Alison A. Spadafora, Marcia N. Gragg, and Sylvia L. Voelker www.uwindsor.ca/autism mgragg@uwindsor.ca 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 (1 - 84 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 (28 - 58 years) 91% Caucasian 81% born in Canada 86% married 86% had some college/university or more high SES (Hollingshead score = 41.5+10.91) 81 children 70 males, 11 females mean birth year was 1995 (1984 - 2001) 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