Parents' role in the identification of early signs of autism

There have been many advances in the early identification of autism in recent years, but did you know that the average age of diagnosis is still around 4 years old???!!!. I’m sure you’re thinking the same thing that I am—We need to do better than that!

When it comes to early identification of autism, previous research has shown that one way we can make sure we’re getting all of the information needed to make a well-informed decisions is by including more than one person’s input in the process. And, if we’re talking about the birth to 3 population and we’re talking about autism, we naturally think of including the parent, right? Many of the well-known, most frequently-used screening tools for identifying early signs of autism and communication delays are designed to be completed by the parent, or at least include a parent questionnaire component (think: M-CHAT and CSBS DP).

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But, exactly how should we be using parent input? Should we be putting more or less weight on our clinical observations? When we’re talking about children under two, how accurately is a parent able to identify the early signs of ASD compared to an experienced clinician? If you’ve wondered these same kinds of things, I have some good news for you: the results from this study help to clarify the role that parents play in the early identification of autism. 

This study included 188 siblings of children with ASD and their primary caregivers. Parents completed the Autism Parent Screen for Infants [APSI], and SLPs completed the corresponding Autism Observation Scale for Infants [AOSI] when the children were 12 months, and then again at 18 months. Parent response to the 19 items included in both the APSI and the AOSI (e.g., vocalizing back and forth, showing interest and pleasure, imitating, eye contact) were compared to the clinicians’ responses. And, the results were not only interesting, but also extremely informative: parents identified more behaviors on the APSI that differentiated children diagnosed with ASD from typically-developing children compared to clinicians’ identification of behaviors on the AOSI.

So, based on this information, when it comes to early identification of autism, we really should be viewing parents as a first line of defense. The setting as well as the context of our assessments limit our ability to get all of the information. We need to rely on parents to help us fill in the gaps, adding specificity and depth to our understanding of the developing communication skills of children under 18 months of age. Now more than ever, we need to see parents as our allies, and as key contributors to the assessment process.

Sacrey, et al., (2018). Parent and clinician agreement regarding early behavioral signs in 12- and 18-month-old infants at-risk of Autism Spectrum Disorder. Autism Research, 11(3), 539–547.