Maternal Education as a Differentiating Factor for Willingness to Participate in ASD Diagnostic Evaluations

Background: With its goal to reduce costs and increase accessibility, healthcare reform has become a popular topic of discussion among US citizens. Maternal education has been linked to decreased access and utilization of healthcare, due to factors such as level of understanding and exposure to information about risk factors of diseases and prevention initiatives, level of information processing, and having the knowledge to communicate effectively with healthcare providers.

Objectives: As part of a large screening study, parents are offered a free diagnostic evaluation; some decline to participate. This study examined whether the decision to decline a free diagnostic evaluation differed by maternal education.

Methods: Parents in the metro-Atlanta area completed the M-CHAT at their child’s well-baby visits (n=10,046).  Of them, 115 screened positive on the M-CHAT, participated in and screened positive on the M-CHAT Follow-up Interview, and were offered a free diagnostic evaluation.  Sixty-four mothers of the at-risk children completed the evaluation (82%), whereas 14 did not participate (18%); 37 were excluded due to physical handicaps that precluded completing the evaluation, not reporting maternal education, someone other than the mother as the respondent, or being unable to contact the family to schedule the evaluation (i.e., phone out of service).  Individuals who declined evaluation included those who were not interested, were non-responsive to phone calls, or withdrew from the study. Maternal education was classified as High (HME; n=49) for mothers who attained at least a Bachelor’s degree and Low (LME; n=29) as attaining anything less than a Bachelor’s degree.   

Results: Of the 64 who completed the evaluation, 44 were classified as HME and 20 as LME, whereas for the 14 who did not complete an evaluation, 5 were classified as HME and 9 as LME.  A chi square test revealed significant group differences in maternal education for those who completed an evaluation and those who declined, χ²(1)=5.368, p=.021.  Sixty-nine percent of the parents who accepted the offer for a free diagnostic evaluation of their child were in the HME group and 64% of those who refused to participate were in the LME group. 

Conclusions: The decision to participate in a free diagnostic evaluation after having being informed about one’s child being at risk of a developmental delay was related to maternal education.  Other factors may contribute to declining to participate, including cost of transportation (although in this study parents were offered compensation for such expenditures) and difficulty taking off time from work.  However, given that level of maternal education, which is often used as a marker for socioeconomic status, is related to exposure to and understanding of preventative healthcare information, these findings suggest that changes in policy (e.g., universal screening) might not be enough to affect all families.  Although universal screening is an excellent first step, individuals must first be educated on the importance of and their rights to healthcare, and specifically on the benefits of early detection of autism and other developmental delays.  Without understanding these benefits, specialized healthcare services might be underutilized, particularly by families from low SES backgrounds.