A sweeping review of autism studies from around the world by researchers at Holland Bloorview’s Bloorview Research Institute – the first of its kind with an international focus – has found that parents face many hurdles as they navigate through their child’s autism assessment, diagnosis, intervention and supports in the healthcare system.

Dr. Amber Makino, a physician at Holland Bloorview and the primary author of the report, and her research team wanted to examine the current research literature that exists on parent perceptions of receiving an autism spectrum diagnosis for their child.  

“Parents are the key stakeholders in this whole process. While making an accurate diagnosis may be important, we want the process to be acceptable to parents. It sets the tone for these families’ journey and their future interactions with other health-care providers.”

Increasing demand for autism diagnoses

According to Autism Ontario, autism spectrum disorder (ASD) is “a lifelong neurodevelopmental condition that affects the way a person communicates and relates to people and the world around them. It exists in all cultures, ethnicities, races, and gender identities.”

In Canada, 1 in 66 children and youth are diagnosed with ASD, according to the National Autism Spectrum Disorder Surveillance System.

The review notes that ASD “has steadily increased in reported prevalence over the past decade, leading to growing pressure on professionals and systems to provide timely and accurate diagnoses.”

From assessment to post-diagnosis: the long journey

Dr. Makino reviewed 121 studies conducted in mostly Europe and North America from 1994 to 2020 that examined parent perspectives of their journey before, during and after an autism diagnosis. The majority of the studies took place in high-income countries within these continents.

Four key components of the diagnostic experience were identified: the journey to assessment; the assessment process; delivery of the diagnosis and feedback session with parents; and provision of information, resources and support.

Of all the parts of the diagnostic experience, parental perceptions of their journey to their child’s assessment was the most studied aspect, with 70 per cent of the articles containing findings related to this theme. Overall, studies found that parents experienced many delays in getting an assessment due to long wait times (which ranged from 12 to 55 months), lack of autism expertise or a misdiagnosis by health-care providers with whom parents consulted.

Nearly a third of the studies looked at the delivery of the diagnosis and the feedback session with parents or caregivers. These studies found caregivers wanted their health-care team delivering the diagnosis to be empathetic, and to highlight positive attributes about their child. Parents also wanted realistic yet optimistic statements on their child’s prognosis and any interventions that would be helpful. Finally, parents expressed the desire to have time to process the diagnosis and ask questions about what they might expect in their child’s future.

Parents should be Equal Partners

Based on the findings from the review, Dr. Makino says that clinicians and other health-care practitioners should work closely with parents and caregivers as close partners during their autism diagnosis journey.

“We shouldn’t ignore parents’ concerns, but rather, take them seriously. There is research to show that parents are more accurate in identifying relevant behaviours in their children than a health-care provider, who may have met them for only a short period of time.”

Dr. Makino recommends that families should be provided with supports while they are waiting for their child to be assessed as parents report waiting to be an especially anxiety provoking time.

The scoping review, Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review, was published online in February in the Review Journal of Autism and Developmental Disorders. Dr. Amber Makino is the primary author of the review. The other authors are Dr. Melanie Penner (principal investigator), Laura Hartman, Gillian King, and Pui Ying Wong, all affiliated with Holland Bloorview Kids Rehabilitation Hospital.