The Role of Professional Responses to Parental Concern in Predicting the Timeliness of Autism Spectrum Disorder Diagnosis

Background:  A substantial gap exists between the age that a reliable and accurate diagnosis of Autism Spectrum Disorder (ASD) is possible, and the age that the majority of children currently receive a diagnosis.  Previous research has identified factors associated with the age at diagnosis of ASD; including clinical features, parental concerns as well as community level characteristics such as socioeconomic status and service availability. Families’ interactions with health services may also act as a barrier or enabler to early diagnosis; with later diagnoses found to be associated with a greater number of professional consultations. However, less is known about the role of professionals’ behaviour and responses to parental concerns in predicting the timeliness of ASD diagnosis.

Objectives:  This study aimed to examine the role of families’ interactions with health services and professional responses to parental concerns in the prediction of the timeliness of ASD diagnosis.

Methods: 185 parents/caregivers with a child with ASD completed a purpose-developed online survey which included questions on child characteristics, severity of ASD symptoms (measured using the Social Communication Questionnaire), family demographics, parental concerns, type and number of professionals consulted and professional responses. Correlations were initially conducted to examine relationships between variables and hierarchical regression analyses were conducted to predict the timeliness of ASD diagnosis. The final paper will include data collected up until the end of December 2015.

Results:  On average, parents’ reported becoming concerned about their child’s development at 25 months, first seeking professional advice at 35 months, and receiving an ASD diagnosis at 63 months. Shorter delays in the time between seeking professional advice and obtaining a diagnosis were associated with more active professional responses (e.g., raising concerns about child development, making a referral, administering a screening tool or developmental assessment). While more passive professional responses (e.g., advising the child was too young to diagnoses, not to worry or to wait and see) were associated with greater delays in ASD diagnosis. Controlling for child age at the time of the survey, active responses to parental concerns and the overall number of professional consultations were significant unique predictors of timeliness of ASD diagnosis, with the overall model accounting for 52% of variance. Severity of ASD symptoms, family socio-economic characteristics and family history of ASD were not meaningfully associated with timeliness of diagnosis.

Conclusions: Substantial delays were reported between parents first seeking professional advice regarding their child’s development, and child age at ASD diagnosis. Active professional responses to parental concerns may reduce delays in diagnosis. These findings reiterate the importance of developmental surveillance, which provides a structure within which parents and primary health care professionals can raise concerns regarding a child’s development.