How can we improve the timeliness and quality of diagnostic assessment for children with possible autism? Qualitative findings and recommendations from a Realist Evaluation of Autism Service delivery in the United Kingdom

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Male, I., Farr, W., McGrevey, S., Abrahamson, V., Wigham, S., Reddy, V., Allard, A., Grahame, V., Maxwell, J., Saunders, G., Walker, A., King, N., Islam, S., Akhtar, Z., Parr, J. R., & Wilson, P. (2026). How can we improve the timeliness and quality of diagnostic assessment for children with possible autism? Qualitative findings and recommendations from a Realist Evaluation of Autism Service delivery in the United Kingdom. Autism, 30(6), 1562-1575. https://doi.org/10.1177/13623613261430914

Publication date: 10 May 2026 Added to AutiHub: 30 Aug 2026 Type: Article Article language: English
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Authors

Publication authors
16
Publication authors identified as autistic
1 / 16 (6.2%)
  1. Ian Male
  2. William Farr
  3. Sophie McGrevey
  4. Vanessa Abrahamson
  5. Sarah Wigham
  6. Venkat Reddy
  1. Amanda Allard
  2. Victoria Grahame
  3. Jessica Maxwell
  4. Grainne Saunders
  5. Anna Walker
  6. Nic King *
  1. Seema Islam
  2. Zamir Akhtar
  3. Jeremy R Parr
  4. Patricia Wilson

Abstract

Families face long waits for their child to undergo a diagnostic assessment for possible autism. This study explored the experiences of parents and children/young people (CYP) accessing and professionals providing autism diagnostic assessments in the United Kingdom. This realist evaluation was conducted in three phases: (1) interviews and focus groups with parents, CYP and professionals from six U.K. National Health Service (NHS) childhood autism assessment and diagnosis services; (2) resulting qualitative data were analysed, and programme theories (PTs) explaining how, why and in what contexts childhood autism assessment and diagnosis pathways work well were tested and refined; and (3) recommendations for change were developed by the research team and presented to delegates at six dissemination events including 250 clinicians, managers, parents/carers, commissioners and academics involved in autism assessment and diagnosis. Delegates were invited to select and rank the most important recommendations. There were 121 participants in Phase 1 (18 CYP, 34 parents, 69 professionals). In Phase 2, both families and clinicians confirmed challenges in the assessment and diagnostic process, including increased demand for assessments and insufficient numbers of specialist multidisciplinary team (MDT) practitioners to provide adequately skilled workforces. The need to support families across the whole assessment and diagnostic process was seen as key to providing a quality service but was often not possible. Steps taken to improve the process were identified, and seven PTs covered: improving recognition of children needing referral, referral processes, service organisation, professional skill mix, assessment, feedback/report writing and training/service evaluation. In Phase 3, during consultation, 12 recommendations were selected as most important for change. Several strategies for improving services were identified that may reduce waiting times and increase acceptability and quality of childhood autism assessment and diagnosis services. Lay Abstract Waiting lists for childhood autism assessments are lengthy, meaning families wait a long time for their child to undergo a diagnostic assessment for possible autism. In this study, we explored the experiences of children, young people and parents who have gone through the assessment and diagnosis process in the United Kingdom. We also explored the views of professionals who deliver childhood autism diagnostic assessments. We conducted interviews and focus groups with children, young people, parents and professionals. We recruited participants from six U.K. National Health Service (NHS) assessment and diagnosis services. We wanted to find out how childhood autism assessment and diagnosis processes could be improved. We asked the research participants about their experiences of the autism assessment and diagnosis process to find out what worked well, who it worked well for and under what circumstances. Recommendations for change were developed by the research team and presented to delegates at six dissemination events. Delegates (including 250 clinicians, managers, parents/carers, commissioners and academics involved in autism assessment and diagnosis) were invited to select and rank the most important recommendations. In total, 121 people took part including 18 children and young people, 34 parents and 69 professionals. Participants described their experiences of the assessment and diagnosis process and challenges in the system including increased demand for assessments and there not being enough specialist skilled practitioners available to conduct assessments. Participants also described ways the childhood assessment and diagnosis process could be improved, including better information gathering during referral. The need to support families throughout the whole assessment process (and not just on receiving a diagnosis) was seen as very important. Seven key areas for improvement were identified: accurately recognising when to refer children, the referral process, service organisation, skill mix of autism assessment teams, the diagnostic assessment, feedback and report writing, and training for staff. Twelve recommendations for change were identified by delegates at the dissemination events. The findings can be used to help make recommendations for service development, reduce waiting times and improve the quality of childhood autism assessment services for children, young people and families.

Bibliography cited by this reference

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Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 18:17.

Cited references
39
With a DOI
27
Without a DOI, from raw bibliography text
12
0 / 39 (0.0%) cited references include at least one author identified as autistic.
References with data to complete
7 / 39 (17.9%)
References with detected author names
33 / 39 (84.6%)
Without detected author names
6
Without a structured title
7
Without a stable identifier
12
References with raw author names still to review
6
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
207
From DOI or external metadata
207
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
11
63 / 207 (30.4%) names are linked to an author already present in AutiHub. 144 / 207 (69.6%) names are not yet linked.
Names linked to a person identified as autistic
0 / 207 (0.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 0 / 63 (0.0%). Distinct people identified as autistic: 0 / 176 (0.0%).
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