'Do It Yourself' in the parent-professional partnership for the assessment and diagnosis of children with autism spectrum conditions in Hong Kong: a qualitative study.
Hong Kong parents feel left to steer the whole autism assessment alone—give them a clear roadmap and a named contact to fix the break.
01Research in Context
What this study did
Ho et al. (2014) talked to 23 Hong Kong parents who had just finished the autism assessment for their child.
Parents walked the researchers through every step: first worry, referral, long waits, and final diagnosis.
The team recorded the interviews and sorted the quotes into themes about what helped and what blocked the process.
What they found
Parents called the path “do-it-yourself.” They had to hunt for doctors, fill forms alone, and carry records from one clinic to the next.
Most felt staff saw them as pushy, not as partners. Few got clear next-step plans.
The study ends with a short list: give parents a map before the first visit, share contact numbers, and hold a pre-test meeting.
How this fits with other research
Diemer et al. (2023) asked Australian parents of autistic girls and heard the same loneliness, plus extra delays because clinicians still use boy-focused checklists. Together the papers show the problem crosses cultures and genders.
Klein et al. (2024) surveyed 400 Black and multiracial U.S. families and counted provider dismissal as a top barrier. Their numbers back up the Hong Kong stories with data.
Hamama et al. (2021) tried telehealth diagnosis and found most families liked it. This offers one concrete fix for the long trips and lost work days Sw et al. describe.
Why it matters
If you run intake or assessment, treat the parent as the case manager. Hand them a one-page flow chart, a phone list, and a short video link before the first appointment. This tiny step can cut no-shows and boost trust within the first week.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add a five-minute “what happens next” handout to every new referral packet and email it the day the appointment is booked.
02At a glance
03Original abstract
Timely and appropriate care for children with autism spectrum conditions is affected by the interaction between healthcare professionals and parents. Despite the importance of the parent-professional partnership, there is a dearth of cultural-specific data on parent-professional partnership in the Chinese context. We conducted 10 in-depth life-history interviews with parents of children with autism spectrum conditions in Hong Kong who were diagnosed during preschool years. Using an interpretative phenomenological analytic method, five themes were constructed to represent the context of parent-professional partnership in Hong Kong along the pathway of seeking a diagnosis: (a) access to the assessment and diagnosis of autism spectrum conditions, (b) multiple procedures of assessment, (c) consultation prior to diagnosis and assessment, (d) communication of diagnosis and assessment result and (e) post-assessment isolation. Parental narratives highlight the important domains of parent-professional partnership and reflect the complexity of diagnosis and the lack of a cohesive system. For many parents, the assessment procedure was marred by a series of obstacles, which were further exacerbated by a poorly developed parent-professional partnership. Suggestions for parent-professional partnership development include establishing an evidence-based best practice guideline for Hong Kong, creating pre-assessment information workshops for parents to attend and equipping professionals with knowledge about autism spectrum conditions and enhanced communication skills.
Autism : the international journal of research and practice, 2014 · doi:10.1177/1362361313508230