title: Diagnosing autism: Contemporaneous surveys of parent needs and paediatric practice.
abstract: OBJECTIVE
  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.
authors.affiliation: Department of Developmental Medicine and Victorian Paediatric Rehabilitation Service, Monash Children's Hospital, Melbourne, Australia.
authors.forename: Sabine
authors.initials: S
authors.lastname: Hennel
authors.affiliation: Department of Developmental Medicine and Victorian Paediatric Rehabilitation Service, Monash Children's Hospital, Melbourne, Australia.|Department of Paediatrics, Monash Children's Hospital, Melbourne, Australia.|Latrobe Regional Hospital, Melbourne, Victoria, Australia.
authors.forename: Cathy
authors.initials: C
authors.lastname: Coates
authors.affiliation: Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.|Centre for Community Child Health, The Royal Children's Hospital, Melbourne, Victoria, Australia.|Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia.
authors.forename: Christos
authors.initials: C
authors.lastname: Symeonides
authors.affiliation: Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.|Centre for Community Child Health, The Royal Children's Hospital, Melbourne, Victoria, Australia.
authors.forename: Alisha
authors.initials: A
authors.lastname: Gulenc
authors.affiliation: Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.|Centre for Community Child Health, The Royal Children's Hospital, Melbourne, Victoria, Australia.
authors.forename: Libby
authors.initials: L
authors.lastname: Smith
authors.affiliation: Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.|Centre for Community Child Health, The Royal Children's Hospital, Melbourne, Victoria, Australia.
authors.forename: Anna Mh
authors.initials: AM
authors.lastname: Price
authors.affiliation: Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.|Centre for Community Child Health, The Royal Children's Hospital, Melbourne, Victoria, Australia.|Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia.
authors.forename: Harriet
authors.initials: H
authors.lastname: Hiscock
mesh_terms: D000293:Adolescent; D000328:Adult; D001315:Australia; D001321:Autistic Disorder / Q000175:diagnosis*; D002648:Child; D002675:Child, Preschool; D005260:Female; D019538:Health Care Surveys; D006301:Health Services Needs and Demand; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents / Q000523:psychology*; D010372:Pediatrics
keywords: Australian Paediatric Research Network; autism spectrum disorder; paediatric; parent survey