NeuroDevNet autism research receives year-end kudos from major organizations in the US

January 13, 2016

Three studies involving Autism Research Group co-lead Dr. Lonnie Zwaigenbaum and colleagues made the top-10 year-end findings lists for major US autism research funding organizations.

The trio of publications all focused on various aspects of early diagnosis of ASD, drawing from the NeuroDevNet-supported Pathways and Baby Siblings cohorts which include both Canadian and American families.

Findings from two of the studies1,2 help address one of the central questions that plague clinicians who diagnose autism, according to Dr. Alycia Halliday of the Autism Science Foundation - that is, “the degree to which symptoms may change over time, both in the short term and the long term.”

With their ability to follow children essentially from birth through toddlerhood among families who already have a child diagnosed with autism, Dr. Zwaigenbaum and colleagues were able to determine that a diagnosis given to a toddler at 18 months, persisted. 

A subgroup of children in the studies, with milder symptoms, was only diagnosed later - at three years of age. In both groups, researchers detected distinct patterns in how delays and impairments presented over time, Halliday noted. “These findings have enormous clinical importance,” she observed, “as primary care doctors need to continue to monitor children who show early signs and symptoms but do not meet all the criteria of a diagnosis.”

Listening to Parents Pays Off

Parents’ observations about their children are not only sensitive, but accurate, according to another study3 involving Dr. Zwaigenbaum that was highlighted by Autism Speaks in its year-end round up.

“[They] are the experts when it comes to their kids and their observations are really invaluable,” Dr. Zwaigenbaum said in their coverage. “In some respects, parents are picking up differences at six and nine months of age.”

“Parents notice something going on before it’s picked up on any actual developmental screen,” said lead author Dr. Lori Sacrey, a NeuroDevNet post-doctoral fellow. “They know what their child is doing, and if they get a feeling that something is not right, as the paper shows, they are likely right. It may not necessarily be autism.”

Co-authors Dr. Susan Bryson at Dalhousie University, and Dr. Jessica Bryan at the Holland Bloorview Research Institute are also part of Autism Speaks Baby Siblings Research Consortium.  The group tracked autism-related concerns of parents seen in clinics in Edmonton, Halifax and Toronto. About 300 families with children aged 6 months to three years of age participated.

Parents filled out forms documenting their concerns around key developmental milestones, said Sacrey. “Parents of children who were later diagnosed had a lot more of these concerns at any given timepoint, or more than two concerns in different domains – a child wasn’t crawling, or didn’t respond to their name, for example. They not only had more concerns overall – parents of kids who were ultimately diagnosed had more concerns at any given time, generally speaking.”

Some, but not all of the families already had children diagnosed with autism. Younger siblings of autistic children are considered to be at higher risk for developing the condition. Other findings from the Baby Siblings cohort helped establish that one out of five baby sibs will have autism. The prevalence of autism in the general population is currently about 1:66.

Parents typically highlighted sensory or motor concerns between six and 12 months, and issues with language and sociability between the ages of 12 and 15 months.

Sacrey and colleagues urge parents and physicians to take these concerns seriously, and to seek further evaluation, and if needed, early intervention therapies. “Parents can play a critical role in improving outcomes and enhancing skill development by learning how to encourage social interaction in everyday caregiving and play,” she said.

“Our study argues for a renewed emphasis on parents’ concerns in early life,” Sacrey added.

Dr. Paul Wang, head of medical research for Autism Speaks, said that even in the absence of parent concerns, it’s important to fully evaluate all younger siblings of children with autism. He highlights that less than half of the parents whose children were diagnosed with autism had expressed concerns about social difficulties. “This finding shows that signs of autism can be so subtle that even experienced parents don’t notice.”

1Zwaigenbaum L, Bryson SE, Brian J, et al. Stability of diagnostic assessment for autism spectrum disorder between 18 and 36 months in a high-risk cohort. Autism research : official journal of the International Society for Autism Research. 2015.

2Zwaigenbaum L, Bauman ML, Fein D, et al. Early Screening of Autism Spectrum Disorder: Recommendations for Practice and Research. Pediatrics. 2015;136 Suppl 1:S41-59.

3Sacrey LR, Zwaigenbaum L, Bryson SE et al.Can Parents’ Concerns Predict Autism Spectrum Disorder? A Prospective Study of High-Risk Siblings From 6 to 36 Months of Age. Journal of the American Academy of Child & Adolescent Psychiatry. 2015; Volume 54 , Issue 6 , 470 - 478