Experiences of Performing Daily Activities in Middle-Aged and Older Autistic Adults: A Qualitative Study

This is the first study to investigate instrumental activities of daily living in older autistic adults. We conducted interviews with fifteen adults (mean age = 60.1, SD = 7.4, range = 50–73) from Australia with no intellectual disability. Analysis included both deductive and inductive steps, to categorise responses using the Occupational Performance Model Australia and identify themes across participants’ experiences. Strengths and challenges were unique to the individual, as were the methods they had developed to manage tasks. Challenges occurred mostly at the interaction between aspects of the environment (sensory, cognitive, social and cultural) and personal factors such as health conditions and sensory sensitivities. Enhanced person-environment fit is needed, as is a shift in wider sociocultural attitudes to enable comfort and autonomy in later life

Experiences of Performing Daily Activities in Middle-Aged and Older Autistic Adults: A Qualitative Study

AbstractThis is the first study to investigate instrumental activities of daily living in older autistic adults. We conducted interviews with fifteen adults (mean age = 60.1, SD = 7.4, range = 50–73) from Australia with no intellectual disability. Analysis included both deductive and inductive steps, to categorise responses using the Occupational Performance Model Australia and identify themes across participants’ experiences. Strengths and challenges were unique to the individual, as were the methods they had developed to manage tasks. Challenges occurred mostly at the interaction between aspects of the environment (sensory, cognitive, social and cultural) and personal factors such as health conditions and sensory sensitivities. Enhanced person-environment fit is needed, as is a shift in wider sociocultural attitudes to enable comfort and autonomy in later life.</jats:p

Participant experiences of a post-release electronic monitoring program for domestic violence in New South Wales, Australia

Electronic monitoring has been increasingly used internationally with recent implementation in Australia for those convicted of domestic violence offenses. It is timely and important to gain a better understanding of the physical, psychological, social, and offending-related experiences and impacts of electronic monitoring on this group to inform further implementation. This study describes the experiences of individuals who were subject to a post-release electronic monitoring program for domestic violence in the state of New South Wales, Australia. Semi-structured phone interviews were conducted with 16 men who had recently experienced electronic monitoring. Thematic analysis was used to investigate common themes across participants’ experiences. Demographic and basic quantitative health data were also collected. Five themes were identified: (a) confusion regarding program practices, (b) awareness and pressure of monitoring, (c) social exclusion effects, (d) felt and enacted stigmatization, and (e) “for them not for me.” The findings reveal participants were highly aware of their being monitored, with a mix of positive and negative responses to this cognizance. Being electronically monitored had several flow-on effects on participants’ lives, creating challenges in social spheres across work and personal life. Stigma, both felt and enacted, featured heavily in participants’ responses. Individual factors that may affect program adherence were also identified, including education level and intent to commit a crime. Further quantitative work will be useful for informing a more complete understanding of the relationship between program experiences and outcomes such as reoffending and post-release community integration

Autism in Later Life: What Is Known and What Is Needed?

Purpose of Review: Autism is a lifelong neurodevelopmental condition characterised by differences in social interaction and communication across multiple contexts, as well as restricted, repetitive patterns of behaviour or interests. As all adults age, they face an appreciable decline in health and functioning. For autistic adults, the challenges are twofold: they may face autism-specific effects of ageing as well as other non-specific, age-related effects experienced by the general population. This report summarises the available literature regarding older autistic adults over the age of 50, from 2010 to mid-2019. Recent Findings: Emerging evidence suggests that older autistic adults experience complex physical and mental health comorbidities. Studies that have included older adults report challenges such as underemployment, a lack of appropriate healthcare, and concerns for caring relationships as the adult ages. However, these studies have tended to be skewed towards younger and middle-aged adults. Summary: Overall, there is a notable lack of studies that focus on older autistic adults and on ageing-relevant topics, with a particular absence of the autistic voice in the research. Resultantly, there remains a gap in our knowledge regarding the specific circumstances and needs of autistic adults in older age. In moving forward, it will be important to fill this gap with inclusive research to guide the most relevant and effective work that improves outcomes for this population

“The Single Most Important Thing That Has Happened to Me in My Life”: Development of the Impact of Diagnosis Scale—Preliminary Revision

