Deborah Garland

Parents Suggest Which Indicators of Progress and Outcomes Should Be Measured in Young Children with Autism Spectrum Disorder.

Evaluation of interventions for children with autism spectrum disorder (ASD) is hampered by the multitude of outcomes measured and tools used. Measurement in research with young children tends to focus on core impairments in ASD. We conducted a systematic review of qualitative studies of what matters to parents. Parent advisory groups completed structured activities to explore their perceptions of the relative importance of a wide range of outcome constructs. Their highest ranked outcomes impacted directly on everyday life and functioning (anxiety, distress, hypersensitivity, sleep problems, happiness, relationships with brothers and sisters, and parent stress). Collaboration between professionals, researchers and parents/carers is required to determine an agreed core set of outcomes to use across evaluation research.

Predictors of quality of life for autistic adults: Quality of life of autistic adults

Research with adults on the autism spectrum is as yet limited in scope and quality. The present study describes quality of life (QoL) of a large sample of autistic adults in the UK and investigates characteristics that may be predictive of QoL. A total of 370 autistic adults from the Adult Autism Spectrum Cohort‐UK (ASC‐UK) completed the WHOQoL‐BREF, and the Social Responsiveness Scale (SRS, autism symptom severity), along with the ASC‐UK registration questionnaire giving information on mental health and their life situation. QoL for autistic adults was lower than for the general population for each WHOQoL domain. Younger participants reported higher QoL than older participants in psychological and environment domains. Males reported higher physical QoL than females, and females reported higher social QoL than males. Significant positive predictors of QoL were: being employed (physical QoL), receiving support (social and environment QoL), and being in a relationship (social QoL). Having a mental health condition and higher SRS total score were negative predictors of QoL across all four domains. Autistic adults require access to effective mental health interventions, and informal and formal support for their social difficulties, to improve their quality of life. Autism Res 2018, 11: 1138–1147.

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.

Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults

Very little is known about autism and adulthood. Family members are often the primary support for autistic adults and frequently express concerns about what the future will hold and what support will be available for their relative. 120 family members of autistic adults completed an online survey exploring concerns about the future for their relative. The most endorsed concerns were “their needs won’t be met” (77% worried weekly), “whether they will be happy” (72% worried weekly) and “who will care for them” (58% worried weekly). The results highlight the importance of implementing structured and timely support through collaboration with governmental policy, local commissioning and communication with charities to help prepare family members and their autistic relative for the future.

Mental Wellbeing of Family Members of Autistic Adults

Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer’s wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer.