ASD) | 3–8 | Home and clinic | Descriptive qualitative analysis | Ethnicity | Because of language barriers, many Hispanic caregivers faced troubles when using services. Hispanic caregivers often experienced the following: (1) difficulties in dealing with the diagnosis (cultural differences), (2) difficulties in dealing with stigma and isolation from family and the community (cultural differences), and (3) difficulties in understanding the role of mothers in changing family routines. |
| Broder-Fingert et al,23 2013 | 3615 children with ASD | 2–21 | n/a; survey | Secondary analysis of medical record data | Race, ethnicity | There were significant racial and ethnic differences in subspecialty visits and procedures (such as GI, neurology, and psychology). Specialty visits: African American children had fewer subspecialty visits compared with white children. African American and Hispanic children had significantly lower use of subspecialty care in GI nutrition, neurology, psychiatry, and psychology compared with non-Hispanic white children. Specialty procedures: African American children and Hispanic children were significantly less likely to access specialty procedures compared with non-Hispanic white children. |
| Harstad et al,24 2013 | 662 children with ASD | 6–17 | n/a; survey | Secondary data analysis of national survey | Race, ethnicity, SES | Hispanic children were less likely to receive an IEP compared with non-Hispanic white children. Above–high school maternal education was associated with IEP receipt. Disability severity was not associated with IEP receipt. Perceived need for coordination of care was associated with IEP receipt. |
| Irvin et al,25 2011 | 137 children with ASD | 3–5 | Classroom and home | Cross-sectional study | Race, ethnicity, SES | There were associations between race and ethnicity and outcomes. Hispanic children received less SLT and OT compared with non-Hispanic children. Asian American children received less OT than white children. Caregivers with a higher SES were more likely to enroll their child in ABA services and private OT than those with lower SES. High-stressed caregivers had a lower probability of using OT across all races compared with low-stressed caregivers. |
| Liptak et al,14 2008 | 495 children with ASD | 0–17 | n/a; survey | Secondary data analysis of national survey | Race, ethnicity, SES | Children from poor families were less likely to use physician services and had more difficulty getting a referral to a specialist when compared with children from middle- or high-income families. African American and Hispanic families indicated increased difficulty in getting acute care or needed advice by phone than non-Hispanic white families. Hispanic children reportedly had more problems seeing a specialist than non-Hispanic white children. The prevalence of receiving an ASD diagnosis was significantly lower for Hispanic children compared with non-Hispanic children. Diagnostic rates between African American and white children were similar. Hispanic children were often diagnosed at a later age than non-Hispanic white children. Hispanic parents rated their children’s autism as more severe compared with non-Hispanic parents. |
| Lokhandwala et al,26 2011 | 5186 individuals with ASD; 20 744 controls | 0–100 | n/a; survey | Descriptive analysis of national survey | SES | A significantly higher proportion of hospitalizations among individuals with autism were those from families with annual incomes >$63 000 (81.7 of 100 000 vs 70.89 of 100 000). Hospitalizations of individuals with autism were significantly more likely to occur in hospitals in urban settings and the Northeast. There was a higher proportion of individuals with autism who had public insurance when compared with typically developing peers. However, among this population, hospitalization rates were higher for those with private insurance than public insurance. The length of stay was significantly longer for those with autism compared with those without autism. |
| Magaña et al,27 2012 | 1959 children with ASD and 2455 children with other developmental disabilities | 0–18 | n/a; survey | Secondary analysis of national survey | Race, ethnicity, SES | Hispanic children with autism and other developmental disabilities had higher odds of not having a personal doctor compared with non-Hispanic white children with autism and other developmental disabilities. Independent of autism diagnosis, children from families with an annual income <200% of the FPL were less likely to have a personal doctor than families with incomes at or >200% of the FPL. The disparities between African American and white children for not having a personal doctor were greater for children with autism than for those with other developmental disabilities. |
| Magaña et al,10 2013 | 104 individuals with ASD | 2–22 | Home | Cross-sectional study | Ethnicity, SES | Hispanic children were less likely to receive recreational programs, psychological services, respite care, and intensive autism therapy than non-Hispanic white children. Overall, Hispanic children had a greater number of unmet service needs compared with non-Hispanic white children. A higher number of services used was associated with higher levels of parental education. A higher number of services used was associated with having more sources of knowledge. |
| Parish et al,28 2012 | 1755 children with ASD and 2659 with other developmental disabilities | 0–18 | n/a; survey | Secondary analysis of national survey | Ethnicity | Hispanic children with ASD and other developmental disabilities were more likely to have difficulty using services, had problems getting referrals, and were less likely to have a personal doctor compared with non-Hispanic white children with ASD and other developmental disabilities. Hispanic children were more likely to have no insurance than non-Hispanic white children. |
| Thomas et al,29 2007 | 383 children with ASD | 0–11 | n/a; survey | Secondary analysis of community survey | Race, ethnicity, SES | Racial and ethnic minorities were less likely to use various treatment services (psychologist, case manager, etc) than individuals who identified as white. Parents who had a college education were more likely to use services for their children with ASD than those without a college education. Parents with higher levels of stress were more likely to use services for their children with ASD than those with less stress. Families covered by Medicaid or other public insurers were more likely to use services considered medically necessary than those with private insurance. |
| Author, Year . | Sample Size (N) and Diagnosis . | Study Sample Age, y . | Study Setting . | Research Design . | Types of Disparities Addressed . | Results . |
