Access to Care: Familial and Cultural Variables Associated with Limited Service Access in Individuals with ASD

Background:  Although there are a wide variety of treatment options that can positively impact a child with Autism Spectrum Disorder (ASD), accessing necessary services can be difficult.  In addition to variables assessed in previous literature, such as overall availability, contact accessibility, appointment accessibility, and geographic accessibility (Hall, Lemak, Steingraber, & Schaffer, 2008), we must also explore economic barriers, familial stressors, and cultural implications.

Objectives:  To provide preliminary data on factors influencing access to care from a survey of parents/caregivers of individuals with ASD, other neurodevelopmental disorders, and childhood psychiatric disorders.

Methods:  Data was collected from 469 respondents in total ranging from infancy to 50 years of age.  Of those respondents, 243 identified an ASD diagnosis according to the DSM-IV-TR, which includes autism, Asperger’s disorder, and pervasive developmental disorder.  Examples of diagnoses in the comparison sample included Speech and Language Disorders, Mental Retardation, Obsessive Compulsive Disorder, and Oppositional Defiant Disorder.  In addition to demographic questions regarding race, education level, and income level, questions focused on the treatments being sought, payment type (i.e., public insurance, private insurance, or self-pay), and services covered. 

Results:  Data was collected from 469 respondents in total ranging from infancy to 50 years of age.  Of those respondents, 243 identified an ASD diagnosis according to the DSM-IV-TR, which includes autism, Asperger’s disorder, and pervasive developmental disorder.  Examples of diagnoses in the comparison sample included Speech and Language Disorders, Mental Retardation, Obsessive Compulsive Disorder, and Oppositional Defiant Disorder.  In addition to demographic questions regarding race, education level, and income level, questions focused on the treatments being sought, payment type (i.e., public insurance, private insurance, or self-pay), and services covered. 

Conclusions:  Accessibility to interventions is an absolute imperative; however, the results indicate that families are not able to utilize necessary treatments due to cost, familial stressors, and cultural/ethnic differences.