To Örebro University

BACKGROUND: To meet the needs of individuals diagnosed with autism, internet-based interventions have been developed with a variety of objectives. A deeper understanding of the mechanisms of change may help tailor interventions to individual needs. The communicative behaviors of individuals with autism participating in text-based internet-based interventions remain largely unexplored, as do their potential relations to clinical outcomes. An improved understanding of participants' behaviors may help therapists better tailor support, promote engagement, and enhance treatment outcomes.

OBJECTIVE: This study aimed to explore the communicative behaviors of individuals with autism participating in an internet-based intervention and to examine whether different behavioral patterns were associated with treatment outcomes or treatment adherence.

METHODS: Messages from 34 participants enrolled in an 18-week internet-based cognitive behavioral therapy program were analyzed using abductive qualitative content analysis. Correlational analyses were used to examine the relationships between qualitative categories and change scores on outcome measures and rates of module completion.

RESULTS: Fourteen behavioral categories were identified and grouped into three overarching domains: (1) "This is me," which encompasses the participants' narratives on identity, personality, autistic functioning, current and past circumstances, and worldview; (2) "Working with the treatment," which included statements related to engagement with the treatment process; and (3) "I struggle," which comprised of past and present negative experiences and challenges. Correlational analyses revealed associations between several behavioral categories and improvements in quality of life and treatment adherence.

CONCLUSIONS: The findings highlight the importance of self-narrative formulation among individuals with autism and suggest that certain communicative behaviors-particularly those involving identity reflection and recognition of treatment-related gains-were positively associated with therapeutic outcomes. The findings enhance our understanding of how individuals with autism engage in internet-based cognitive behavioral therapy and may serve as a valuable source of information for therapists when guiding expectations regarding client outcomes and identifying participants who may benefit from additional support.

TRIAL REGISTRATION: ClinicalTrials.gov NCT03570372; https://clinicaltrials.gov/study/NCT03570372.

Sense of coherence reflects the ability to comprehend and interpret one's environment as coherent and to experience life as manageable and meaningful. Sense of coherence is predictive of quality of life in several populations, but this relation has not been investigated among autistic individuals. Even though autistic individuals often describe difficulties perceiving the world in a coherent way, the sense of coherence concept is relatively unexplored in autism. The aim of this study was to explore the relationship between autistic traits, sense of coherence and quality of life in autistic individuals in Sweden. A total of 81 adults with autism completed questionnaires covering their sense of coherence, quality of life and autistic traits. The results showed that sense of coherence predicted quality of life and that autistic traits predicted sense of coherence levels in our sample. Based on the results, we suggest that sense of coherence may be important for the understanding of autistic functioning and that sense of coherence is essential for quality of life in this group. The study contributes to the understanding of autistic functioning and adds useful knowledge for the development of appropriate interventions for autistic individuals. Interventions that address aspects aimed at increasing the individual's sense of coherence may therefore be warranted.

Sense of coherence reflects a person's sense that their environment is understandable, that they can manage life's challenges and that they judge it to be meaningful. In many populations, a strong sense of coherence is linked to a higher quality of life, but this relation has not been studied among autistic individuals. Even though autistic individuals often describe difficulties perceiving the world in a coherent way, the concept of sense of coherence is relatively unexplored among individuals with autism. This study explored the links between autistic traits, sense of coherence and quality of life in 81 autistic adults in Sweden who completed a series of questionnaires. We found that sense of coherence was a strong predictor of quality of life. We also discovered that having more autistic traits was linked to a weak sense of coherence. Based on our results, we suggest that sense of coherence may be important to understand autistic functioning. We also conclude that sense of coherence is important for quality of life in this group. This suggests that interventions designed to help individuals see their world as more coherent and manageable could be a valuable way to improve their quality of life.

Many individuals with autism suffer from psychiatric comorbidity or experience low life quality, followed by a need for psychological healthcare. However, traditional interventions may not be adapted enough to their needs. Internet-based formats have the potential to increase access to necessary healthcare. Within this project, we developed an internet-based intervention targeting a range of life areas often struggled with by individuals with autism. The overall aim of this thesis is to investigate the feasibility, effectiveness and experiences of - as well as the participants’ communicative patterns in - the internet-based intervention, and to explore the concept sense of coherence in autistic adults. Study I is a longitudinal RCT evaluating the effects of the internet-based intervention in the quality of life and psychiatric symptoms of the participants. Study II is a qualitative interview study exploring the participant experiences of the intervention. Study III is a mixed method study exploring the participant’s communicative behavior during the intervention, and their potential relation to clinical outcomes. Study IV is a cross-sectional study investigating the sense of coherence among autistic individuals and its relation to autistic traits and quality of life.The findings of the four studies that constitute this thesis enhance our understanding of how an internet-based intervention can be adapted, implemented, and evaluated for individuals with autism. Furthermore, they provide insight into communicative behaviors that may be beneficial for participants to engage in during such an intervention, as well as clarify the relationship between autistic traits and sense of coherence in adults with autism.

