Parental Experiences in Autism Spectrum Disorder Diagnosis
Summary
Parents navigating the diagnostic pathway for their child’s autism spectrum disorder (ASD) often encounter prolonged waiting times, inconsistent assessment practices and variable access to information and support. The journey typically begins with parental concerns about development or behaviour and extends through referral, multi-disciplinary assessment, feedback of the diagnosis and post-diagnostic support. Throughout this trajectory, parents describe a complex emotional landscape, ranging from relief at receiving a formal explanation for their child’s difficulties to distress arising from delays, uncertainty and inadequate communication. Clarity of assessment procedures, sensitivity in delivering the diagnosis and provision of tailored resources have been shown to bolster parental satisfaction and confidence. Conversely, fragmented services and a lack of coordinated care can exacerbate parental stress and hinder timely intervention. Recent research highlights the need for integrated care pathways, transparent time-to-diagnosis standards and parent-centred communication strategies to streamline access, reduce inequities and enhance outcomes for families across diverse settings.
Research from Nature Portfolio
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Parental Experiences in Autism Spectrum Disorder Diagnosis publication trend
The graph below shows the total number of articles in parental experiences in autism spectrum disorder diagnosis across all publications each year (not limited to Nature Index journals).
Technical terms
Diagnostic trajectory: The sequence of stages from initial parental concerns to final diagnosis and subsequent support for a neurodevelopmental condition.
Scoping review: A systematic method to map key concepts, types of evidence and research gaps on a broad topic.
Multi-disciplinary assessment: A coordinated evaluation by professionals from different disciplines (for example, psychology, speech therapy and paediatrics) to determine the presence of ASD.
References
- Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review. Review Journal of Autism and Developmental Disorders (2021).
- The diagnostic trajectory in autism and intellectual disability in Quebec: pathways and parents’ perspective. BMC Pediatrics (2021).
- Autism: impact of the diagnosis in the parents. Jornal Brasileiro de Psiquiatria (2020).
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