Objectives: The objectives of this research were: (1) to describe areas of unmet need reported by parents of school-aged children with ASD and (2) to examine these unmet needs in relation to the level of functional independence of the child.
Methods: A cross-sectional survey was conducted, which included parents of children who: (1) had an ASD, (2) were between the ages of 6 and 13 years, and (3) were residing in one of the study regions. Parents responded to a written questionnaire (Family Needs Questionnaire; demographic questions) and a telephone interview (Scales of Independent Behaviour-Revised [Short Form]; service use questions). Data collection is in progress; at this time, data are available for 42 of 100 expected participants. The children were diagnosed as having autistic disorder (50.0%), pervasive developmental disorder-not otherwise specified (9.5%), Asperger’s disorder (14.3%), and autism spectrum disorder (26.2%). The average age was 9.5 years (SD = 2.3), and 81.0% were male.
Results: Functional independence was measured by the child’s adaptive and problem behaviours and was categorized as low (26.2%), moderate (54.8%), or high (19.0%). Needs were ranked first according to importance and then according to whether or not they had been met. In order to compare the types of needs experienced by children in each functional independence category, the top five important needs were selected and the proportions of these which were unmet were reported for each group. Preliminary results indicate that for the low functional independence group, the most commonly reported unmet need was the need for respite for the parent (100.0% unmet). For moderate functional independence, the most commonly endorsed unmet need was the need for financial support to fund therapies (73.7% unmet). For high functional independence, the most commonly reported unmet need was the need for information about available programs (75.0% unmet).
Conclusions: As expected, the types of needs ranked as important and unmet differed according to the functional independence category. Examining unmet needs in this way provides insight into characteristics which may predict families who are at greater risk for having needs which have not been recognized and met by the service system. Information about the unmet needs of children with ASD and their families will help policymakers and service-providers to rethink eligibility criteria and the process of accessing care and will enable them to develop resources and services that are responsive to the needs of their client group.