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By: Hilary Brown. Who falls into the gap?. Perceptions of Unmet Need in School-Aged Children with Autism Spectrum Disorders. TITLE. PURPOSE. BACKGROUND. METHODOLOGY. PARTICIPANT RECRUITMENT. IMPLICATION. Purpose.

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who falls into the gap

By: Hilary Brown

Who falls into the gap?

Perceptions of Unmet Need in School-Aged Children with Autism Spectrum Disorders

TITLE

PURPOSE

BACKGROUND

METHODOLOGY

PARTICIPANT RECRUITMENT

IMPLICATION

purpose
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

BACKGROUND

METHODOLOGY

PARTICIPANT RECRUITMENT

IMPLICATION

background
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

TITLE

PURPOSE

BACKGROUND

METHODOLOGY

PARTICIPANT RECRUITMENT

IMPLICATION

methodology
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

TITLE

PURPOSE

BACKGROUND

METHODOLOGY

PARTICIPANT RECRUITMENT

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

TITLE

PURPOSE

BACKGROUND

METHODOLOGY

PARTICIPANT RECRUITMENT

IMPLICATION

implications
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

TITLE

PURPOSE

BACKGROUND

METHODOLOGY

PARTICIPANT RECRUITMENT

IMPLICATION

references
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), 219-239.

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), 659-685.

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), 1662-1671.

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, 818-829.

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, 1902-1912.

Hilary Brown

Hilary is in her first year of an M.Sc. in Community Health & Epidemiology at Queen’s University

TITLE

PURPOSE

BACKGROUND

METHODOLOGY

PARTICIPANT RECRUITMENT

IMPLICATION