Improving outcomes for people with autism spectrum disorders by reducing mental health problems: the IAMHealth research programme including one RCT

Simonoff, Emily, Baird, Gillian, Beresford, Bryony, Charman, Tony, Knapp, Martin ORCID: 0000-0003-1427-0215, Pickles, Andrew, Povey, Carol, Purser, Tom, Santosh, Paramala, Slonims, Vicky and Scott, Stephen (2025) Improving outcomes for people with autism spectrum disorders by reducing mental health problems: the IAMHealth research programme including one RCT. Programme Grants for Applied Research, 13 (5). ISSN 2050-4322

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Abstract

Background: Autism is a neurodevelopmental condition whose core symptoms include impairments in social communication, restricted and repetitive behaviours and sensory atypicalities, which can have varying severity. Most autistic people experience additional, impairing mental health and behavioural problems, but these are often under-recognised by healthcare professionals, autistic people and their caretakers. Objective(s): We aim to improve identification of mental health problems by developing a tool for clinical use, which can also be used to monitor treatment response. Design: Work package 1: We developed and validated a new instrument to provide improved detection of mental health and behavioural problems in autistic people from childhood through to adult life. Work package 2: We explored how autistic young adults understand and manage their mental health. Work package 3: We undertook a cohort study to identify risk and protective factors for mental health and behavioural problems in autistic adolescents. Work package 4: We undertook a pilot feasibility randomised controlled trial of Predictive Parenting compared to group-based psychoeducation and active control intervention. It was not the aim of the pilot feasibility randomised controlled trial to undertake hypothesis testing. Setting: Participants in work package 1 were ascertained through clinical sites within London and Liverpool and through specialist autism schools in London. In work package 2, participants were selected from a cohort originally ascertained from 11 regions across south-east England. Participants were drawn from London Boroughs of Bromley and Lewisham (work packages 3 and 4) and London Borough of Lambeth (work package 4). Participants: Work package 1: 255 parents of autistic children/adolescent; work package 2: 19 autistic young adults; work package 3: QUEST cohort of 277 children; work package: 62 children. Intervention: Predictive Parenting-a novel parent-mediated intervention. Main outcome measure: Work package 4: A blinded observational measure of child behaviours that challenge. Results: We developed the Assessment of Concerning Behaviour to be completed by parents/caretakers, autistic children/young people/adults and teachers, and showed it has two reliable and valid subscales reflecting emotional and behavioural problems. We identified that poor or incomplete understanding of autism affected young adults’ and parents’ understanding, discernment and management of mental health difficulties. We showed strong continuity of emotional and behavioural problems as well as attention deficit hyperactivity disorder from early childhood to late adolescence, with prediction being largely within domain (emotional, behavioural or attention deficit hyperactivity disorder). Early childhood attention deficit hyperactivity disorder symptoms had a significant negative impact on adolescent everyday functioning. At an individual level, parents’ accounts suggested multiple factors may affect mental health trajectories and outcomes in the late teenage years. Our pilot feasibility trial of our new intervention, Predictive Parenting, directed at parents of young autistic children was highly acceptable and feasible to deliver. Limitations: To date, only the parent version of the Assessment of Concerning Behaviour has had its psychometric properties ascertained. We combined clinical and non-clinical samples and the scale could have different psychometric properties for these two groups. The qualitative work in work package 2 was limited to young adults without an intellectual disability and there was under-representation of females and non-white ethnicity, as well as those with severe mental health problems. The QUEST cohort in work package 3 was derived from those receiving an early autism diagnosis, who are more likely to have severe autistic presentations and intellectual disability, so the results may not generalise to the full autistic population. The pilot feasibility study had a small sample size and hence modest power to detect group differences; the lack of an objective rating of intervention fidelity; the lack of a treatment as usual group to track the natural trajectory of child and parent behaviours over time; and the fact that although the researchers who coded the observational measure were blinded to intervention allocation, they were not blinded to time point. Conclusions: The research undertaken in the current programme shows that mental health and behavioural problems are more common in autistic people and are strongly persistent over time, even when they commence in the early childhood period. Interventions for mental health and behavioural problems are a priority for autistic people and their families. However, we showed that autistic people and their families often find it difficult to discern the difference between autistic features and mental health and behavioural problems. Future work: A definitive randomised controlled trial including an economic evaluation is needed to determine the effectiveness and cost-effectiveness of Predictive Parenting. Future longitudinal research could focus on modifiable risk and resilience factors related to mental health problems in autistic people and could determine whether routine use of mental health screening questionnaires increases the identification and treatment of mental health problems in autistic children and young people. Trial registration: This trial is registered as Current Controlled Trials ISRCTN91411078.

Item Type:	Article
Additional Information:	© 2025 The Authors
Divisions:	Care Policy and Evaluation Centre Health Policy
Subjects:	R Medicine > RA Public aspects of medicine
Date Deposited:	29 May 2025 14:48
Last Modified:	23 Jun 2025 16:04
URI:	http://eprints.lse.ac.uk/id/eprint/128221

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