Journal of Autism and Developmental Disorders

, Volume 44, Issue 8, pp 1859–1866 | Cite as

Impact of Adherence to Best Practice Guidelines on the Diagnostic and Assessment Services for Autism Spectrum Disorder

  • Claire Hathorn
  • Nahed Alateeqi
  • Catriona Graham
  • Anne O’Hare
Original Paper


Despite their range and complexity, adherence to Scottish Intercollegiate Guidelines Network guideline for the diagnosis and assessment of autism spectrum disorders (ASD) was shown to be high within child development and specialist diagnostic clinics serving a geographical cohort of children diagnosed under the age of 7 years. A retrospective analysis of comprehensive clinical notes demonstrated that the recommended discretionary use of structured history instruments was increased after medical training (p = 0.003). 56 % (51/90) of children received the diagnosis of ASD at their initial specialist appointment. 51 % underwent the recommended discretionary structured observational instrument. This further assessment was more likely to be required for older children in the reaudited group (p = 0.001). The implications for service capacity planning when delivering best practice recommendations are discussed.


Guidelines Autism spectrum disorder ASD specific history Observational instruments Paediatric medical training 



We are grateful to colleagues in the diagnostic and assessment clinics in Lothian, South-east Scotland for their co-operation. This study was funded by the Friends Foundation Autism Research and Development Fund at the Royal Hospital for Sick Children in Edinburgh.

Conflict of interest

The authors declare that they have no conflict of interest. Professor Anne O’Hare was Vice Chair of the SIGN 98 Guideline


  1. Academy of Medicine Singapore, Ministry of Health Clinical Practice Guidelines Workgroup on Autism Spectrum Disorders. (2010). Academy of Medicine Singapore-Ministry of Health clinical practice guidelines: Autism Spectrum Disorders in pre-school children. Singapore Medical Journal, 51(3), 255–263.Google Scholar
  2. AGREE Collaboration. (2003). Development and validation of an international appraisal instrument for assessing the quality of clinical practice guidelines: the AGREE project. Quality and Safety in Health Care, 2, 18–23.Google Scholar
  3. American Academy of Paediatrics. (2011). Policy statement—AAP publications reaffirmed and retired. Pediatrics, 127(3), E857.CrossRefGoogle Scholar
  4. Baird, G., Charman, T., Pickles, A., Chandler, S., Lucas, T., Meldrum, D., et al. (2008). Regression, developmental trajectory and associated problems in disorders in the autism spectrum: the SNAP study. Journal of Autism and Developmental Disorders, 38, 1827–1836.PubMedCrossRefGoogle Scholar
  5. Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., et al. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: The Special Needs and Autism Project (SNAP). Lancet, 368(9531), 210–215.PubMedCrossRefGoogle Scholar
  6. Bertrand, J., Mars, A., Boyle, C., Bove, F., Yeargin-Allsopp, M., & Decoufle, P. (2001). Prevalence of autism in a United States population: The Brick Township, New Jersey, investigation. Pediatrics, 108(5), 1155–11561.PubMedCrossRefGoogle Scholar
  7. Brock, M., & Hatton, D. (2010). Distinguishing features of autism in boys with fragile X syndrome. Journal of Intellectual Disability Research, 54(10), 894–905.PubMedCrossRefGoogle Scholar
  8. Brugha, T. S., McManus, S., Bankart, J., Scott, F., Purdon, S., Smith, J., et al. (2011). Epidemiology of Autism Spectrum Disorders in adults in the community in England. Archives of General Psychiatry, 68(5), 459–466.PubMedCrossRefGoogle Scholar
  9. Charman, T., & Gotham, K. (2013). Measurement issues: Screening and diagnostic instruments for autism spectrum disorders—Lessons from research and practice. Child and Adolescent Mental Health, 18(1), 52–64.PubMedCentralPubMedCrossRefGoogle Scholar
  10. Constantino, J. N. (2002). Social Responsiveness Scale (SRS). Los Angeles: Western Psychological Services.Google Scholar
  11. Coo, H., Ouellette-Kuntz, H., Lam, M., Yu, C. T., Dewey, D., Bernier, F. P., et al. (2012). Correlates of age at diagnosis of autism spectrum disorders in 6 Canadian regions. Chronic Diseases and Injuries in Canada, 32(2), 90–100.PubMedGoogle Scholar
  12. Davidoff, M. J., Dias, T., Damus, K., Russell, R., Bettegowda, V. R., Dolan, S., et al. (2006). Changes in the gestational age distribution among U.S. singleton births: Impact on rates of late preterm birth, 1992 to 2002. Seminars in Perinatology, 30(1), 8–15.PubMedCrossRefGoogle Scholar
  13. de Bruin, E. I., Ferdinand, R. F., Meester, S., de Nijs, P. F. A., & Verheij, F. (2007). High rates of psychiatric comorbidity in PDD-NOS. Journal of Autism and Developmental Disorders, 37, 877–886.PubMedCrossRefGoogle Scholar
  14. Elsabbagh, M., Divan, G., Koh, Y. J., Kim, Y. S., Kauchali, S., Marcin, C., et al. (2012). Global prevalence of autism and other pervasive developmental disorders. [Review]. Autism Research: Official Journal of the International Society for Autism Research, 5(3), 160–179.CrossRefGoogle Scholar
  15. Gardener, H., Spiegelman, D., & Buka, S. L. (2011). Perinatal and neonatal risk factors for autism: A comprehensive meta-analysis. Pediatrics, 128(2), 344–355.PubMedCentralPubMedCrossRefGoogle Scholar
  16. Gilliam, J. E. (1995). Gilliam Autism Rating Scale (GARS). Austin, TX: Pro-Ed.Google Scholar
  17. Goldman, S., Wang, C., Salgado, M. W., Greene, P. E., Kim, M., & Rapin, I. (2008). Motor stereotypies in children with autism and other developmental disorders. Developmental Medicine Child Neurology, 51, 30–38.CrossRefGoogle Scholar
  18. Harrison, M. J., O’Hare, A. E., Campbell, H., Adamson, A., & McNeilage, J. (2006). Prevalence of autistic spectrum disorders in Lothian, Scotland: An estimate using the “capture-recapture” technique. Archives of Disease in Childhood, 91, 16–19.PubMedCentralPubMedCrossRefGoogle Scholar
  19. Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and Asperger syndrome: findings from a survey of 770 families. Developmental Medicine and Child Neurology, 41, 834–839.PubMedCrossRefGoogle Scholar
  20. Johnson, S., Hollis, C., Hennessy, E., Kochhar, P., Wolke, D., & Marlow, N. (2011). Screening for autism in preterm children: Diagnostic utility of the Social Communication Questionnaire. Archives of Disease in Childhood, 96, 73–77.PubMedCrossRefGoogle Scholar
  21. Keaney, M., & Lorimer, A. (1999). Auditing the implementation of SIGN clinical guidelines. International Journal of Health Care Quality Assurance, 12(7), 314–317.CrossRefGoogle Scholar
  22. Liddle, J., Williamson, M., & Irwig, L. (December 1996). Method for evaluating research and guideline evidence. Sydney: NSW Health Department.Google Scholar
  23. Lord, C., Risi, S., Lambrecht, L., Cook, E. H, Jr, 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(3), 205–223.PubMedCrossRefGoogle Scholar
  24. Lord, C., Rutter, M., & Le Couter, A. (2002). 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.CrossRefGoogle Scholar
  25. Mandell, D. S., Novak, M. M., & Zubritsky, C. D. (2005). Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics, 16, 1480–1486.CrossRefGoogle Scholar
  26. Mazefsky, C. A., & Oswald, D. P. (2006). The discriminative ability and diagnostic utility of the ADOS-G, ADI-R, and GARS for children in a clinical setting. Autism, 10(6), 533–549.PubMedCrossRefGoogle Scholar
  27. McConachie, H., Le Couteur, A., & Honey, E. (2005). Can a diagnosis of Asperger Syndrome be made in very young children with suspected Autism Spectrum Disorder? Journal of Autism and Developmental Disorders, 35(2), 167–176.PubMedCrossRefGoogle Scholar
  28. Millard, A. (1997). Evidence-based clinical guidelines—implementation plans in Scotland. International Journal of Health Care Quality Assurance, 10(6/7), 236–240.CrossRefGoogle Scholar
  29. Ministries of Health and Education. (2008). New Zealand Autism Spectrum Disorder Guideline. Wellington: Ministry of Health.Google Scholar
  30. National Autism Plan for Children. (NAP-C). (2003). Plan for identification, assessment, diagnosis and access to early interventions for preschool and primary school aged children with autism spectrum disorders. London: National Autistic Society.Google Scholar
  31. National Institute for Health and Clinical Excellence (NICE). (2011). Autism: Recognition, referral and diagnosis of children and young people on the autism spectrum (CG128). London: National Institute for Health and Clinical Excellence (NICE).Google Scholar
  32. National Institute for Health and Clinical Excellence (NICE). (2012). Autism recognition, referral, diagnosis and management of adults on the autism spectrum (CG23). London: National Institute for Health and Clinical Excellence (NICE).Google Scholar
  33. New York State Department of Health Early Intervention Program. (1999). Clinical Practice Guideline. Quick reference guide for parents and professionals autism/pervasive developmental disorders assessment and intervention for young children (age 0–3 years).Google Scholar
  34. Numis, A. L., Major, P., Montenegro, M. A., Muzykewicz, D. A., Pulsifer, M. B., & Thiele, E. A. (2011). Identification of risk factors for autism spectrum disorders in tuberous sclerosis complex. Neurology, 76(11), 981–987.PubMedCentralPubMedCrossRefGoogle Scholar
  35. O’Hare, A. E., Quew, R., & Aitken, K. (1998). The identification of autism in children referred to a tertiary speech and language clinic and the implications for service delivery. Autism, 2(2), 171–180.CrossRefGoogle Scholar
  36. Palmer, E., Ketteridge, C., Parr, J. R., Baird, G., & Le Couteur, A. (2011). Autism spectrum disorder diagnostic assessments: Improvements since publication of the National Autism Plan for Children. Archives of Disease in Childhood, 96, 473–475.PubMedCrossRefGoogle Scholar
  37. Pandolfi, V., Magyar, C. I., & Dill, C. A. (2010). Constructs Assessed by the GARS-2: Factor Analysis of Data from the Standardization Sample. Journal of Autism and Developmental Disorders, 40, 1118–1130.PubMedCrossRefGoogle Scholar
  38. Parner, E. T., Thorsen, P., Dixon, G., de Klerk, N., Leonard, H., Nassar, N., et al. (2011). A comparison of autism prevalence trends in Denmark and Western Australia. Journal of Autism and Developmental Disorders, 41(12), 1601–1608.PubMedCrossRefGoogle Scholar
  39. Posserud, N. B., Lundervoid, A. J., & Gilberg, C. (2006). Autistic features in the total population of 7–9 year old children assessed by the ASSQ (Autism Spectrum Screening Questionnaire). Journal of Child Psychology and Psychiatry and Allied Disciplines, 47(2), 167–175.CrossRefGoogle Scholar
  40. Public Health Institute of Scotland’s Autistic Spectrum Disorder Needs Assessment Report: Scottish Executive Report on Implementation and Next Steps (2001) Glasgow: PHIS/NHS Scotland. Accessed Jan 2013.
  41. Quine, L., & Rutter, D. R. (1994). First diagnosis of severe mental and physical disability: A study of doctor-parent communication. Journal of Child Psychology and Psychiatry, 35(7), 1273–1287.PubMedCrossRefGoogle Scholar
  42. Riou, E., Ghosh, S., Francoeur, E., & Shevell, M. (2009). Global developmental delay and its relationship to cognitive skills. Developmental Medicine and Child Neurology, 51(8), 600–607.PubMedCrossRefGoogle Scholar
  43. Sadiq, F. A., Slator, L., Skuse, D., Law, J., Gillberg, C., & Minnis, H. (2012). Social use of language in children with reactive attachment disorder and autism spectrum disorders. European Child and Adolescent Psychiatry, 21(5), 267–276.PubMedCrossRefGoogle Scholar
  44. Shea, B. J., Grimshaw, J. M., Wells, G. A., Boers, M., Andersson, N., Hamel, C., et al. (2007). Development of AMSTAR: A measurement tool to assess the methodological quality of systematic reviews. BMC Medical Research Methodology, 2007(7), 10.CrossRefGoogle Scholar
  45. SIGN 98. (2007).Assessment, diagnosis and clinical interventions for children and young people with autism spectrum disorders. A national clinical guideline. Accessed June 2012.
  46. SIGN 50. (2008). A guideline developer’s handbook. Accessed June 2012.
  47. Siklos, S., & Kerns, K. A. (2006). Assessing the diagnostic experiences of a small sample of parents of children with autism spectrum disorders. Research in Developmental Disabilities, 28(1), 9–22.PubMedCrossRefGoogle Scholar
  48. Simonoff, E., Jones, C. R. G., Baird, G., Pickles, A., Happe, F., & Charman, T. (2013). The persistence and stability of psychiatric problems in adolescents with autism spectrum disorders. Journal of Child Psychology and Psychiatry, 54(2), 186–194.PubMedCrossRefGoogle Scholar
  49. Whiting, P. F., Rutjes, A. W. S., Westwood, M. E., the QUADAS-2 group, et al. (2011). QUADAS-2: A revised tool for the quality assessment of diagnostic accuracy studies. Annals of Internal Medicine, 155, 529–536.PubMedCrossRefGoogle Scholar
  50. Wing, L., Leekam, S. R., Libby, S. J., Gould, J., & Larcombe, M. (2002). The Diagnostic Interview for Social and Communication Disorders: Background, inter-rater reliability and clinical use. Journal of Child Psychology and Psychiatry, 43(3), 307–325.PubMedCrossRefGoogle Scholar
  51. World Health Organisation. (1993). The International Classification of Diseases—Classification of mental and behavioural disorders, diagnostic criteria for research (ICD-10) (10th ed.). Geneva: WHO.Google Scholar

Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Claire Hathorn
    • 1
  • Nahed Alateeqi
    • 3
    • 4
  • Catriona Graham
    • 2
  • Anne O’Hare
    • 3
  1. 1.Royal Hospital for Sick ChildrenEdinburghUK
  2. 2.Wellcome Trust Clinical Research FacilityEdinburghUK
  3. 3.School of Clinical Sciences, Child Life and HealthUniversity of EdinburghEdinburghUK
  4. 4.Developmental Pediatric UnitSabah HospitalKuwait CityKuwait

Personalised recommendations