Transition-aged autistic youth : functioning, quality of life, and internet-delivered psychoeducation

Background: Transition-aged autistic youth, ranging from 16 to 25 years of age, often experience challenges in functioning and have a diminished quality of life (QoL). Several factors have been reported to be associated with these outcomes. However, limited studies have examined the self-reporting of transition-aged autistic youth regarding these outcomes, and few have analysed the specific impact of autistic traits and mental health problems on functioning and QoL. To enhance autism knowledge, promote active participation in healthcare, and improve QoL, psychoeducation is commonly recommended as an initial intervention following an autism diagnosis.

Aims: The aim of study I was to investigate self-reported functioning and QoL in transition-aged autistic youth and to analyse the relative importance of associated factors on the two outcomes. The aims of studies II and III were to evaluate a new internet-delivered psychoeducative intervention (SCOPE) by investigating (1) feasibility, evaluating intervention completion, credibility and satisfaction (study II); and (2) the pragmatic effectiveness of SCOPE (study III).

Methods: In study I, 140 transition-aged autistic youth were interviewed about their functioning and provided self-rating questionnaires about QoL. In addition, participants rated their autism symptom severity, symptoms of mental ill-health and answered a questionnaire on demographic details. We analysed functioning and QoL scores using descriptive statistics. We analysed associations between all variables, followed by entering the significant associations as independent variables into a linear regression model with either functioning or QoL as the dependent variable. In studies II and III, we evaluated SCOPE – containing eight autism-themed modules with weekly digital therapist support. For study II, we recruited n = 28 participants, aged 16-25 years. We evaluated feasibility through intervention completion rates, credibility using a self-report scale and satisfaction using module evaluations. We analysed preliminary effects regarding autism knowledge, symptoms of mental ill-health, life satisfaction and acceptance of diagnosis, collected at pre-, post-intervention and three-month follow-up. In study III we included n = 141 participants, aged 16-25 years, to be randomised according to 2:1:1 to SCOPE, self-study online of informative autism websites, or treatment as usual (TAU). The primary outcome of autism knowledge, and the secondary outcomes of symptoms of mental ill-health, QoL and acceptance of diagnosis were assessed at pre, post and follow-up.

Results: In study I, participants reported low functioning, on the 90th percentile compared to general population norms, indicating significant disability, and rated low overall QoL. The predictors that contributed the most to functioning were autism symptom severity and symptoms of anxiety, followed by gender and ADHD-diagnosis. Meanwhile, higher QoL was predicted by fewer anxiety and depression symptoms, as well as having friendships but not by autism symptom severity. In study II we observed 79% completers, as well as good treatment credibility and treatment satisfaction. Additionally, autism knowledge was increased post-intervention. These results were supported by findings in study III, where we found that SCOPE and self-study, but not TAU, increased autism knowledge post-intervention (primary outcome). However, the self-study participants' knowledge scores returned to baseline at the three-month follow-up. SCOPE participants had increased autism knowledge at follow-up compared to self-study and TAU, and the increase in knowledge was not coupled with significant changes in mental health problems. SCOPE participants reported improved QoL (secondary outcome) at post-intervention and three-month follow-up compared to both control conditions.

Conclusions: We highlight that functioning and QoL are predicted by several factors, necessitating a comprehensive assessment of transition-aged autistic youth, including information about autism traits and mental health problems, to plan tangible interventions. The SCOPE trials suggest that the internet-delivered psychoeducational intervention SCOPE is a feasible first-line intervention in terms of treatment completion. Further, SCOPE could increase youths’ autism knowledge and improve QoL.

List of scientific papers

I. Backman, A., Zander, E., Vigerland, S., Roll-Pettersson, L., Hirvikoski, T. (2023). Functioning and quality of life in transition-aged youth on the autism spectrum – associations with autism symptom severity and mental health problems. Research in Autism Spectrum Disorder. 104.
https://doi.org/10.1016/j.rasd.2023.102168

II. Backman, A., Mellblom, A., Norman-Claesson, E., Keith-Bodros, G., Frostvittra, M., Bölte, S., Hirvikoski, T. (2018). Internet-delivered psychoeducation for older adolescents and young adults with autism spectrum disorder SCOPE: An open feasibility study. Research in Autism Spectrum Disorder. 51-64.
https://doi.org/10.1016/j.rasd.2018.07.001

III. Backman, A., Mellblom, A., Norman-Claesson, E., Sundqvist, E., Roll-Pettersson, L., Zander, E., Vigerland, S., Hirvikoski, T. SCOPE internet-delivered psychoeducation for transition aged autistic youth: A Pragmatic Randomized Controlled Trial. [Submitted]