Parents’ Experiences and Views of Screening and Diagnostic Assessment for Autism Spectrum Disorders (ASD) in Hong Kong: A Mixed-Methods Study

Background: A recent increase in recognition and identification of autism spectrum disorders (ASD) calls for system-level responses to addressing unmet needs of individual with ASD through the establishment of a well-integrated infrastructure for healthcare, education, social-welfare and employment. WHO states inappropriate services and a lack of resources for ASD as unjust deprivation towards vulnerable populations representing societal stigma. The first step is to develop a guideline of ASD screening, referral, diagnosis and treatment to facilitate early detection and treatment.

Objectives: The objective of this mixed-methods study was to systemically assess ASD service provisions in Hong Kong by exploring the pathway from screening, diagnosis and post-diagnosis interventions among parents of children with ASD. Narrative analysis of their experience and views aimed to represent direct sources of service-user feedbacks, informing the development of a local guideline.

Methods: A community-based survey was conducted among 249 parents of children with ASD. The instrument was developed based on the guideline for ASD diagnostic pathway of the UK National Institute for Health and Care Excellence (NICE), which includes six key milestones: (1) parental first awareness, (2) referral for assessment, (3) diagnostic assessment, (4) consultation on diagnosis, (5) post-diagnosis follow-up, and (6) entry to special education needs (SEN) program. Correlates of the key milestones were examined. The survey also included open-ended questions about their experiences and views on each key milestone to contextualize the quantitative findings.

Results: About half of parents (51%) were first aware of child’s differences by the age of 2 and 70% sought professional help within 3 months. Fifty six percent saw multiple professionals for referral. Significant delays were reported between screening/referral (R), diagnosis (D), post diagnosis follow-up (F), and entry to SEN: 88% were delayed between R and D (>3 month), 60% D and F (>6 weeks), and 70% D and SEN (>3 months). Low income was associated with longer time in access to diagnosis and follow-up. While a shorter time in access to diagnosis was reported after the launch of behavioral surveillance, no effect of the surveillance was found in the time for access to F/SEN. Parental satisfaction was significantly associated with quality of assessment and shorter time for treatment. Parents expressed difficulty and high anxiety with coping with uncertainty while waiting for assessment. Experience of multiple consultations for referral and long delay caused lack of confidence in ASD treatment and care as they felt “missing golden times.” They expressed the special need for family needs assessment when they were given ASD diagnosis for child.

Conclusions: The findings indicated considerable delays and lack of coherence and resources in ASD assessment and SEN provisions in Hong Kong. Policy of standard care should provide guidelines of (1) monitoring pre-school children for ASD in pediatric settings, (2) how to inform parents of ASD symptoms and what information to be provided for waiting time, (3) comprehensive needs assessment for child and family, (4) evidence-based treatments, and (5) follow-up protocol for re-assessment on child development and needs.