Post-Diagnosis Family Experiences in a Pre-Elementary Age Population

Background:  Recognizing autism spectrum disorder (ASD) in children as early as possible is critical to putting in place proper supports and referral services. After a diagnosis, coordinating those services and navigating complex service systems has been shown to impact child development as well as family life.

Objectives:  The objectives of this study are twofold: 1) Examine associations among socio-economic variables, and post-ASD diagnosis access to services, and 2) Determine how families’ workforce participation is impacted following an ASD diagnosis.

Methods:  Survey data from a statewide ASD-specific needs assessment was used for this study. Respondents included 279 parent/caregivers with a child with ASD who was pre-elementary school age. The survey included detailed questions on family experience before, during and after an ASD diagnosis. Chi-square tests of significance were conducted to determine differing distributions among variables of interest.

Results:  Most (82.7%) respondents were White/Caucasian. Average age of the child was 4.5 years old and 80.3% were male. Over half (60.1%) of parents were college educated with a diverse range of household incomes in the sample; 31.4% earned less than $40 thousand, 32.6% earned $40-$79 thousand, and 36% earned $80 thousand or more.  Most (72%) children were referred to Early Intervention services after receiving a diagnosis of ASD. Minority children were referred to Early Intervention at a significantly higher proportion (87.5% compared to 68.7% of White/Caucasian children, p = .008). Less than half (48%) of children who received an ASD diagnosis had a referral for a follow up appointment with their physician. There were no significant differences across major demographic variables (including race/ethnicity, parental education, and family income) in terms of referral to follow up appointments. After the ASD diagnosis, most families (82.1%) decreased work hours or stopped working outside the home. Preliminary analysis shows no significant difference in workforce participation after an ASD diagnosis among demographic variables.

Conclusions: The period of time following an ASD diagnosis is critical and has ramifications for long-term outcomes in children. Often, the ASD service system is complex and difficult to navigate for parents with newly diagnosed children. Our sample shows interesting distributions of post-diagnosis experience across demographic characteristics. Of note, children from minority populations were referred to Early Intervention (either private or state-funded) at a higher rate than Caucasian children. More examination is needed to investigate why individuals from minority backgrounds are using Early Intervention at a higher rate, and if non-minority populations are seeking other avenues of support. Further examination is also needed to determine the full effect of an ASD diagnosis on workforce participation, as the majority of our study sample had their workforce participation reduced for the respondent or their partner, which may impact quality of life for the family.