Adherence and Psychological Evaluation Recommendations for Young Children with ASD

Background:  American Academy of Pediatrics [AAP] guidelines endorse universal screening for Autism Spectrum Disorders (ASD) at 18- and 24-months of age, and at any point the caregiver expresses concerns (Johnson & Myers, 2007). These screenings, in combination with campaigns aimed at increasing awareness of the earliest signs of ASD, (CDC, 2010) are intended to enable parents and clinicians to act on developmental concerns early (Warren & Stone, 2011). Al-Qabandi, Gorter & Rosenbaum (2011) reviewed the early ASD detection literature and concluded there was not sufficient evidence to support routine population-based screening programs for young children with ASD. The authors reported that accessing and initiating effective therapies within communities might prove difficult given cost and time barriers. Additionally, they noted the dearth of published studies addressing families’ and children’s adherence with recommended interventions (2011).

Objectives:  The current study represents a brief empirical evaluation of the ability of a clinical sample to implement recommendations following an ASD diagnosis. 

Methods:  This sample was drawn a larger study examining family functioning following an ASD diagnosis (see Taylor & Warren, in press). We examined not only the types of interventions implemented but also the association of implementation with parenting distress. Seventy-five mothers of young children diagnosed with ASD through a university-based preschool autism clinic completed surveys regarding access to recommended services as well as maternal mental health and distress.

Caregivers were presented with a list of common clinic interventions and asked indicate the specific recommendations they had implemented. Original recommendations made by the diagnosing clinician were extracted from evaluation reports by blinded research assistants. An overall non-weighted percentage of recommendations implemented variable was calculated.

Mothers were asked to complete the Center for Epidemiological Studies – Depression Scale (Radloff, 1977) the Beck Anxiety Inventory (Beck et al., 1988), and the Parenting Stress Index–Short Form (Abidin, 1995) to measure psychological and parenting distress.

Non-parametric correlations were conducted to determine bivariate relations between percentage of services implemented and measures of parental anxiety, depression, and parenting stress.  

Results:  A substantial majority of mothers (72%) were able to successfully implement most interventions (i.e., >75% of offered recommendations). Mothers reported considerable success in implementing educational and/or early intervention services (Individualized Education Program, 85.7%; Individualized Family Service Plan, 95.5% and conducting specific readings, 94.5%).  Mothers reported moderate success implementing autism clinic follow-up visits (74%), speech/language intervention (74.2%), occupational therapy (67.7%), and medication consultation (66.7%).  Only a minority of families reported the ability to implement recommendations regarding ABA based intensive intervention (42.1%), sleep evaluations (30.8%), and genetic testing (29.6%). Challenges implementing recommendations within this sample were not significantly associated with differences in maternal depression, anxiety, or parenting stress.

Conclusions:  Results suggest that despite numerous and significant barriers toward accessing some recommended services following diagnosis of ASD, many families will be successful in implementing many core services. While some categories of service appear very challenging to access (e.g., intensive levels of ABA-based intervention), failure to implement services may not always be powerfully related to caregiver distress.