A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005–2006
OBJECTIVES. We sought to examine the health care experiences of children with autism spectrum disorder and the impact of autism spectrum disorder on the family and to assess whether having a medical home is associated with less family impact.
METHODS. We used the 2005–2006 National Survey of Children With Special Health Care Needs to compare 2088 children with special health care needs, aged 3 to 17 years, reported by their parents to have autism spectrum disorder, with children with special health care needs with “other emotional, developmental, or behavioral problems” (excluding autism spectrum disorder; n = 9534) and 26751 other children with special health care needs. We used weighted logistic regression to examine unmet needs for specific health care and support services, delayed care, no usual care source or personal physician, difficulty receiving referrals, and financial, employment, or time problems because of child's care.
RESULTS. Nationally, an estimated 535000 children have special health care needs and autism spectrum disorder, a prevalence of 86 per 10000 children aged 3 to 17 years. Among children with special health care needs, 5.6% have autism spectrum disorder. Compared with other children with special health care needs without emotional, developmental, or behavioral problems, children with special health care needs with autism spectrum disorder were more likely to have unmet needs for specific health care services, family support services, delayed or foregone care, difficulty receiving referrals, and care that is not family centered. Children with special health care needs with autism spectrum disorder were more likely to live in families that report financial problems, need additional income for the child's medical care, reduce or stop work because of the child's condition, spend ≥10 hours per week providing or coordinating care, and paid more than $1000 in the previous year for the child's care. The financial impacts of autism spectrum disorder were significantly more burdensome when children with special health care needs did not have a medical home.
CONCLUSIONS. Children with special health care needs with autism spectrum disorder are significantly more likely to have problems regarding access to care and unmet needs, and their families have greater financial, employment, and time burdens compared with other children with special health care needs. Receipt of primary care in a medical home may reduce these burdens.
- autism spectrum disorder
- children with special health care needs
- national estimates
- access to health care
Autism spectrum disorder (ASD) is a cluster of lifelong neurodevelopmental disorders composed of autistic disorder, Asperger syndrome, and pervasive developmental disorder, not otherwise specified. These disorders are marked by significant qualitative limitations in social interactions, verbal and nonverbal communication, and restricted repetitive and stereotyped patterns of behavior, interests, and activities.1 Children with ASD also have higher rates of comorbidities, including epilepsy, gastrointestinal problems, anxiety and depression, and respiratory, food, and skin allergies.2–5
Recent prevalence studies have indicated at least a sixfold increase compared with studies from the 1960s through the 1980s.6–15 Although the reasons for the rise are unclear and may include changes in diagnostic criteria; increased awareness of the condition among parents, medical, and education professionals; variations in measurement; differing applications of the behavioral criteria; a true increase in the population; or a combination of these factors,12,16,17 the increased diagnoses of ASD have important implications for pediatric services, in terms of cost, provision, and organization of care.18–22 Although children with ASD have more physician and hospital use compared with children in general,5,19,21 studies have identified difficulties with accessing needed services23–28 and being satisfied with care.29 The few studies examining family impact have found lower reports of maternal well-being, both physical and mental.30–32
Recently released guidelines, published in 2 reports by the American Academy of Pediatrics, recommend earlier and more frequent surveillance for ASD. The first report on identifying children with ASD recommends that surveillance begin with the first visit to the pediatrician, with universal screening at 18 and 24 months.33 The second report on management of ASD promotes more aggressive educational and behavioral interventions.34 These changes are based on the recognition that, although ASD is not curable, earlier identification and intensive intervention can ameliorate some of the impairments.35–37 The new guidelines could affect the need for, and impact of, services related to ASD. Yet, little is known about the health care experiences and family impacts of children with ASD before the guidelines' release. We believe it is important to understand these experiences and impacts now to better evaluate the impact of the guidelines. In this national study, we used data from the 2005–2006 National Survey of Children With Special Health Care Needs (NS-CSHCN) to examine the health care experiences of children with ASD and impacts on their families and to investigate whether having access to a medical home is associated with less impact on the family.
