Service and Wider Societal Costs of Very Young Children with Autism in the UK

  • Barbara Barrett
  • Sarah Byford
  • Jessica Sharac
  • Kristelle Hudry
  • Kathy Leadbitter
  • Kathryn Temple
  • Catherine Aldred
  • Vicky Slonims
  • Jonathan Green
  • PACT Consortium
Original Paper

Abstract

Autism spectrum disorders (ASD) are associated with a substantial economic burden, but there is little evidence of the costs in the early years; the period in which children are increasingly likely to be diagnosed. We describe the services used by 152 children aged 24–60 months with autism, report family out-of-pocket expenses and productivity losses, and explore the relationship between family characteristics and costs. Children received a wide range of hospital and community services including relatively high levels of contact with speech and language therapists and paediatricians. Total service costs varied greatly (mean £430 per month; range £53 to £1,116), with some families receiving little statutory support. Higher costs were associated with increasing age and symptom severity.

Keywords

Cost Very young children Autism Service use 

References

  1. Barber, J. A., & Thompson, S. G. (1998). Analysis and interpretation of cost data in randomised controlled trials: Review of published studies. British Medical Journal, 317, 1195–1200.PubMedCrossRefGoogle Scholar
  2. Blough, D. K., Madden, C. W., & Hornbrook, M. C. (1999). Modeling risk using generalized linear models. Journal of Health Economics, 18, 153–171.PubMedCrossRefGoogle Scholar
  3. British Medical Association and Royal Pharmaceutical Society of Great Britain. (2007). British National Formulary. London: BMJ Books/Pharmaceutical Press.Google Scholar
  4. Byford, S., Barrett, B., Roberts, C., Wilkinson, P., Dubicka, B., Kelvin, R. G., et al. (2007). Cost-effectiveness of selective serotonin reuptake inhibitors and routine specialist care with and without cognitive behavioural therapy in adolescents with major depression. British Journal of Psychiatry, 191, 521–527.PubMedCrossRefGoogle Scholar
  5. Byford, S., Fiander, M., Torgerson, D. J., Barber, J. A., Thompson, S. G., Burns, T., et al. (2000). Cost-effectiveness of intensive v. standard case management for severe psychotic illness. UK700 case management trial. British Journal of Psychiatry, 176, 537–543.CrossRefGoogle Scholar
  6. Charman, T., & Baird, G. (2002). Assessment and diagnosis of autism spectrum disorders in pre-school years. Journal of Child Psychology and Psychiatry, 43, 289–305.PubMedCrossRefGoogle Scholar
  7. Curtis, L. (2007). Unit costs of health and social care. Canterbury: Personal Social Services Research Unit.Google Scholar
  8. Daycare Trust. (2008). Childcare costs survey. London: Daycare Trust.Google Scholar
  9. Department of Health. (2004). National service framework for children, young people and maternity services autism exemplar. London: Department of Health.Google Scholar
  10. Department of Health. (2008). NHS reference costs. London: Department of Health.Google Scholar
  11. Flanders, S. C., Engelhart, L., Whitworth, J., Hussein, M. A., Vanderpoel, D. R., & Sandman, T. (2006). The economic burden of pervasive developmental disorders in a privately insured population. Managed Care Interface, 19, 39–45.PubMedGoogle Scholar
  12. Green, J., Charman, T., McConachie, H., Aldred, C., Slonims, V., Howlin, P., et al. (2010). Parent-mediated communication-focused treatment in children with autism (PACT): A randomised controlled trial. Lancet, 375, 2152–2160.PubMedCrossRefGoogle Scholar
  13. Knapp, M., Romeo, R., & Beecham, J. (2009). Economic cost of autism in the UK. Autism, 13, 317–336.PubMedCrossRefGoogle Scholar
  14. Koopmanschap, M. A., & Rutten, F. (1996). A practical guide for calculating indirect costs of disease. Pharmacoeconomics, 10, 460–466.PubMedCrossRefGoogle Scholar
  15. Le Couteur, A. (2003). National autism plan for children (NAP-C). London: The National Autistic Society.Google Scholar
  16. Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M., et al. (2008). Disparities in diagnosis and access to health services for children with autism: data from the National Survey of Children’s Health. Journal of Developmental and Behavioral Pediatrics, 29, 152–160.PubMedCrossRefGoogle Scholar
  17. Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Leventhal, B. L., DiLavore, P. C., et al. (2000). The autism diagnostic observation schedule—Generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30, 205–223.PubMedCrossRefGoogle Scholar
  18. Lord, C., Rutter, M., & Le 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, 659–685.PubMedCrossRefGoogle Scholar
  19. Mandell, D. S., Cao, J., Ittenbach, R., & Pinto-Martin, J. (2006). Medicaid expenditures for children with autism spectrum disorders: 1994 to 1999. Journal of Autism and Developmental Disorders, 36, 475–485.PubMedCrossRefGoogle Scholar
  20. Mullen, E. M. (1995). Mullen scales of early learning. Circle Pines, MN: American Guidance Service.Google Scholar
  21. Office for National Statistics. (2009). Key population and vital statistics 2007. Newport: Office for National Statistics.Google Scholar
  22. Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37, 1902–1912.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2011

Authors and Affiliations

  • Barbara Barrett
    • 1
  • Sarah Byford
    • 1
  • Jessica Sharac
    • 1
  • Kristelle Hudry
    • 2
    • 7
  • Kathy Leadbitter
    • 3
  • Kathryn Temple
    • 4
  • Catherine Aldred
    • 5
  • Vicky Slonims
    • 6
  • Jonathan Green
    • 3
  • PACT Consortium
  1. 1.King’s College LondonInstitute of PsychiatryLondonUK
  2. 2.Institute of Child HealthUniversity College LondonLondonUK
  3. 3.University of ManchesterManchesterUK
  4. 4.Newcastle UniversityNewcastleUK
  5. 5.Stockport Primary Care TrustStockportUK
  6. 6.Guy’s and St. Thomas NHS Foundation TrustLondonUK
  7. 7.Centre for Research in Autism and Education, Institute of EducationLondonUK

Personalised recommendations