Who falls into the gap? By: Hilary Brown TITLE PURPOSEBACKGROUNDMETHODOLOGY IMPLICATION PARTICIPANT RECRUITMENT

Purpose  Investigate areas of unmet need identified by parents of children with an autism spectrum disorder (ASD) aged 6 through 14  Determine the profile of children with high unmet need in terms of:  Demographic characteristics  Symptom severity  Support needs as described by formal measures Hilary Brown Hilary is in her first year of an M.Sc. in Community Health & Epidemiology at Queen’s University TITLE PURPOSE BACKGROUNDMETHODOLOGY IMPLICATION PARTICIPANT RECRUITMENT

Background  Reported service utilization patterns:  Average of 7 ASD-related services at one time  Speech/language therapy at school most frequently used  Problems with access to services and information  Demographic characteristics linked to limited access  There is a need to explore the clinical profile of children who fall into the service gap  Severity of autistic symptomatology  Maladaptive behaviours  Adaptive behaviours Szatmari et al., 1995; Thomas et al., 2007a; Thomas et al., 2007b Hilary Brown Hilary is in her first year of an M.Sc. in Community Health & Epidemiology at Queen’s University TITLEPURPOSE BACKGROUND METHODOLOGY IMPLICATION PARTICIPANT RECRUITMENT

Methodology  Survey instruments:  Perceived Needs Scale (Quine & Pahl, 1989)  Autism Diagnostic Inventory-Revised (Lord et al., 1994)  Scales of Independent Behaviour-Revised (Bruininks et al., 1996)  Ways of Coping Scale (Folkman & Lazarus, 1980)  Family Resources Scale (Dunst & Leet, 1985) Hilary is in her first year of an M.Sc. in Community Health & Epidemiology at Queen’s University TITLEPURPOSEBACKGROUND METHODOLOGY IMPLICATION PARTICIPANT RECRUITMENT

Participant Recruitment  Participants:  ~100 needed  Ages 6 through 14 years  Diagnosis of autistic disorder, Asperger’s disorder, PDD-NOS, or autism spectrum disorder  Recruitment:  National Epidemiologic Database for the Study of Autism in Canada (NEDSAC)  300 potential participants in Manitoba, Southeastern Ontario, Prince Edward Island, and Newfoundland & Labrador Hilary Brown Hilary is in her first year of an M.Sc. in Community Health & Epidemiology at Queen’s University TITLEPURPOSEBACKGROUNDMETHODOLOGY IMPLICATION PARTICIPANT RECRUITMENT

Implications  Basic descriptive utilization information for policymakers and service providers  Insight into planning appropriate service coverage and eligibility criteria Hilary Brown Hilary is in her first year of an M.Sc. in Community Health & Epidemiology at Queen’s University TITLEPURPOSEBACKGROUNDMETHODOLOGY IMPLICATION PARTICIPANT RECRUITMENT

References Bruininks, R. H., Woodcock, R. W., Weatherman, R. F., & Hill, B. K. (1996). Scales of Independent Behaviour-Revised. Chicago: Riverside. Dunst, C. J., & Leet, H. E. (1985). Family resource scale. Morgantown, NC: Western Carolina Center. Folkman, S., & Lazarus, R. S. (1980). An analysis of coping in a middle-aged community sample. Journal of Health and Social Behaviour, 21(3), Lord, C. Rutter, M, & Couteur, A. (1994). Autism Diagnostic Interview Revised : A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24(5), Quine, L., & Pahl, J. (1989). Stress and coping in families caring for a child with a severe mental handicap: A longitudinal study. Institute of Social and Applied Psychology and Centre for Health Services Studies, University of Kent, Canterbury. Szatmari, P., Archer, L., Fisman, S., Streiner, D. L., & Wilson, F. (1995) Asperger’s Syndrome and Autism: Differences in behaviour, cognition, and adaptive functioning. Journal of the American Academy of Child and Adolescent Psychiatry, 34(12), Thomas, K. C., Morrissey, J. P., & McLaurin, C. (2007a). Use of autism-related services by families and children. Journal of Autism and Developmental Disorders, 37, Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007b). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37, Hilary Brown Hilary is in her first year of an M.Sc. in Community Health & Epidemiology at Queen’s University TITLEPURPOSEBACKGROUNDMETHODOLOGY IMPLICATION PARTICIPANT RECRUITMENT