With funding and direction from the Health Resources and Services Administration Maternal and Child Health Bureau, the Centers for Disease Control and Prevention National Center for Health Statistics (NCHS) conducted the 2005–2006 NS-CSHCN. This random digit-dial telephone survey used the State and Local Area Integrated Telephone Survey platform to assess the health care needs and experiences of CSHCN using approximately equal-sized samples of CSHCN from each state and the District of Columbia. From April 2005 to February 2007, all of the children <18 years of age in 191640 households were screened for special health care needs. One child with special health care needs was randomly selected from households with CSHCN to be the target of the detailed interview. A parent or guardian who knew about the child's health and health care was the respondent. Interviews were conducted in English, Spanish, and 4 Asian languages. The overall weighted response rate (American Association for Public Opinion Research, Response Rate 4 [AAPOR RR4]) was 61.2%. Additional details about the survey methodology are available elsewhere.38 Informed consent was obtained by telephone. The NCHS Research Ethics Review Board approved all of the data-collection procedures.
CSHCN are defined as those “who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”39 For purposes of the survey and this report, CSHCN were identified using the CSHCN Screener and do not include the “at-risk component of the definition.”40 On the basis of parents' answers to 5 stem questions and 2 follow-up questions, this screener classifies children as CSHCN if they have a medical, behavioral, or other health condition that has lasted or is expected to last ≥12 months and that has resulted in functional limitations; elevated needs for medical care, mental health, or education services; or needs for specialized therapy or prescription medications. Analyses are based on screening results from 300910 children, aged 3 to 17 years, including 38l373 CSHCN.
In this study, 2088 CSHCN with ASD, ages 3 to 17 years, were identified on the basis of the question, “To the best of your knowledge, does your child currently have autism or autism spectrum disorder, that is, ASD?” No questions about ASD phenotype were included in the survey. CSHCN with chronic emotional, developmental, or behavioral (EDB) problems were identified from affirmative answers to the following 2 questions from the CSHCN Screener: “Does your child have any kind of emotional, developmental, or behavioral problem for which he/she needs treatment or counseling? Has your child's emotional, developmental, or behavioral problem lasted or is it expected to last 12 months or longer?” CSHCN with autism composed 14.9% of CSHCN with chronic EDB problems. For comparisons presented in this study, CSHCN with “other EDB problems” excluded CSHCN with ASD (n = 9534). CSHCN with ASD and CSHCN with other EDB problems were compared with other CSHCN (OCSHCN).
Health care experiences were assessed through 6 variables on access to care and 1 on satisfaction with care. The 6 access-to-care variables were as follows: unmet need for specific health services, defined as those who reported needing, but not receiving, specific services in the previous year; unmet need for family support services; delayed or foregone care for the child; not having a usual source of care; not having a personal physician or nurse; and any difficulty receiving needed referrals for care. Assessment of satisfaction was conducted with a composite of 5 questions about the extent to which care was family centered; satisfaction was inferred if doctors usually or always spent enough time with the child, listened carefully to the parent, were sensitive to family values and customs, provided needed information, and made the parent feel like a partner.
Family impact was assessed through 5 measures, including whether the child's health care caused financial problems for the family; whether the family needed additional income to cover the child's medical expenses; whether any family members stopped working or cut down on work hours because of the child's health conditions; whether the family paid $1000 or more during the previous 12 months for the child's medical care (excluding health insurance premiums and costs reimbursed by insurance or other payment sources); and whether the family spent ≥10 hours per week providing, arranging, or coordinating the child's health care.
Several variables were included in these analyses to control for confounding relationships. Sociodemographic variables examined were the child's age, gender, race and ethnicity, primary language spoken at home, family income relative to the federal poverty level, household education level, family structure, and geographic region.41 Data on family income were missing for ∼17% of CSHCN and were imputed by NCHS using multiple-imputation methods.42 Type of health insurance was reported as private, public, both private and public, insured (type unknown), or uninsured. Functional ability was measured by the frequency and degree to which the child's condition affected his or her ability to do the things done by other children of the same age. The presence of a medical home was based on an algorithm using 5 components of the American Academy of Pediatrics definition: usual place for care; a personal provider; ease obtaining referrals; coordinated care; and family centered, compassionate, and culturally appropriate care.43 Specifications are available elsewhere.44
The analysis was divided into 4 parts. First, we provided the estimated frequency and prevalence of both SHCN and ASD, overall (ie, among all children in the United States) and by child's age, gender, race or ethnicity, primary language at home, highest household education level, geographic region, and poverty level. Using logistic regression, we examined factors that are most strongly associated with CSHCN with ASD. We also examined the prevalence of ASD among all CSHCN nationally and the factors associated with ASD, adding family structure (a variable that was not available for analyses that included all children in the denominator). The second part looked at the associations between reported conditions and the health care experiences and family impact measures for CSHCN with ASD, CSHCN with other EDB problems, and OCSHCN. Pairwise t tests, unadjusted for multiple comparisons, were used to compare the 3 groups. In the third part, multivariate logistic regressions were used to examine sociodemographic factors associated with each of the health care experiences and family impact measures. Finally, the relationship of medical home with the family impact measures was examined by adding an interaction variable (report of ASD or not by presence of medical home or not) to the logistic regression analyses from the third part of this analysis.
