Parental Experiences with Early Identification and Initial Care for their Child with Autism: Tailored Improvement Strategies.
Michelle I J Snijder, Ilse P C Langerak, Shireen P T Kaijadoe and 5 others
PMID 34468907WHAT IT FOUND
Parents of children with autism reported feeling their concerns were dismissed by healthcare professionals, leading to stigma and isolation.
They identified knowledge gaps in first-line care and system fragmentation as major barriers to early diagnosis and support.
Key findings
01Parents reported more severe initial concerns about their child's development than first-line healthcare workers, with mothers reporting significantly higher concern levels than fathers.
02A major theme was the lack of knowledge and expertise regarding early signs of ASD among preventive care professionals and general practitioners, who often focused on average milestones rather than behavioral red flags.
03Parents described feeling judged and stigmatized by family, friends, and healthcare professionals, who attributed their child's divergent behavior to parenting style rather than recognizing ASD symptoms.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The survey had a low response rate (estimated < 15%) and no reminders could be sent, which may bias the sample toward those with stronger opinions or experiences. The focus group sample was small (10 participants), highly educated, and predominantly native Dutch mothers, limiting generalizability to other socioeconomic or cultural groups. The study relied on retrospective self-report, which is subject to recall bias. The sample was limited to parents of children diagnosed with ASD, excluding parents of children who were never diagnosed or those where the professional raised concerns first.
Declared interests
The authors declare no conflicts of interest. The study was supported by the Dutch Autism Foundation and the Karakter Child and Adolescent Psychiatry University Centre.
The easy way to misread this
Do not interpret the 26-month average delay as a universal standard or a fixed metric for all patients. This figure is derived from a small, specific sample of Dutch parents with high educational levels and may not reflect the experience of other populations or healthcare systems.