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Beyond an Autism Diagnosis: Children’s Functional Independence and Parents’ Unmet Needs

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Abstract

High demand has resulted in gaps in autism service provision. Our objective was to explore the association between children’s functioning and parents’ perceived unmet needs. We conducted a cross-sectional study of 97 families of school-aged children with an autism spectrum disorder. Log binomial regression was used to examine the relative risk for unmet need. Families of children with high functional independence had lower unmet need than families of children with moderate functional independence (RR = 0.81, 95% CI = 0.67-0.99). Those who experienced greater impact of the child’s disability had greater unmet need (RR = 1.22, 95% CI = 1.03–1.45). The child’s functioning and its impact on the family provide insight into unmet need which may inform service planning.

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Notes

  1. Although not included in the Diagnostic and Statistical Manual of Mental Disorders IV-TR (American Psychiatric Association 2000) definition of autism, “autism spectrum disorder” is a general diagnosis often used by clinicians in Canada. It is synonymous with pervasive developmental disorder-not otherwise specified, and is given to children who do not meet the full criteria for autistic disorder.

  2. One parent’s data was excluded from the analysis because the parent reported 100% unmet need (number of unmet needs was equal to number of important needs). This results in a proportion of 1.00, which is not supported by the regression analysis used. (Values must be between 0.01 and 0.99.)

  3. Evaluation of the Pearson’s Chi square statistic divided by the degrees of freedom revealed that there was overdispersion in the model (i.e., the standard errors of the parameter estimates were underestimated, resulting in high Type I error). Therefore, a multiplicative overdispersion factor (scale = pearson) was added to the model, whereby the covariance matrix was multiplied by a dispersion parameter (in this case, the square root of [Pearson’s Chi square divided by the degrees of freedom]) (SAS Institute Inc. 2008). This factor inflates the standard errors, making tests of statistical significance more conservative.

  4. Unlike other regions, NEDSAC staff do not have direct contact with Manitoba database members and rely on service delivery staff to recruit families. Due to the inability to gain the involvement of this service agency in the study, the entire group of families in the database could not be invited. Instead, an incomplete list was used of families from Manitoba who were also involved in the ASD-CARC Research Registry.

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Acknowledgments

We gratefully acknowledge the parents who participated in this study. This work was supported by a trainee stipend with the Canadian Institutes of Health Research/Autism Speaks STIHR Autism Spectrum Interdisciplinary Research (ASPIRE) Training Program (J. J. A. Holden), an Autism Ontario Stimulus Grant, and the Frederick Banting and Charles Best Canada Graduate Scholarships Master’s Award.

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Authors and Affiliations

  1. Department of Community Health and Epidemiology, Queen’s University, 191 Portsmouth Avenue, Kingston, ON, K7M 8A6, Canada

    Hilary K. Brown, Hélène Ouellette-Kuntz, Duncan Hunter, Virginie Cobigo & Miu Lam

  2. National Epidemiologic Database for the Study of Autism in Canada, Kingston, ON, Canada

    Hilary K. Brown & Hélène Ouellette-Kuntz

  3. Department of Psychiatry, Queen’s University, Kingston, ON, Canada

    Hélène Ouellette-Kuntz

  4. Ongwanada, Kingston, ON, Canada

    Hélène Ouellette-Kuntz

  5. Department of Psychology, Queen’s University, Kingston, ON, Canada

    Elizabeth Kelley

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  1. Hilary K. Brown
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  2. Hélène Ouellette-Kuntz
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  3. Duncan Hunter
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  4. Elizabeth Kelley
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  5. Virginie Cobigo
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  6. Miu Lam
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Correspondence to Hilary K. Brown.

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Brown, H.K., Ouellette-Kuntz, H., Hunter, D. et al. Beyond an Autism Diagnosis: Children’s Functional Independence and Parents’ Unmet Needs. J Autism Dev Disord 41, 1291–1302 (2011). https://doi.org/10.1007/s10803-010-1148-y

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