1. Alison A. Spadafora, Marcia N. Gragg, and Sylvia L. Voelker
Navigating the Autism Diagnostic System: Parents’ Experiences in Ontario
Alison A. Spadafora, Marcia N. Gragg, and Sylvia L. Voelker
Department of Psychology, University of Windsor, Windsor, ON, Canada N9C 3P4
children with ASD were diagnosed at significantly younger ages over time (date of birth & year of diagnosis, r = -.39, p<.01)
Introduction
Early diagnosis of Autism Spectrum Disorders is crucial, as intervention is more effective at early ages (Harris & Handleman, 2000).
Parents are often concerned long before their children are diagnosed (Baghdado, Picot, Pascal, Pry & Aussilloux, 2003; De Giacomo & Fombonne, 1998; Howlin & Moore, 1997).
Parents’ experiences in attempting to obtain a diagnosis for their child need to be heard.
Results
the biological mother was the first to be concerned for 75% of the children
average age of child at first concern was 19.7 months ( months)
Objectives
To identify;
early symptoms recognized by parents
parents’ help-seeking behaviours
professionals’ reactions to parents’ concerns
parents’ ideas to improve the diagnostic system
35 parents reported 48 barriers to help-seeking
10.4 months elapsed on average before a first appointment with a health care practitioner
during the delay, 43.9% of parents made an appointment with a health care practitioner, 19.5% asked friends or family for advice, and 16.3% looked for information in books, magazine and the Internet
Method
Participants
79 parents
95% mothers
average age 39.9 years ( years)
91% Caucasian
81% born in Canada
86% married
86% had some college/university or more
high SES (Hollingshead score = )
81 children
70 males, 11 females
mean birth year was 1995 ( )
median year of diagnosis was 2000
95% born in Canada
52 diagnosed with Autistic Disorder
23 with PDDNOS
6 with Asperger’s Disorder
recruited at parent meetings, through Autism Society Ontario chapters, by mail and flyers
response rate was 30.7%
Measures
Diagnostic Experiences Questionnaire
demographic information
63 parents reported 133 factors which facilitated help-seeking
44 parents provided 96 ideas; 79 of which were classified into 7 themes
age at diagnosis ranged from 18 mo. to 180 mo. (15 years)
children with Asperger’s were significantly older than children with Autistic Disorder at diagnosis (p<.01)
Conclusions
Ontario results are similar to those from other areas of the world
early symptoms of ASD tend to be identified by parents
parents were often told not to worry, or their child was referred
long wait lists & lack of coordination impedes early diagnosis
ASD was often diagnosed too late for effective early intervention
most parents were not satisfied with ASD diagnostic system
N=52
N=23
N=6
N=81
Acknowledgements
parents who shared their experiences with us
13 Autism Society of Ontario chapters
The Summit Centre for Preschool Children with Autism
High Functioning Autism/Asperger’s Parent group, Windsor
Ontario Adult Autism Research and Support Network
SSHRC for funding this research