For all of the analyses, data were weighted to be representative of the US noninstitutionalized population of children generally and of CSHCN specifically. These sampling weights are adjusted to account for survey nonresponse and the noncoverage of households without landline telephones.38 Statistical estimates presented in this study were calculated using the Survey Data Analysis software program (SUDAAN [Research Triangle Institute, Research Triangle Park, NC]) to obtain accurate variances from complex sample surveys.45 Logistic regression analyses are presented in terms of adjusted odds ratios (ORs) and 95% confidence intervals (CIs). All of the differences described in the text are significant at the .05 level unless otherwise specified.
In this nationally representative study, the weighted prevalence of CSHCN with ASD was 86 per 10000 (Table 1). This translates into ∼535000 children aged 3 to 17 years with both SHCN and ASD. After adjustment for sociodemographic factors, the odds that a child has SHCN and ASD were ∼50% greater for children 6 to 14 years than for children 15 to 17 years. Boys were ∼3.5 times more likely to have SHCN and ASD, whereas children living in or near poverty were more likely to have SHCN and ASD than were children from families with high incomes (≥400% of the federal poverty level). Non-Hispanic black children and children from families in which English is not the primary language were significantly less likely to have SHCN and ASD than were white children and children from primary English-speaking households, respectively.
Table 1 also shows that ASD is not uncommon among CSHCN; 5.6% of children in this population had ASD. After multivariate adjustment, CSHCN aged 3 to 14 years were more likely to have ASD compared with CSHCN aged 15 to 17 years. Among CSHCN, boys, non-Hispanic white children, and poorer children were at higher risk of ASD than their respective counterparts.
CSHCN with ASD were much more likely to have problems with access to care leading to unmet needs (Table 2). Compared with CSHCN with other EDB problems, CSHCN with ASD were more likely to have unmet needs for specific health care services and family support services, and their families were less likely to be satisfied with the child's care. CSHCN with ASD were also more likely to have unmet needs and delayed care compared with OCSHCN, and their families were less likely to be satisfied with care. In addition, the financial and time impacts on the family from ASD seemed to be significantly greater than the impact from other EDB problems or other SHCN. As with measures of access and satisfaction, children with other EDB problems lived in families with higher levels of impact for each of these measures compared with OCSHCN.
The logistic regression analyses shown in Tables 3 and 4 indicate that these group differences persist even after controlling for sociodemographic differences, the child's functional abilities, and health insurance coverage. CSHCN with ASD are at higher risk for problems with access to care and family centered care, and their families are at higher risk for financial and time burdens. However, there were no group differences for having a usual source of care or a personal physician or nurse, and there were no significant differences between CSHCN with ASD and CSHCN with other EDB problems when considering families' out-of-pocket expenses for the children's medical care. Other factors that were also associated with a greater risk of having access problems included lower income, more limited functional ability, and lack of health insurance.
Relative to CSHCN without ASD, CSHCN with ASD were less likely to have a medical home (48% and 26.5%, respectively). Having a medical home seemed to significantly lessen the financial impacts for families of CSHCN with ASD (Table 5). After controlling for sociodemographic differences, functional ability, and health insurance coverage, CSHCN with ASD who did not have a medical home were significantly more likely than CSHCN with ASD and a medical home to be living in families with greater financial burdens. Moreover, for each measure of financial impact, the difference between CSHCN with ASD and CSHCN without ASD was smaller when the children had a medical home than when they did not have a medical home.
