Parents' Opinions about an Intervention to Manage Repetitive Behaviours in Young Children with Autism Spectrum Disorder: A Qualitative Study.

BACKGROUND: Early intervention for autism spectrum disorder (ASD) tends to focus on enhancing social communication skills. We report data collected via focus group discussions as part of a feasibility and acceptability pilot randomized controlled trial (RCT) about a new parent group intervention to manage restricted and repetitive behaviours (RRB) in young children with ASD. METHODS: The focus groups were led by two independent facilitators and followed a semi-structured topic guide with the aim of considering three key topics: experiences of participating in a RCT, opinions about the intervention and the impact of the intervention on the participants, their children and the family. RESULTS: Fourteen participants attended the focus groups. Most participants reported that they had little knowledge of RRB before attending the intervention and that it had had a positive impact on them, their children and their family. CONCLUSION: The findings support the view that there is an unmet need for a parent-mediated intervention focusing on RRB.

Facing the Unknown: Intolerance of Uncertainty in Children with Autism Spectrum Disorder.

BACKGROUND: Anxiety is a common problem for children with autism spectrum disorder (ASD). Recent research indicates that intolerance of uncertainty (IU) may be an important aspect of anxiety for this population. IU is the belief that uncertainty is upsetting, and not knowing what is going to happen is negative. There is little known about the phenomenology of IU in children with ASD. We therefore present data from parent focus groups exploring this concept in children with ASD. METHODS: Participants were asked to differentiate IU from dislike of change and fear, and to discuss examples of IU and the strategies they use to manage it. Their experiences of IU and strategies are presented. RESULTS: IU was evident across novel and familiar situations and parents used a variety of strategies to manage IU. Their experiences of IU and strategies used are presented. CONCLUSIONS: Participants were able to identify and provide examples of IU suggesting that it is a recognizable construct among children with ASD.

Towards a Treatment for Intolerance of Uncertainty in Young People with Autism Spectrum Disorder: Development of the Coping with Uncertainty in Everyday Situations (CUES©) Programme.

Intolerance of uncertainty (IU) is indicated as an important transdiagnostic process variable in a range of anxiety disorders. Anxiety is very common in children with autism spectrum disorders (ASD). This study aimed to develop a parent group based manualised treatment programme for young people with ASD, which focused on IU. An eight session programme was developed and then delivered to 11 parents across three treatment groups, two recruited via a research data base and one via clinical services. Data regarding retention, acceptability and feasibility indicate that the parents valued the programme. Effect size analyses of outcome measures for potential use in larger trial indicate that the programme has promise as a treatment option of your people with ASD and IU.

The review of new evidence 5 years later: SAMHSA's National Registry of Evidence-based Programs and Practices (NREPP).

The Substance Abuse and Mental Health Services Administration (SAMHSA) decided that NREPP should offer a second review option for interventions that have already been reviewed and included in the registry for 5 years. Principals from 135 such interventions were invited to participate in a second review, and an exploratory study of the Principals' responses to this invitation was conducted. The study used a mixed-method approach, quantitatively describing characteristics of Principals and their interventions and qualitatively summarizing feedback from phone interviews with a convenience sample of Principals participating in a second review. Of the Principals invited, 21% accepted a second review, 24% were interested but unable or not ready to submit materials, and 56% did not accept or did not respond. Mental health treatment interventions were more likely to undergo a second review, and substance abuse treatment interventions were less likely. Similar percentages of interventions undergoing a second review had received funding from the National Institutes of Health (86%) and had been evaluated in a comparative effectiveness research study (79%). Overall ratings for interventions improved in each second review completed. The interviewed Principals perceived potentially lower ratings as the only risk in participating in a second review.