Understanding Autism - Chapter 7: Challenging clinical presentations in Autism Spectrum Disorders and Intellectual Disability: The case for specialist intensive community interventions as an alternative to institutional care

Autism spectrum disorders (ASDs) with or without intellectual disability (ID) are frequently associated with comorbid mental health conditions and behaviors that place a significant challenge to children and young people and their families. These combinations of difficulties occasionally reach the point where safe management in the community is considered unfeasible, and therefore a residential/inpatient setting is pursued. This is despite wide recognition that such an option has disadvantages for the person’s overall development and can be experienced as a negative rather than helpful intervention by many families. Importantly, it has been recognized that institutional care may be associated with suboptimal management of the person’s difficulties, amounting to even abuse (Department of Health, 2012). As a result, the provision of effective and positive support in the community has been high on the United Kingdom national agenda for children, young people, and adults with ASD and ID, aiming to end over-reliance on mental health hospital admissions and residential settings (Dilks-Hopper et al., 2019; Reid et al., 2013). In this chapter, we will present the rationale for specialist intensive community interventions for young people with ASD and ID, challenge the beliefs about the acceptability of institutional care for this population other than as a last resort for the minimum possible time, share our experience on how intensive community input works in practice, and highlight the importance of developing such services with national coverage. We will also discuss efficient care pathways including the optimal referral and assessment process, helpful interventions and gaps in the evidence base, and successful coordination between different mental health teams and other agencies. We will argue that specialist intensive community management for children and young people with ASD and ID is an effective and preferable alternative to institutional care.