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

• Published in: BMJ paediatrics open 2024-06, Vol.8 (1), p.e002496
• Main Authors: Parr, Jeremy, Wigham, Sarah, Farr, William, Male, Ian, Isard, Lucy, Lees, Rhianna, Reddy, Venkat, Saunders, Gráinne, Grahame, Victoria
• Format: Article
• Language: English
• Subjects: Adolescent; autism; Autistic children; Autistic Disorder - diagnosis; Autistic Disorder - epidemiology; Autistic Disorder - therapy; Child; Child & adolescent mental health; Child Health Services; child psychiatry; Child, Preschool; Childhood; data collection; Families & family life; Female; General Paediatrics; Health Care Surveys; Health services; health services research; Humans; Infant; Male; Medical diagnosis; Mental disorders; Mental health care; Pediatrics; Professionals; Referral and Consultation; State Medicine; Surveys and Questionnaires; United Kingdom - epidemiology
• ISSN: 2399-9772; 2399-9772
• DOI: 10.1136/bmjpo-2024-002496

BackgroundThe UK National Health Service (NHS) Long Term Plan aims to reduce waiting times for childhood autism diagnostic assessment and improve parent and child satisfaction. This empirical research investigated current childhood diagnostic practice provision, and changes made by teams to address challenges faced.MethodsData were collected using an online semi-structured research questionnaire. UK childhood autism diagnostic assessment services (for children aged 1–18 years) were invited to participate through multidisciplinary clinical networks, special interest groups and professionals mailing lists. The study was on the National Institute for Health Research Clinical Research Network portfolio.Results128 clinicians from diverse NHS services responded including: 10 (8%) integrated services, 46 (36%) Child and Adolescent Mental Health Services (CAMHS) and 72 (56%) paediatric services. A minority of services (23, 17.9%) reported always meeting the National Institute for Health and Care Excellence guidance for assessment. Referrals rose 115% between 2015 and 2019. Clinicians described increased child and family complexity compared with previously; children had more co-occurring physical, mental health and neurodevelopmental conditions and there were more frequent family health problems and safeguarding concerns. Most services (97, 75.8%) reported recent funding stayed constant/decreased. Incomplete multidisciplinary teams (MDTs) were frequently reported; a minority of services reported increased availability of professionals, and some experienced reductions in key professionals. Many teams were unable to undertake assessments or make recommendations for associated neurodevelopmental and co-existing conditions. Teams described improvement strategies implemented (eg, adapting professionals’ roles, supporting parents).ConclusionsMost UK autism paediatric and CAMHS diagnostic teams experience significant challenges affecting the assessment of children with possible autism, and recommendations regarding treatment/intervention. Where CAMHS or paediatric services work in isolation, there are often competency gaps in MDTs and ability to deliver full neurodevelopmental and mental health assessments. Teams identified service improvement strategies; however, investment in MDT expertise is required to enable services to implement changes to meet the needs of children and families.