The cost of autism spectrum disorders

PLoS One. 2014 Sep 5;9(9):e106552. doi: 10.1371/journal.pone.0106552. eCollection 2014.

Abstract

Objective: A diagnosis of an autism spectrum disorders is usually associated with substantial lifetime costs to an individual, their family and the community. However, there remains an elusive factor in any cost-benefit analysis of ASD diagnosis, namely the cost of not obtaining a diagnosis. Given the infeasibility of estimating the costs of a population that, by its nature, is inaccessible, the current study compares expenses between families whose children received a formal ASD diagnosis immediately upon suspecting developmental atypicality and seeking advice, with families that experienced a delay between first suspicion and formal diagnosis.

Design: A register based questionnaire study covering all families with a child with ASD in Western Australia.

Participants: Families with one or more children diagnosed with an ASD, totalling 521 children diagnosed with an ASD; 317 records were able to be included in the final analysis.

Results: The median family cost of ASD was estimated to be AUD $34,900 per annum with almost 90% of the sum ($29,200) due to loss of income from employment. For each additional symptom reported, approximately $1,400 cost for the family per annum was added. While there was little direct influence on costs associated with a delay in the diagnosis, the delay was associated with a modest increase in the number of ASD symptoms, indirectly impacting the cost of ASD.

Conclusions: A delay in diagnosis was associated with an indirect increased financial burden to families. Early and appropriate access to early intervention is known to improve a child's long-term outcomes and reduce lifetime costs to the individual, family and society. Consequently, a per symptom dollar value may assist in allocation of individualised funding amounts for interventions rather than a nominal amount allocated to all children below a certain age, regardless of symptom presentation, as is the case in Western Australia.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Autism Spectrum Disorder / diagnosis
  • Autism Spectrum Disorder / epidemiology*
  • Child
  • Cost-Benefit Analysis
  • Female
  • Health Care Costs*
  • Humans
  • Male
  • Registries
  • Surveys and Questionnaires
  • Western Australia / epidemiology

Grants and funding

This study was funded by the Department of Social Services (DSS), formerly the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA), with in-kind support of the Autism CRC, established and supported under the Australian Government's Cooperative Research Centres Program. The research was also conducted in collaboration with Disabilities Services Commission Western Australia (DSC). DSS had no active role in the design, implementation, data collection, analysis or interpretation of the study. DSC collaborated with the authors and assisted in data collection by in-kind contribution of its employee's time in some aspects of the study. Writing of the report and the decision to submit this manuscript were solely the role and responsibility of the authors. However, approval to submit this study for publication was sought from CRC Living with Autism Spectrum Disorders, DSS and DSC. All researchers are independent from both DSS and DSC and take full responsibility for the integrity of the data and the accuracy of the analyses. (DSS grant number - RES-HEA-CRD-TB-50940 http://www.dss.gov.au/)