Leisure, Employment, Community Participation, and Quality of Life in Primary Caregivers of Autistic Children: A Qualitative Study.

PURPOSE: In prioritising the needs of their autistic children, parents often modify their own participation across leisure, social, and workforce activities. Few studies have examined the impact these modifications have on caregiver quality of life (QoL). The aim in the current study was to examine how parenting their autistic child/ren impacts parent's participation and QoL. METHODS: Twenty primary caregivers (29-48 years, all female) of autistic children (7-11 years) were interviewed online about their participation in leisure, community, and employment activities including the impact of COVID-19. RESULTS: Five themes with underlying subthemes were identified using reflexive thematic analysis. The themes were: (1) Reflecting on the important things in life, (2) Getting access to everything needed, (3) Barriers to participation in meaningful activities, (4) Facilitators of participation in meaningful activities, and (5) Participation through the COVID-19 pandemic. CONCLUSION: The findings highlight the importance of regular participation in meaningful activities for parents of autistic children and the support needed by them, particularly single parents, to achieve balance between meeting caring responsibilities and their own participation needs.

The Suicidal Ideation Attributes Scale-Modified (SIDAS-M): Development and preliminary validation of a new scale for the measurement of suicidal ideation in autistic adults.

LAY ABSTRACT: Autistic people may be at higher risk of suicidal behavior than people in the general population. Suicidal behavior may include thinking about suicide or attempting to end one's own life by suicide. It is important to identify autistic people who may be thinking about suicide. People who are at risk of suicidal behavior can be identified by asking questions about whether they have been thinking about suicide. A specially designed questionnaire, or screening instrument, can help someone ask the best questions to find out if someone has been thinking about suicide. This information can help to identify supports to be put in place to prevent suicidal behavior, such as a suicide attempt. However, autistic people may interpret questions differently than non-autistic people. It is important to use screening tools that have been designed with, and for autistic people. In this study, we examined the Suicidal Ideation Attributes Scale (SIDAS). The SIDAS is an existing tool that was developed to screen for suicidal thinking in the general population. We modified SIDAS for use with autistic adults. We involved autistic people in the process of modifying SIDAS. We called the modified instrument the SIDAS-M. The results of our study showed SIDAS-M may be useful for screening for suicidal thinking in autistic adults who do not have an intellectual disability.

Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study.

OBJECTIVES: Implementing support and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental conditions including autism. This study examined parents'/caregivers' experiences and perceptions about a digital developmental surveillance pathway for autism, the autism surveillance pathway (ASP), and usual care, the surveillance as usual (SaU) pathway, in the primary healthcare general practice setting. DESIGN: This qualitative study involves using a convenience selection process of the full sample of parents/caregivers that participated in the main programme, 'General Practice Surveillance for Autism', a cluster-randomised controlled trial study. All interviews were audio-recorded, transcribed and coded using NVivo V.12 software. An inductive thematic interpretive approach was adopted and data were analysed thematically. PARTICIPANTS: Twelve parents/caregivers of children with or without a developmental condition/autism (who participated in the main programme) in South Western Sydney and Melbourne were interviewed. SETTINGS: All interviews were completed over the phone. RESULTS: There were seven major themes and 20 subthemes that included positive experiences, such as pre-existing patient-doctor relationships and their perceptions on the importance of knowing and accessing early support/services. Barriers or challenges experienced while using the SaU pathway included long waiting periods, poor communication and lack of action plans, complexity associated with navigating the healthcare system and lack of understanding by general practitioners (GPs). Common suggestions for improvement included greater awareness/education for parents/carers and the availability of accessible resources on child development for parents/caregivers. CONCLUSION: The findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting. TRIAL REGISTRATION NUMBER: ANZCTR (ACTRN12619001200178).

The association between COVID-19, personal wellbeing, depression, and suicide risk factors in Australian autistic adults.

The COVID-19 pandemic has had a significant impact on the mental health and wellbeing of the world's population, with particularly negative effects on vulnerable populations, including autistic people. Although some consensus regarding specific impact on aspects of wellbeing and mental health in autism is starting to emerge, it is unclear whether the pandemic has increased suicide risk. The goals of this study were to examine (a) potential associations between COVID-19 impact and depression, personal wellbeing, and suicide risk factors in Australian autistic adults and (b) age and gender effects. The COVID-19 Impact Scale (CIS), Personal Wellbeing Index, Patient Health Questionnaire, and the Suicide Behavior Questionnaire, Revised (SBQ-R), were administered to 111 autistic adults aged 20 to 71 years during the second wave of the COVID-19 pandemic in Australia. COVID-19 impact showed small associations with poorer personal wellbeing (r = -0.224, p = 0.023, [-0.409, -0.016]) and higher depressive symptoms (r = 0.268, p = 0.006, [0.056, 0.445]) and was not associated with the SBQ-R suicide risk score (r = 0.081, p = 0.418, [-0.118, 0.264). No significant effects were identified for age. Although model results were similar for women and men, the strength of the associations between personal wellbeing and depression (z = -2.16, p = 0.015), and depression and SBQ-R suicide risk (z = 1.961, p = 0.025), were stronger in women than in men. Qualitative analysis of an open response question from the CIS suggested that the pandemic had both positive and negative impacts on participants. The COVID-19 pandemic has had a large impact on the mental health and wellbeing of the world's population, particularly vulnerable populations such as autistic people. It is not known if these impacts on mental health and wellbeing have increased suicide risk. Our findings suggest that the impact of the COVID-19 pandemic may be associated with poorer wellbeing and higher depression, but is not associated with suicide risk. Overall, autistic people reported both positive and negative impacts of the pandemic on their lives.

COVID-19 and autism research: Perspectives from around the globe: Reflections on the impact of COVID-19 on autism research in Australia

At the Olga Tennison Autism Research Centre in Australia, research grants have been especially affected by COVID-19 and certain studies have been made to stop data collection. The authors go onto write about how researchers are adjusting their studies during COVID-19 like transitioning to parent-mediated intervention. The pandemic requires scientists to be nimble, resilient, strategic and innovative which will ultimately expand their future contributions to the autism community. (PsycInfo Database Record (c) 2020 APA, all rights reserved)