|---|---|---|---|---|---|---|
| Blanche et al,22 2015 | 28 (15 parents; 13 children with ASD) | 3–8 | Home and clinic | Descriptive qualitative analysis | Ethnicity | Because of language barriers, many Hispanic caregivers faced troubles when using services. Hispanic caregivers often experienced the following: (1) difficulties in dealing with the diagnosis (cultural differences), (2) difficulties in dealing with stigma and isolation from family and the community (cultural differences), and (3) difficulties in understanding the role of mothers in changing family routines. |
| Broder-Fingert et al,23 2013 | 3615 children with ASD | 2–21 | n/a; survey | Secondary analysis of medical record data | Race, ethnicity | There were significant racial and ethnic differences in subspecialty visits and procedures (such as GI, neurology, and psychology). Specialty visits: African American children had fewer subspecialty visits compared with white children. African American and Hispanic children had significantly lower use of subspecialty care in GI nutrition, neurology, psychiatry, and psychology compared with non-Hispanic white children. Specialty procedures: African American children and Hispanic children were significantly less likely to access specialty procedures compared with non-Hispanic white children. |
| Harstad et al,24 2013 | 662 children with ASD | 6–17 | n/a; survey | Secondary data analysis of national survey | Race, ethnicity, SES | Hispanic children were less likely to receive an IEP compared with non-Hispanic white children. Above–high school maternal education was associated with IEP receipt. Disability severity was not associated with IEP receipt. Perceived need for coordination of care was associated with IEP receipt. |
| Irvin et al,25 2011 | 137 children with ASD | 3–5 | Classroom and home | Cross-sectional study | Race, ethnicity, SES | There were associations between race and ethnicity and outcomes. Hispanic children received less SLT and OT compared with non-Hispanic children. Asian American children received less OT than white children. Caregivers with a higher SES were more likely to enroll their child in ABA services and private OT than those with lower SES. High-stressed caregivers had a lower probability of using OT across all races compared with low-stressed caregivers. |
| Liptak et al,14 2008 | 495 children with ASD | 0–17 | n/a; survey | Secondary data analysis of national survey | Race, ethnicity, SES | Children from poor families were less likely to use physician services and had more difficulty getting a referral to a specialist when compared with children from middle- or high-income families. African American and Hispanic families indicated increased difficulty in getting acute care or needed advice by phone than non-Hispanic white families. Hispanic children reportedly had more problems seeing a specialist than non-Hispanic white children. The prevalence of receiving an ASD diagnosis was significantly lower for Hispanic children compared with non-Hispanic children. Diagnostic rates between African American and white children were similar. Hispanic children were often diagnosed at a later age than non-Hispanic white children. Hispanic parents rated their children’s autism as more severe compared with non-Hispanic parents. |
| Lokhandwala et al,26 2011 | 5186 individuals with ASD; 20 744 controls | 0–100 | n/a; survey | Descriptive analysis of national survey | SES | A significantly higher proportion of hospitalizations among individuals with autism were those from families with annual incomes >$63 000 (81.7 of 100 000 vs 70.89 of 100 000). Hospitalizations of individuals with autism were significantly more likely to occur in hospitals in urban settings and the Northeast. There was a higher proportion of individuals with autism who had public insurance when compared with typically developing peers. However, among this population, hospitalization rates were higher for those with private insurance than public insurance. The length of stay was significantly longer for those with autism compared with those without autism. |
| Magaña et al,27 2012 | 1959 children with ASD and 2455 children with other developmental disabilities | 0–18 | n/a; survey | Secondary analysis of national survey | Race, ethnicity, SES | Hispanic children with autism and other developmental disabilities had higher odds of not having a personal doctor compared with non-Hispanic white children with autism and other developmental disabilities. Independent of autism diagnosis, children from families with an annual income <200% of the FPL were less likely to have a personal doctor than families with incomes at or >200% of the FPL. The disparities between African American and white children for not having a personal doctor were greater for children with autism than for those with other developmental disabilities. |
| Magaña et al,10 2013 | 104 individuals with ASD | 2–22 | Home | Cross-sectional study | Ethnicity, SES | Hispanic children were less likely to receive recreational programs, psychological services, respite care, and intensive autism therapy than non-Hispanic white children. Overall, Hispanic children had a greater number of unmet service needs compared with non-Hispanic white children. A higher number of services used was associated with higher levels of parental education. A higher number of services used was associated with having more sources of knowledge. |
| Parish et al,28 2012 | 1755 children with ASD and 2659 with other developmental disabilities | 0–18 | n/a; survey | Secondary analysis of national survey | Ethnicity | Hispanic children with ASD and other developmental disabilities were more likely to have difficulty using services, had problems getting referrals, and were less likely to have a personal doctor compared with non-Hispanic white children with ASD and other developmental disabilities. Hispanic children were more likely to have no insurance than non-Hispanic white children. |
| Thomas et al,29 2007 | 383 children with ASD | 0–11 | n/a; survey | Secondary analysis of community survey | Race, ethnicity, SES | Racial and ethnic minorities were less likely to use various treatment services (psychologist, case manager, etc) than individuals who identified as white. Parents who had a college education were more likely to use services for their children with ASD than those without a college education. Parents with higher levels of stress were more likely to use services for their children with ASD than those with less stress. Families covered by Medicaid or other public insurers were more likely to use services considered medically necessary than those with private insurance. |
GI, gastrointestinal; n/a, not applicable.