The 2005–2006 NS-CSHCN represents a unique opportunity to examine children with ASD, their health care experiences, and the impact on their families. We found that 86 per 10000 children 3 to 17 years of age were reported to have special health care needs and ASD. Prevalence estimates from other national surveys have been 55 to 57 per 10000 children.10 However, these other survey-based estimates are not directly comparable, because they are based on parent recall of doctor-diagnosed autism at any time in the child's life rather than parents' perceptions that a CSHCN currently has a disorder on the broader autism spectrum. Comprehensive reviews of medical and school records have revealed ASD rates of 66 per 10000 8-year-old children.11
Overall, we found that, among CSHCN, those with ASD had less access to important components of health care and were less likely to receive family centered care. We found no differences among the 3 groups for having a usual source of care or a personal doctor, both indicators of primary contacts. However, families of CSHCN with ASD were more likely to report problems, such as receiving referrals, coordinating care, and obtaining family support services. Others have found that families having a child with ASD had difficulty accessing services, particularly for specialty care.23 Moreover, disparities in access have been reported by race, education, and geographic location,24 as well as disparities in family support group participation.46
To our knowledge, this is the first study to examine the impact of ASD on family finances, employment, and time. We found that a disproportionate number of CSHCN with ASD nationally lived in families that had large out-of-pocket expenditures, experienced financial problems, and reported a need for additional income. As children with ASD age, the cost of health care increases.21,22,47,48 Although a growing number of states and some major employee benefit programs have undertaken significant reforms to improve coverage for individuals with ASD,49,50 most families continue to experience large out-of-pocket expenses. Yet, evidence of significant financial impact does not capture the full impact of having a child with ASD. Parents of more than half of CSHCN with ASD had to reduce or stop work to care for their child, and parents of >25% of CSHCN with ASD spend ≥10 hours weekly providing or coordinating their child's care.
It is noteworthy that families of children with other EDB problems were also at increased risk for difficulties with access to care and had greater family impacts, suggesting the lack of appropriate care in this area. However, families of children with ASD seemed to be more affected, perhaps because children with ASD often have multiple concurrent disorders, which require a broader range of services. This can create additional financial burden as well as increased stress, strain, and mental health issues for families.31,51–53
We found that families of children with ASD who did not have a medical home had a higher burden on almost every indicator than families who had a medical home. Children with complex conditions such as ASD present enormous challenges to a health care system already ill equipped to manage the chronic care needs of children.23,54–56 The apparent benefits of having a medical home found in this and other studies may be attributable to features that go beyond the provision of direct health care, including ongoing, family centered relationships with patients and families and coordination of other medical and community-based services.57–59 As the medical home emerges as the standard of comprehensive health care, additional research can clarify how medical home components lead to improved outcomes and benefits.43,59–61
This study has some limitations. First, the NS-CSHCN is based on parent report; the estimates are limited by parents' knowledge and recollection. Estimates of doctor-diagnosed ASD may differ from estimates of parent-reported ASD presented here. However, previous studies have suggested a high reliability for parent report of autism, and many researchers use parent satisfaction as an indicator for the effectiveness of intervention programs.10,25 Second, the survey focuses primarily on the family's experience with the health care system. It is likely that similar but unmeasured issues exist with access to educational, social, and community services. Third, we did not statistically account for comorbid conditions, because nearly all of the CSHCN with ASD (90%) had other conditions. Instead, we created a separate comparison group of CSHCN with other EDB problems, and we included functional ability in the multivariate analyses. Fourth, because this is a cross-sectional study, causality cannot be established, such as in the association between medical home and financial burdens. Finally, it is important to note that this is a study of ASD among children identified as having a special health care need. Estimates for the prevalence and characteristics of children with ASD in the population of all children may differ.
This study indicates that children with ASD present significant challenges to the current health care system. Unprecedented efforts are underway to determine the causes of ASD, to improve early screening and identification of ASD, to identify evidence-based interventions, and to find a cure for ASD. This study suggests that systems reforms, including national quality improvement initiatives in health care and innovative financing reform, also hold significant promise for improving health care and related services for children with ASD and their families.
We thank Matthew Bramlett, PhD, of the National Center for Health Statistics for programming assistance, Steph Toomer of the Maternal and Child Health Bureau for research support, and Paul Newacheck, DrPH, of the University of California, San Francisco, for thoughtful comments on the article.
- Accepted August 19, 2008.
- Address correspondence to Michael D. Kogan, PhD, Maternal and Child Health Bureau, Health Resources and Services Administration, 5600 Fishers Lane, Room 18-41, Rockville, MD 20857. E-mail:
The opinions expressed in this article are the authors' and do not necessarily reflect the views of the institutions with which the authors are affiliated.
The authors have indicated they have no financial relationships relevant to this article to disclose.
What's Known on This Subject
Children with ASD have more health services use compared with children in general. Studies have identified difficulties with accessing needed services and being satisfied with care. Other studies have also found lower reports of maternal well-being.
What This Study Adds
Disproportionate numbers of CSHCN with ASD lived in families that experienced financial problems. Families of children with ASD who did not have medical homes had a higher burden on almost every indicator.
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