BACKGROUND:
Individuals with autism spectrum disorder (ASD) are at risk to develop more pervasive emotion-dysregulation and as a consequence maladaptive coping as compared to non-autistic people (Conner et al., 2020; Maddox, Trubanova & White, 2017). Sensory differences and impaired interoceptive body-awareness may influence emotion-dysregulation. Maladaptive coping is reflected by a variety of harmful behaviours, particularly strong social avoidance, obsessive-compulsive symptoms, disordered eating, substance abuse, agitation, non-suicidal-self-injury (NSSI), and suicidal ideation and behaviour. For a part of these individuals, treatment as usual does not have any effect at all, causing a vicious circle of isolation, demoralization, life-long psychiatric treatments, and crisis.
As of yet, there is no empirically tested conceptual framework for the continued existence and treatment of severe emotion-dysregulation in individuals with autism. As a consequence, research into treatment of adults with severe emotion-dysregulation is scarce, and it remains unknown which are the potential factors and mechanisms that predict, advance, and hinder the pathway to recovery.
Dialectical Behaviour Therapy (DBT) is an empirically supported psychotherapy to treat emotion-dysregulation, particularly in individuals with borderline personality disorder (Linehan, 1993). An effective inpatient treatment for adults with ASD and severe emotion-dysregulation is lacking, as well insight in the development of the process of self-regulation, particularly the role of sensory hyper- and hyposensitivity and interoceptive body-awareness. Therefore, an integrated, mostly inpatient treatment program based on DBT is developed and outcomes will be evaluated in the currently presented research. Standard DBT is used, adapted to adults with ASD, and augmented with a body-oriented DBT- skills training, because of their possible impairments of interoceptive body-awareness. Experiences of participants with the treatment program, the mechanisms and processes that hinder and advance the pathway to recovery will be studied, in order to make the treatment more tailored and effective for this target group.
OBJECTIVES: The first aim is to quantify the effectiveness of integrated DBT in adults with ASD and difficult to treat severe emotion-dysregulation and maladaptive coping (primary outcome measure). The second aim is to determine in an exploratory way, the sequence and tendency of changes in sensory hyper- and hyposensitivity, interoceptive body-awareness, cognitive and behavioural emotion-regulation, and well-being in short-term and long-term to get insight in the process and sustainability of self-regulation (secondary outcome measures). The third aim is to determine how qualitative findings regarding patients’ experiences with integrated DBT enhance the understanding of the quantitative clinical outcomes, in order to make the treatment more tailored and effective in the pathway to recovery.
RESEARCH QUESTIONS AND OUTCOME MEASURES:
1. Primary outcome measure: Is integrated DBT effective in adults with ASD and difficult to treat severe emotion-dysregulation in: a. a decrease of maladaptive coping, such as suicidal ideation and behaviour, NSSI, substance abuse and other personalized goals concerning maladaptive coping? b. an increase in variety and frequency of used adaptive coping skills?
2. Secondary outcome measures: a. Does integrated DBT result in improvements on sensory hyper- and hyposensitivity, interoceptive body-awareness, cognitive and behavioural emotion-regulation, and well-being? b. Is the level of sensory hyper- and hyposensitivity indicative for changes in cognitive and behavioural emotion-regulation, NSSI, suicidal ideation and behaviour? c. What are the changes over time in secondary outcome measures, and what is their possible meaning for the understanding of the development of self-regulation?
3. a. Does integrated DBT match with the goals, needs and possibilities of the participants? b. What is the participants perspective on (not) reaching their goals? c. What is the impact of integrated DBT on their well-being?