Factors Impacting Parental Belief of an Autism Spectrum Disorder Diagnosis Pre-Evaluation

Background:

 Parental recognition of child symptoms is one of the first levels of the help-seeking process (Goldberg & Huxley, 2003). Studies have shown parents recognize signs of autism much earlier than it is diagnosed (American Psychiatric Association & American Psychiatric Association, 1994). Once symptom recognition leads to seeking services, little is known about parents personal anticipation or belief of their child’s autism spectrum disorder (ASD) status before an evaluation is made by the clinician to rule ASD in or out. Identification of the factors associated with parent’s pre-evaluation beliefs and their relationship with the final clinical diagnosis can enhance clinicians’ ability to contextualize results of diagnostic evaluations and promote parent acceptance of diagnosis and referral guidance.

Objectives:

Assess factors affecting parent belief about anticipated child diagnosis prior to ASD evaluation and subsequent factors influencing receiving an ASD diagnosis.

Methods:

Participants included 1035 parents whose children were evaluated at a university-based ASD specialty clinic. Mean child age was 7.12 years (range =0.5-18.5; 18.5% female). Parents completed intake and Background and History Questionnaire prior to their child’s evaluation during the period from June 2014 to August 2016. Through this intake process, they answered a question about “whether they believe their child has ASD despite clinician diagnosis” and completed the Child Behavior Checklist (CBCL; Achenbach, 1991). Children were then evaluated by a multidisciplinary team to rule in or out an ASD diagnosis using DSM – IV criteria. 909 children (69.76%) had a confirmed ASD diagnosis (ASD group), while in 394 (30.24%), ASD was ruled out (non-ASD group). Adjusted odds ratios (aOR) were obtained using multivariate logistic regression to predict factors associated with agreement between parents’ pre-evaluation belief that their child had ASD and ASD clinical diagnosis.

Results:

Pre-evaluation rate of parents believing their child had ASD was high (81%). Parental belief (aOR=1.68, p=0.007), above all factors, was positively associated with clinician diagnosis. Child age (6-9yrs:aOR=2.07, p= 0.001; 10-13yrs:aOR=2.13, p=0.006; >14yrs:aOR=3.34, p=0.01), behavior (aOR=2.22, p<0.001) and previous ASD diagnosis (aOR=1.95, p=0.001) were significantly positively associated with pre-evaluation parent belief of ASD. However, having an older child (6-9yrs:aOR=0.47, p<0.001; 10-13yrs:aOR=0.40, p<0.001; >14yrs:aOR=0.45, p=0.001) and more behavior problems (per CBCL; aOR=0.65, p<0.001) was associated with lower odds and a previous ASD diagnosis (aOR=5.78, p<0.001) was with higher odds of receiving a clinical diagnosis. Highest parent-clinician agreement was seen in kids >6yrs and those with low behavior problems (%agreement=72%)

Conclusions:

As this sample was seeking clinical services, parent belief status is skewed toward belief that the child has ASD. Half of the sample was below 6 years. Those over the age of 6 are more likely to be attending a structured educational setting providing opportunities for parents to receive more targeted feedback regarding their child from educators. This feedback along with parental observation of same-age peers may influence parents to consider ASD as an explanation for longstanding developmental concerns. Lower diagnosis rate in the older children and those with more behavioral issues might be reflective of other etiologies with behavioral phenotypes similar to ASD and need differential diagnosis.