Responding to parental concerns about possible offspring autism

"In conclusion, despite early parental concerns, children with ASD [autism spectrum disorder] receive less proactive provider responses to these concerns than children with ID/DD [intellectual disability/developmental delay]. Less proactive/more passive provider responses are associated with delays in diagnosing ASD."

So said the paper from Katharine Zuckerman and colleagues [1] (open-access) who using "nationally representative data from the 2011 Survey of Pathways to Diagnosis and Treatment" tried to answer the following questions: "(1) Did child age at first parental concern and first parental conversation with provider differ among children eventually diagnosed with ASD compared with those diagnosed with DD or ID?; (2) Did provider response to concerns differ among these conditions?; and (3) Among children with ASD, was a more proactive/less reassuring provider response to parental concerns associated with earlier ASD diagnosis?"

What they found has been reported by various media (see here for example) and indicated that when it comes to early parental concerns about the behaviour and development of their offspring: "compared with parents of children with ID/DD, parents of children with ASD reported concerns earlier and had earlier provider conversations about these concerns, but were more likely than to receive reassuring/passive provider responses to those concerns." Indeed, the authors implied that healthcare provider behaviour might be an important factor in 'delayed autism identification'.

As it is in many areas of autism research, we've been here before. In a previous post titled ''You know what boys are like' and the autism pre-diagnostic experience' (see here) I discussed the paper by Sara Ryan & Helen Salisbury [2] (open-access). How for example, the UK experience of autism diagnosis might not be so different from the US experiences talked about by Zuckerman et al specifically with the idea that for some parents, premature reassurance by health professionals about their concerns about their child's behaviour/development may not sit too well with parents and may result in delays in assessment/diagnosis for the child. By saying this, I'm not trying to tarnish medical reputations. Children do not uniformly develop in the same way with lots of stopping and starting in skills learned in the early years which does not necessarily mean 'autism' or any other label. But Zuckerman et al are right to highlight this issue.

From the collected peer-reviewed evidence currently available, we know that there are many variables potentially affecting age of diagnosis when it comes to autism (see here). We also know that autism assessment/diagnosis is one part science and one part of art in terms of the skills of those charged with such tasks and the path does not always run as smoothly as we would wish (see here). Late, delayed or mis-diagnosis however, can be a source of significant stress to both families and children/adults alike (see here) particularly when parental views and opinions have been shown to be pretty accurate when it comes to the appearance of something like autism (see here). I might also direct you to the paper by Sacrey and colleagues at this point [3].

The best way forward? Accepting that resources are being stretched for many different reasons and that assessments cost both in terms of finance and human resources, perhaps give parents/significant others the benefit of the doubt when they say they think there might be 'issues' for someone. Dedicate greater resources towards how screening and assessment could be done more cost-effectively and reliably in the digital age (remember that YouTube work?) and focus on how early diagnosis might offer so much to a person (see here). Oh, and consider that "screening for ASD may need to be repeated multiple times in the first years of life" [4].

As is customary on this day: May the 4th be with you...

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[1] Zuckerman KE. et al. Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis. The Journal of Pediatrics. 2015. 14 April.

[2] Ryan S. & Salisbury H. 'You know what boys are like': pre-diagnosis experiences of parents of children with autism spectrum conditions. Br J Gen Pract. 2012 May;62(598):e378-83.

[3] Sacrey L-A R. et al. Can Parents’ Concerns Predict Autism Spectrum Disorder? A Prospective Study of High-Risk Siblings From 6 to 36 Months of Age. JAACAP. 2015. March 27.

[4] Ozonoff S. et al. Diagnostic stability in young children at risk for autism spectrum disorder: a baby siblings research consortium study. J Child Psychol Psychiatry. 2015 Apr 29.

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Katharine Elizabeth Zuckerman, Olivia Jasmine Lindly, & Brianna Kathleen Sinche (2015). Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis The Journal of Pediatrics : 10.1016/j.jpeds.2015.03.007