Article Examines the Health Care Experiences of Children with Autism and the Family Impact of Autism

December 11, 2008

"This study indicates that children with ASD [autism spectrum disorder] present significant challenges to the current health care system," state the authors of an article published in the December 2008 issue of Pediatrics. 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. Children and adolescents with ASD also have higher rates of several comorbidities. In the study described in this article, the authors used data from the 2005-2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) to examine impacts on families of children and adolescents with ASD and to investigate whether having access to a medical home is associated with less impact on the family.

For the study, 2,088 children and adolescents ages 3-17 with special health care needs and ASD were identified. Health care experiences were assessed through six variables on access to care (unmet need for specific health services, unmet need for family support services, delayed or foregone care, not having a usual source of care, not having a personal physician or nurse, and any difficulty receiving needed referrals for care) and one variable on satisfaction with care. Family impact was assessed through five measures (whether the child's health 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 $1,000 or more during the previous 12 months for the child's medical care, and whether the family spent 10 or more hours per week providing, arranging, or coordinating the child's health care.

The authors found that

* The weighted prevalence of children and adolescents with special health care needs and ASD was 86 per 10,000.

* Compared with children and adolescents with other emotional, developmental, or behavioral (EDB) problems, those 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 care.

* The financial and time impacts on the family from ASD seemed to be significantly greater than the impact from other EDB problems or other special health care needs.

* Relative to children and adolescents with special health care needs without ASD, those 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 children or adolescents with ASD.

The authors conclude that "system reforms, including national quality improvement initiatives in health care and innovative financing reform..., hold significant promise for improving the health care and related services for children with ASD and their families."

Kogan MD, Strickland BB, Blumberg SJ, et al. 2008. A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics 122(6):e1149-e1158.

Abstract available here (

Additional information is available from the following MCH Library resources:

- Autism Spectrum Disorders:


- Children and Adolescents with Special Health Care Needs: