Factors influencing waiting times for diagnosis of Autism Spectrum Disorder in children and adults
Abstract
Aims To identify the main factors predicting delays in diagnosis for Autism Spectrum Disorder (ASD) at three stages in the diagnostic process: wait for first appointment; assessment duration, and total wait for diagnosis. Method Data were gathered from 150 case notes (80 child and 70 adult cases) from 16 diagnosing services across Scotland. Results Having more information pre-assessment was associated with a reduced duration of the diagnostic process for children. This relationship was partially mediated by a reduction in the number of contacts required for diagnosis. In adults, having more factors associated with ASD (increased risk) reduced the wait time from referral to first appointment, but increased the overall duration of the diagnostic process. The latter relationship was partially mediated by an increase in the number of contacts required for diagnosis. Conclusion Within children's services, increasing the amount of relevant information available pre-assessment is likely to reduce total duration of the assessment process by reducing number of contacts required. Having a high risk of ASD as an adult appears to result in being seen more quickly following referral, but also to increase the number of contacts needed and assessment duration. As a result, it increases and total duration overall.
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Adults experienced a mean duration of 159.2 days between referral and receiving a diagnosis.
“Adults experienced a mean duration of 159.2 days between referral and receiving a diagnosis (McKenzie et al., 2015).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as McKenzie et al., 2015
Diagnosis duration was unrelated to client gender or service adherence to NICE guidelines, but client characteristics including intellectual disability and additional support needs predicted longer duration.
“Diagnosis duration was unrelated to client gender (Rutherford, McKenzie, Johnson, et al., 2016) or service adherence to NICE guidelines (McKenzie et al., 2016), but client characteristics including intellectual disability and additional support needs predicted longer duration (McKenzie et al., 2015).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as McKenzie et al., 2015
In adults recently diagnosed with autism in Scotland, total number of contacts predicted shorter wait to first appointment but longer assessment and total duration.
“In adults, risk score (neurological disorders, ID, language delay/regression, preterm birth, additional support needs, family history, supported care) and total number of contacts predicted shorter wait to first appointment but longer assessment and total duration.”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as McKenzie et al. (2015)
In adults recently diagnosed with autism in Scotland, risk score predicted shorter wait to first appointment but longer assessment and total duration.
“In adults, risk score (neurological disorders, ID, language delay/regression, preterm birth, additional support needs, family history, supported care) and total number of contacts predicted shorter wait to first appointment but longer assessment and total duration.”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as McKenzie et al. (2015)
Cites
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Racial/Ethnic Disparities in the Identification of Children With Autism Spectrum Disorders
Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., Giarelli, E., Morrier, M. J., Nicholas, J. S., Pinto-Martin, J. A., et al. (2009) · American Journal of Public Health · doi:10.2105/ajph.2007.131243 · Cited by 946 · see citing works
Epidemiology of Autism Spectrum Disorders in Adults in the Community in England
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Disparities in Diagnoses Received Prior to a Diagnosis of Autism Spectrum Disorder
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Sex differences in the evaluation and diagnosis of autism spectrum disorders among children
Giarelli, E., Wiggins, L. D., Rice, C. E., Levy, S. E., Kirby, R. S., Pinto-Martin, J., & Mandell, D. (2010) · Disability and Health Journal · doi:10.1016/j.dhjo.2009.07.001 · Cited by 398 · see citing works
Autism spectrum disorders in the DSM-V: better or worse than the DSM-IV?
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Diagnosis of autism in adulthood: A scoping review
Huang, Y., Arnold, S. R., Foley, K.-R., & Trollor, J. N. (2020) · Autism · doi:10.1177/1362361320903128 · Cited by 289 · see citing works
“…duration was unrelated to client gender (Rutherford, McKenzie, Johnson, et al., 2016) or service adherence to NICE guidelines (McKenzie et al., 2016), but client characteristics including intellectual disability and additional support needs predicted longer duration (McKenzie et al., 2015).”
BackgroundInfluentialPrimary care autism screening and later autism diagnosis
Carbone, P. S., Campbell, K., Wilkes, J., Stoddard, G. J., Huynh, K., Young, P. C., & Gabrielsen, T. P. (2020) · Pediatrics · doi:10.1542/peds.2019-2314 · Cited by 144 · see citing works
Practice patterns and determinants of wait time for autism spectrum disorder diagnosis in Canada
Penner, M., Anagnostou, E., & Ungar, W. J. (2018) · Molecular Autism · doi:10.1186/s13229-018-0201-0 · Cited by 79 · see citing works
Rutherford, M., Forsyth, K., McKenzie, K., McClure, I., Murray, A., McCartney, D., Irvine, L., & O’Hare, A. (2018) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-018-3501-5 · Cited by 15 · see citing works
Self-citation
- Authors
- McKenzie, K., Forsyth, K., O’Hare, A., McClure, I., Rutherford, M., Murray, A., & Irvine, L.
- Affiliations
- Northumbria University (GB)
- Queen Margaret University (GB)
- University of Edinburgh (GB)
- NHS Lothian (GB)
- Corresponding author
- McKenzie, Karen
- Venue
- Research in Developmental Disabilities
- Publisher
- Elsevier BV
- Published
- 2015-10
- Volume
- 45-46
- Pages
- 300-306
- ISSN
- 0891-4222 (ISSN-L)
- OpenAlex
- W2135153693
- Cited by
- 51
- References
- 6
- Citations by year
- 2026: 5 · 2025: 7 · 2024: 4 · 2023: 4 · 2022: 7 · 2021: 9 · 2020: 5 · 2019: 2 · 2018: 3 · 2017: 2 · 2016: 3
- FWCI
- 1.60
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Research in Developmental Disabilities (publishedVersion)
- PubMed (publishedVersion)
- Queen Margaret University Publications Repository (Queen Margaret University) (acceptedVersion)
- Queen Margaret University Publications Repository (Queen Margaret University) (submittedVersion)
- Funders
- Scottish Government
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- autism spectrum disorder, delayed diagnosis, waiting time, risk factors, children, adults, diagnostic services
- MeSH terms
- Autism Spectrum Disorder, Adolescent, Adult, Appointments and Schedules, Child, Child, Preschool, Female, Humans, Infant, Male, Middle Aged, Retrospective Studies, Scotland, Time Factors, Young Adult, Delayed Diagnosis
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