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Diagnosing autism: Contemporaneous surveys of parent needs and paediatric practice
Sabine Hennel1, Cathy Coates1,2,3, Christos Symeonides4,5,6
1Department of Developmental Medicine and Victorian Paediatric Rehabilitation Service, Monash Children's Hospital, Melbourne, Australia.
Insights
Parents desire more autism diagnosis information than clinicians provide. A tailored autism action plan with written materials can enhance parental understanding and satisfaction.
Area of Science:
- Developmental Pediatrics
- Child Psychology
- Autism Spectrum Disorder Research
Background:
- Parental information needs regarding autism diagnosis often differ from clinician practices.
- Understanding this gap is crucial for improving families' post-diagnosis management and adjustment.
- Limited research exists on the concurrence between parental expectations and clinician delivery of autism diagnostic information.
Purpose of the Study:
- To compare parents' experiences and preferences with paediatricians' reports on autism diagnosis delivery.
- To assess the information provided at diagnosis (spoken vs. written) and its alignment with parental needs.
- To identify the types and usefulness of resources accessed by families after an autism diagnosis.
Main Methods:
- Utilized parent and paediatrician surveys for a mixed-methods approach.
- Included parents of children aged 1.5-18 years diagnosed with autism and their paediatricians.
- Collected quantitative and qualitative data on diagnosis delivery, information provision, and post-diagnosis resource utilization.
Main Results:
- Parents reported more adequate discussion time (71%) than paediatricians (51%).
- High parental importance was placed on information about allied health (98%) and diagnosis meaning (98%), yet infrequently provided by paediatricians (22% and 42%, respectively).
- Allied health services were the most critical post-diagnosis information source (83%).
Conclusions:
- Parents require more comprehensive information than a single diagnostic consultation can offer.
- A structured 'autism action plan' incorporating written materials could significantly improve parental understanding and satisfaction.
- Addressing information gaps post-diagnosis is essential for effective autism management and family adjustment.
Aim:
Concurrence between parents' information needs and clinicians' practice when diagnosing autism is unknown but may influence families' uptake of management and adjustment. We aimed to compare parents' experience and preferences with paediatrician report of (i) diagnosis delivery and (ii) information given at diagnosis and identify types and usefulness of resources accessed by families post-diagnosis.
Methods:
The design used for the study are parent and paediatrician surveys. Participants are parents of children aged 1.5-18 years, diagnosed with autism between 01 January 2010 and 30 September 2012 and their paediatricians who are members of the Australian Paediatric Research Network. Study-designed quantitative and qualitative questions about diagnosis delivery and information given at diagnosis (written and spoken vs. neither) and parent perceived importance and harms of information accessed post-diagnosis.
Results:
Paediatricians (53/198 (27%)) identified 1127 eligible families, of whom 404 (36%) participated. Parents were more likely to report receiving adequate time to discuss diagnosis than paediatricians (71 vs. 51%). Parents (98%) rated information about accessing allied health professionals and the meaning of diagnosis as most important, yet paediatricians offered written or spoken information about each infrequently (allied health: 22%; diagnosis: 42%). Post-diagnosis, allied health was the most important source of information (83%). Harmful resources conveyed helplessness or non-evidenced-based therapies, but few parents (14%) reported this.
Conclusions:
Parents want more information than can be conveyed in a single diagnostic consultation. Developing a tailored 'autism action plan' with written materials could improve parents' understanding of and satisfaction with children's autism diagnoses.
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