A national research survey of childhood autism assessment services in the UK: empirical evidence of diagnostic practice, challenges and improvement opportunities



For many families in the UK, autism diagnosis can feel like a crucial missing piece of the puzzle. It unlocks access to support services, educational interventions, and a deeper understanding of a child’s unique needs. However, a recent national research survey published in BMJ Paediatrics Open (June 2024) paints a complex picture of the current state of childhood autism assessment in the NHS.

The research, titled “A national research survey of childhood autism assessment services in the UK: empirical evidence of diagnostic practice, challenges and improvement opportunities,” sheds light on the growing demand for assessments, the challenges faced by diagnostic teams, and the potential pathways for improvement.


A Surge in Referrals, Strained Resources


The NHS is experiencing a significant rise in referrals for childhood autism assessment. The study found a staggering 115% increase in referrals between 2015 and 2019. This surge in demand puts a strain on existing resources, with many diagnostic teams struggling to keep up with wait times and ensure comprehensive assessments for all children referred.

Beyond the Numbers: Increased Complexity of Cases


The challenge extends beyond just the number of referrals. The research highlights a concerning trend of increased case complexity. Children referred for assessment often have co-occurring conditions, such as mental health issues or other neurodevelopmental disorders. This complexity necessitates a more nuanced and time-consuming assessment process, further straining already stretched resources.

Meeting the Benchmark: The NICE Guideline Challenge


The National Institute for Health and Care Excellence (NICE) has established best practice guidelines for autism assessments. These guidelines ensure consistency and accuracy in diagnoses. However, the research reveals a concerning gap – many diagnostic teams reported difficulty meeting these NICE guidelines. This could be due to factors like limited time, incomplete multidisciplinary teams (MDTs), or a lack of training on the latest assessment tools.


Funding and Staffing Shortages: A Double-Edged Sword


The research suggests that funding for childhood autism assessment services has stagnated or even decreased in some areas. This lack of investment has a ripple effect. It makes it difficult for teams to hire and retain qualified professionals, leading to shortages in crucial areas like speech and language therapy, psychology, and pediatrics. Incomplete MDTs can hinder the ability to conduct comprehensive assessments that address the full spectrum of a child’s needs.

A Path Forward: Collaboration and Investment


Despite the challenges, the research also identified areas where significant improvements can be made. Here are some key takeaways:

  • Investment in MDT Expertise: Diagnostic teams themselves emphasized the need for investment in MDT expertise. Complete MDTs with qualified professionals from various disciplines can ensure a more thorough assessment process that caters to a child’s specific needs.
  • Collaboration Between Services: The research suggests that collaboration between paediatric and CAMHS (Child and Adolescent Mental Health Services) teams could be immensely beneficial. By working together, these teams can bridge potential competency gaps and ensure assessments encompass both neurodevelopmental and mental health needs.
  • Service Improvement Strategies: The research highlights various service improvement strategies proposed by diagnostic teams themselves. These strategies could include streamlining referral processes, implementing standardized assessment tools, and providing ongoing training for staff.


Hope on the Horizon: A More Efficient System for Children with Autism


This research is a valuable resource for policymakers, healthcare commissioners, and clinical teams working in childhood autism assessment. By understanding the challenges faced by the system, stakeholders can work towards solutions that improve access to timely and accurate diagnoses for children with autism.

The research also offers a glimmer of hope for parents and caregivers navigating the assessment process. The identification of improvement opportunities paves the way for a more efficient and effective system that ultimately serves children on the autism spectrum better.



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