BACKGROUND: The increased prevalence of Autism Spectrum Disorder (ASD) diagnoses in combination with psychiatric comorbidity, has led to an increased need for effective interventions. The evidence for internet-based interventions for several mental health problems is established but has not been evaluated for adults with ASD.

OBJECTIVE: The aim of this randomized controlled trial is to evaluate the feasibility and effects of an internet-based intervention targeting quality of life and psychiatric symptoms (depression and anxiety) in adults with ASD. METHODS: 84 participants were randomly allocated to intervention (n = 42) or control (n = 42). The 18-week internet-based intervention covered a range of themes related to difficulties common in ASD, and exercises based on cognitive behavioral strategies. Participants were provided with individual feedback following each module and were invited to regular chat sessions with peer participants. The primary outcomes were subjective quality of life and sense of coherence, and secondary outcomes were symptoms of depression and anxiety. All outcomes were measured at five occasions and analysed with linear mixed effect models. Participant satisfaction and adherence was also analysed.

RESULTS: Participant satisfaction and adherence was satisfactory but no significant interaction between group and time was found for any outcome measure. Autistic traits were negatively related to quality of life and sense of coherence and positively related to anxiety and depressive symptoms.

CONCLUSIONS: This internet-based intervention showed feasibility regarding adherence and participant satisfaction. However, no significant effects on quality of life, sense of coherence or psychiatric symptoms were found, likely due to limitations in the design and methodology of this specific trial in combination to the heterogeneity of the group. Individuals with ASD may require interventions that are flexible and individually tailored in regard to both format, content and therapeutic support. The current trial provides useful information and suggestions for the future research on internet-based interventions for ASD.

BACKGROUND: Autism spectrum disorder (ASD) and schizotypal personality disorder can be difficult to distinguish. Deficits in social relationships and social interaction, present in both conditions, are known to impair quality of life. The aim of the present study was to investigate if schizotypal symptoms affect quality of life among adults diagnosed with autism spectrum disorder and to study the association between schizotypy and autistic traits among them.

METHODS: Participants diagnosed with autism spectrum disorder (n = 110) completed questionnaires exploring schizotypy (Schizotypal Personality Questionnaire - Brief Revised (SPQ-BR)), autistic traits (The Ritvo Autism, Asperger Diagnostic Scale-Revised Screen 14 items), anxiety and depression (The Hospital Anxiety and Depression scale) and quality of life (Brunnsviken Brief Quality of Life Scale and the European quality of life index version 5D).

RESULTS: Schizotypy was found to be associated with anxiety, depressive and autistic symptoms, and poor quality of life. Although schizotypy was a predictor for impaired quality of life, this relationship was mediated by symptoms of anxiety and depression, plausibly inherent to autism. Autistic traits were positively associated with all higher order constructs of the SPQ-BR, i.e. positive and negative schizotypy, disorganization and social anxiety, as well as with poor quality of life.

CONCLUSIONS: There is considerable overlap between schizotypy and autism that needs to be considered in research. Prominent schizotypal traits in people with ASD may constitute an endophenotype coinciding with a particularly poor quality of life.

TRIAL REGISTRATION: ClinicalTrials.gov identifier:  NCT03570372 : Internet-based Treatment for Adults with Autism Spectrum Disorder (MILAS).

Background: Adults with autism spectrum disorder face several barriers to accessing evidence-based care, including difficulties in communicating needs, social anxiety or in traveling to a health care unit. In recent years, several forms of internet-based treatments have shown to be effective for a variety of psychiatric conditions. Internet-based treatment alternatives allow convenient and flexible formats, and therefore have the potential to increase access to health care for individuals with autism spectrum disorder. However, knowledge about how internet-based treatment features may suit the needs of individuals with autism is limited. The aim of this study was to explore the participant experiences of an internet-based intervention for adults with autism spectrum disorder. The primary focus of the investigation was on autism-specific needs in relation to the features unique to the online format.

Methods: In this qualitative study, semi-structured telephone interviews were conducted with 14 participants who had completed a text-based internet-based intervention for adults with autism spectrum disorder. We used an inductive approach and analyzed the data using qualitative content analysis.

Results: Five main categories were identified: (1) implications of the online format, (2) the fixed non-individualized model, (3) therapist interaction, (4) interacting with other participants, and (5) making use of the treatment content. Overall, participants appreciated the availability and that they could work on their treatment independent of time or location. Among those participating in group-based chat-sessions with the other participants, it was considered a generally positive experience. Furthermore, most participants felt safe and relaxed in relation to the therapist and appreciated the text-based format. However, several participants felt that the format and content of the treatment was not sufficiently adapted to their individual life situation.

Conclusion: In conclusion, this internet-based treatment constitutes an accessible and energy-saving treatment alternative for adults with autism. Further, integrating group-based components seems feasible in an otherwise individual internet-based treatment for individuals with autism. However, group-based components do require a clear purpose and rationale. Future studies should develop and evaluate treatment adaptations tailored to individual needs.