Over the past two decades, there has been a significant rise in the recognition and diagnosis of autism across the age ranges in the UK (Russell Reference Russell, Stapley and Newlove-Delgado2022). According to the British Medical Association (BMA), 1 in 100 children in the UK have a diagnosis of autism, but the vast majority of these had a long wait between the assessment being requested and eventual diagnosis (BMA 2024). The BMA highlights concern regarding the impact of this wait on the child and their family. We have estimated that around 65% of the children in our child and adolescent mental health service (CAMHS) in south-west England either have identified social communication difficulties or a diagnosis of autism. As suggested by the BMA, is it possible that factors such as late diagnosis and associated lack of appropriate support at a crucial developmental stage in the child’s life may be contributing to their stress levels and mental health presentations.
Despite the high numbers of these children in our locality CAMHS, recent research has highlighted the lack of a clear treatment pathway within services for young people with co-occurring autism or suspected autism and complex mental health problems (O’Connor Reference O’Connor, Griffin and Corrigan2024). Once a young person is accepted into CAMHS, the specialist work offered in the clinic involves talking therapies recommended by the National Institute for Health and Care Excellence (2013), such as cognitive–behavioural therapy, psychotherapy or family therapy, that have usually been developed with neurotypical children. The recommended adaptations for autistic children are effective, but are an add-on to existing practice that are dependent on individual practitioners to implement. There are no interventions that have been specifically developed with or for the cohort of children who appear, at least in our CAMHS, to be the predominant patient group. This poor fit may explain in part why many of these children do not engage with what we are offering in CAMHS, and they are overrepresented in Tier 4 services (BMA 2024).
The engagement problem
As practitioners working in CAMHS we are regularly trying to work with these young people using traditional approaches that do not seem a good fit. Many young people with social communication difficulties or autism, particularly from lower socioeconomic backgrounds, struggle to build the therapeutic relationships needed to engage with talking therapies in the same way as their neurotypical peers. Reasons for this may include the fact that therapy is inherently about sitting down and talking, something that many children with social communication difficulties and autism, by definition, struggle with. Other factors may be that many of these young people have experienced significant bullying (Park Reference Park, Hong and Kim2020) or have been misunderstood by adults they trusted, so are wary of meeting and trusting new people. It may also be that their families are less able to support them owing to their own additional needs. What is evident is that for CAMHS to deliver an equitable service to these young people, we will need to significantly adapt our approach. We decided to move away from the traditional model of therapy and meet the young people where they were.
We proposed a novel way of working involving two visits per week in the young people’s homes, which focused on what was important to them rather than formally trying to introduce them to a treatment model. We prioritised genuine connection and relationship building while actively engaging in things that mattered to the young person. In this way we hoped we could build trust and a working relationship without depending on social communication alone. As the relationship developed, if we noticed unhelpful patterns of thoughts, feelings and behaviours, we supported the young person by modelling or gently introducing simple core skills from the acceptance and commitment therapy (ACT) model (Hayes Reference Hayes, Strosahl and Wilson2011). These included being values focused, encouraging awareness but not being led by thoughts and feelings, and taking action on things that matter to the young person even if doing so was uncomfortable for them.
The service improvement pilot
We trialled this approach in a service improvement pilot study in a CAMHS team in Bristol over a 6-month period, after which we evaluated the intervention and the results. Five assistant psychologists labelled ‘recovery navigators’ received 6 h of training in relationship building and basic ACT principles. They attended individual and group supervision with a registered cognitive–behavioural therapist and a clinical psychologist. Five isolated young people with social communication difficulties and/or autism were each matched with a recovery navigator, who met with them twice weekly in their homes. During this time, the team liaised with CAMHS partnership workers and the young person’s support network where appropriate.
During the pilot (Lunstone Reference Lunstone, Jackson-Brown and Inker2024), all five young people built trusting relationships with their recovery navigators. All five become less isolated and met with other young people in groups or an education setting or both. Parents’ ratings of their child on the Revised Anxiety and Depression Scale indicated that three of the young people no longer met clinical thresholds for depression or anxiety. Interviews with the parents showed that they felt that home visits and values-based activities were key to the engagement and that the key change they saw was in the confidence of their child. Following the pilot, two of the young people were discharged from CAMHS, two remained open for medication monitoring only and one began accepting CAMHS support for the first time. The cost of the pilot per child was approximately half the cost of their treatment in CAMHS prior to the pilot. The adapted approach had facilitated clinical engagement, supported participation in activities outside the home and led to an improvement in the young people’s mental health.
The following is an anonymised clinical example to demonstrate the main phases of the pilot intervention.
Clinical example
Lily had been open to CAMHS for about 2 years and had refused to meet any clinicians in that time. On a home visit by the psychiatrist, she had remained behind her bedroom door while her mother spoke for her. Lily had dropped out of school, only had one friend, whom she had met online, and refused to leave the house. CAMHS reports described her as experiencing high levels of anxiety and limiting her food intake. Our work with Lily is outlined in Fig. 1, with the key ACT processes highlighted.
The child and adolescent mental health service (CAMHS) team’s work with Lily, using the values-focused intervention. The key processes of the acceptance and commitment therapy element are shown in bold. RN, recovery navigator.
Reflections
Despite being a very small pilot study, the outcomes demonstrate that an approach more tailored to the specific needs of these young people can enable them to engage meaningfully, leading to an improvement in their mental health and quality of life. To offer something like this routinely within CAMHS could transform the experiences of these young people. However, this would require a shift away from the traditional problem-focused, clinic-based talking therapy approach.
We recognise the challenge of implementing change across an established system that is already under immense pressure. Therefore, future research should aim to test the feasibility and replicability of this kind of intervention across the CAMHS. This should include investigation of the potential benefits to the well-being of this patient group and the financial implications for the service. To develop this approach further, we have invited the young people who took part in the pilot to provide further feedback and co-create the plans for the next implementation. Working alongside these young people, Avon and Wiltshire Mental Health Partnership NHS Trust and the University of Bath, we hope to develop tools that can be used within CAMHS to better meet the needs of this patient group.
Author contributions
N.L. is the lead author in this manuscript. She raised awareness of the issue in CAMHS, ran the pilot study, authored the first draft of this article and was involved in editing subsequent drafts. C.L. had the idea of writing the article, developed its structure, suggested content, edited and reviewed the multiple versions of it and agreed the final draft. N.I. and R.Q. were involved in the original run of the pilot and joined the authorship for this version of the article. They helped restructure it in light of the reviewer’s comments and in particular they wrote a substantial part of the introductory paragraphs and final reflections. They also agreed the final draft.
Funding
The project was a service improvement pilot study supported and approved by Avon and Wiltshire Mental Health Parnership NHS Trust.
Declaration of interest
None.
eLetters
No eLetters have been published for this article.