Health and social care services are under the dual pressure of high levels of vacancies and staff sickness (Buchan et al., 2017) and increased demand for support (Russell et al., 2022), especially in the area of mental health. This is particularly pertinent for autistic people, where there are long waiting lists for diagnostic assessment, and no guarantee of obtaining appropriate support for those who do obtain a diagnosis (Brede et al., 2022). In practice, support is often restricted to those with very severe needs, despite evidence that autistic people experience anxiety and are a high risk of self-harm (Blanchard et al., 2021; Lai et al., 2019). Given that early intervention among autistic adolescents can build resilience and help prevent mental health difficulties (Shochet et al., 2022), opportunities are being missed to support people effectively, and early enough. Innovation is needed in service access and service delivery to meet the demand and to improve prevention efforts.
Delivery of support services most frequently involves an initial referral by a professional, followed by an assessment, before any decision is made about whether support can be provided. This approach introduces barriers to receiving appropriate support (Howes, Burns & Surtees, 2021) and is not effective at engaging vulnerable populations. Self-referral, where an individual decides themselves that they need support, can mitigate many of these barriers and is commonly used by charities and in the private sector. Self-referral, for example, is a key aspect of the Improving Access to Psychological Therapies (IAPT) programme within NHS England (Brown et al., 2010), more recently renamed NHS Talking Therapies. As of 2020, there were over 200 IAPT services across England (Wakefield et al., 2021) which have significantly increased access to psychological therapies.
Given the high numbers of autistic people, 1.8% of young people (Roman-Urrestarazu et al., 2021), and suggestions that as many as 72% of autistic people in England are undiagnosed (O’Nions et al., 2023a), any service providing support for those self-referring needs to be scalable. High levels of smartphone ownership and the increasing role they play in the lives of young people offers a valuable opportunity for digital mental health. The National Health Service has highlighted mental health apps as cost-effective and scalable solutions to barriers (Chandrashekar, 2018). Existing digital mental health services, including websites and mobile apps, can offer greater and more rapid accessibility and anonymity (Bond et al., 2023) and show promise for marginalized and under-reached populations (Magid et al., 2023; Schueller et al., 2019). Brain in Hand (BiH) is such a service. It combines digital tools and practical human support to enable people to live more independently, with a particular focus on supporting the impact of executive functioning difficulties experienced by many autistic people. Research has shown that BiH is able to improve quality of life and reduce anxiety among autistic people (Tromans et al, 2023) and is a good example of a digital mental health solution that can be offered at scale to people aged 16 and up who are diagnosed autistic or who believe they may be autistic.
A scalable product needs to be linked to scalable access. Autistic people and their supporters often look for support through internet searches and social media (BiH, unpublished data) and young people specifically use search engines to find information on mental health (Pretorius, Chambers & Coyle, 2019). Searches containing the word ‘Autistic’ take place over 1 million times every month in the UK (BiH, unpublished data). Furthermore, digital media channels and social media are increasingly being used to reach research participants (Darko, Kleib & Olson, 2022) and in public health campaigns (de Vere Hunt & Linos, 2022), and evidence shows that social media is effective at targeting hard to reach groups (Jones & Salazar, 2016) and young people aged 16–24 (Darko et al., 2022). All the above suggests that digital media channels could be an effective approach to reach young autistic people with a service that they could self-refer to.
This study aimed to explore whether self-referral by autistic people to the digital mental health service, BiH, through a digital media campaign is a feasible and effective way to reach those in need, and potentially an innovative way to improve access to a range of scalable mental health interventions.