Variables Associated with Services Sought By Caregivers of Individuals with Autism Spectrum Disorder

Background: Autism spectrum disorder (ASD) is a neurodevelopmental disorder commonly seen with language impairment, intellectual disability, medical conditions, and psychiatric disorders. Currently, a myriad of treatment options are available, reflecting the phenotypic heterogeneity within ASD. Treatment barriers in ASD are well established in literature and access to services can be impacted by patient, family, provider, and policy-level factors. Another important factor for optimal treatment may include treatment choices made by families caring for individuals with ASD.

Objectives: To explore potential child and familial demographics associated with treatments sought by families caring for individuals with ASD.

Methods: Parents of individuals with ASD completed online survey questions related to services sought. The services were categorized under four service groups: Educational, Mental Health (MH), Medical Services (MED), and Complementary and Alternative Medicine (CAM). Data were analyzed using IBM Statistical Package for the Social Sciences 20.0 (SPSS). Descriptive information was obtained by computing frequency statistics for the sample to gather basic demographic information and number of services of sought. Chi-square tests were used to measure differences in services sought by individual characteristics including gender, diagnosis, and race, as well as family characteristics such as family income, insurance, parental education, and parental employment.

Results: On average, families sought approximately 8 services. Significant differences in the number of services sought were seen in diagnosis, race, and parental employment. Individuals with ASD and comorbid psychiatric conditions sought more services than ASD alone. Asians sought the least number of services and Caucasians sought the most number of services. Lastly, families with employed parent(s) sought more services compared to families with unemployed parent(s). The type of services sought by families varied by child gender, diagnosis, race, parental employment status, and having private insurance. Caregivers of male individuals with ASD sought Educational and Medical services at a higher rate relative to females. Individuals with comorbid psychiatric conditions sought more Educational, MH, and MED services than ASD alone. Asians were least likely to seek MH services while Caucasians were most likely. For medical services, African-Americans sought more MED services. Families with employed parent(s) sought more Educational, MH, MED, and CAM than families with unemployed parent(s). Lastly, having private insurance increased the rate of Educational, MH, and MED services seeking behavior.

Conclusions:  Results suggest diagnosis, race, and parental employment may influence the number of services sought by families caring for individuals with ASD. Furthermore, the type of services sought may be differentiated by gender, diagnosis, race, parental employment status, and having private insurance. Overall, there seems to be significant variability in treatment choice and utilization among families caring for individuals with ASD. Little is known on how families decide on which services to use, but is likely a complicated process with many factors influencing their decisions. Our findings suggest culture-specific variability in service seeking behavior, and a role for culturally sensitive diagnostic and educational programs in minority communities to reduce disparities and improving awareness about ASD-related treatment.