Background: Awareness and diagnosis of autism in adulthood is on the rise. Studies have considered the impact of receiving an autism diagnosis for parents of children on the spectrum, although only few primarily qualitative studies have considered the self-reported impact of autism diagnosis. The Impact of Diagnosis Scale (IODS) was initially developed with a focus on borderline personality disorder. Our aim was to develop a version suitable for autistic individuals. Methods: The research team and a group of autistic advisors revised the IODS items for suitability and accessibility to autistic participants. We gathered participant data for 92 autistic adolescents and adults from the Cooperative Research Centre for Living with Autism (Autism CRC) Study of Australian School Leavers with Autism (SASLA) and the Australian Longitudinal Study of Autism in Adulthood (ALSAA). We used iterated principal factors analysis to explore potential factors, and thematic analysis to explore responses to two open-ended items. Results: Factor analysis suggested three factors of ‘‘Service Access (SA),’’ ‘‘Being Understood (BU),’’ and ‘‘Self-Acceptance and Understanding (SU)’’ for the 12 items of the IODS–Preliminary Revision (IODS-PR). Cronbach’s alpha was good overall and acceptable for subdomains. Item mean scores suggest that although impact of autism diagnosis was generally perceived as positive for SU, scores were neutral in other domains. Qualitative analysis identified themes of Self-Understanding, Identity, and Acceptance, Supports and Services, Valence of Response, Relationships, and Camouflaging. Conclusions: The IODS-PR is the first scale to measure the self-reported experience of receiving an autism diagnosis. It showed good psychometrics and provides new insight into the experience of autism diagnosis. Qualitative analysis identified domains that remain unexplored and the potential for an expanded item set. A further revision of the tool will soon be available. It will provide critical information for clinicians and has potential applications for research and service evaluation

Loneliness in Adults on the Autism Spectrum

Background: Loneliness is associated with adverse psychological and physical outcomes. However, little is known about the factors contributing to loneliness in autistic adults. This study aimed to quantitatively compare levels and predictors of loneliness in autistic and nonautistic adults, and then contextualize these findings by thematically analyzing responses to open-ended questions on autistic adults’ socialization experiences. Methods: We obtained data from the Cooperative Research Centre for Living with Autism (Autism CRC) Australian Longitudinal Study of Adults with Autism (ALSAA). The sample comprised 220 autistic adults (age mean [M] = 41.9 years, standard deviation [SD] = 12.24) and 146 nonautistic adults (age M= 43.7 years, SD = 13.49). We measured loneliness with the University of California, Los Angeles (UCLA) loneliness scale (ULS-8). We compared the findings between these two groups of adults. Through regression models, we investigated associations between loneliness and demographics, autistic traits, social support, depression, anxiety, and self-efficacy. We adapted these determinants from De Jong-Gierveld’s model of loneliness. In addition, we conducted an inductive thematic analysis of autistic participants’ open-ended responses about their socialization. We used an inclusive approach utilizing an advisory panel of autistic adults in study design and interpretations. Results: Autistic adults scored significantly higher on the ULS-8 than nonautistic adults ( p < 0.001). The presence of autism contributed the greatest variance in the loneliness score (B = 8.11, 95% confidence interval [6.98–9.23], p < 0.001, R2 = 0.38). The autism quotient subdomains of social skills and dissatisfaction with social support were associated with greater loneliness in both autistic and nonautistic groups ( p < 0.05). The thematic analysis contextualized the interpretation of quantitative findings, specifically regarding perceived loneliness and difficulties with social interaction. Satisfaction and perceptions of socialization were widely variable and both of which were shaped by experiences. Environmental factors, noise in particular, as well as social communication difficulties and past negative experiences seemed to be the barriers to socialization. Conclusions: Autistic adults have reported higher levels of loneliness. Variables associated with loneliness in both groups were dissatisfaction with social support and the autism quotient subdomain of social skills. The subjectivity of perceived loneliness, views about socialization, and their implications for social support in autistic adults warrant further study

The use of everyday and assistive technology in the lives of older autistic adults.

LAY ABSTRACT: Technology has the potential to help people with various support needs live more autonomous lives. This includes autistic individuals. In this article, we look at how older autistic adults use technology in their daily lives. Past research examining technology use and autism has mainly focused on helping children to learn new skills. To date, very little research has been conducted looking at how to create and design technology for use by older autistic adults. This is concerning because older autistic adults will likely have supports needs that match or exceed those of similarly aged non-autistic individuals. In this article, we spoke to autistic adults over 50 years about their daily experiences and how they use technology. We identified some important ways that older autistic adults use technology in their daily lives, as well as a number of support needs and barriers to technology use. Based on the findings, we were able to provide some guidelines and recommendations for technology developers and service providers to assist with designing, creating and using technology with older autistic adults

Disengagement from mental health treatment and re-offending in those with psychosis: a multi-state model of linked data

Background and aims: Individuals with psychosis are over-represented in the criminal justice system and, as a group, are at elevated risk of re-offending. Recent studies have observed an association between increased contacts with mental health services and reduced re-offending, as well as reduced risk of re-offending in those who are ordered to mental health treatment rather than punitive sanctions. In furthering this work, this study examines the effect of disengagement from mental health treatment on probability of re-offence in offenders with psychosis over time. Methods: Data linkage was conducted with judicial, health and mortality datasets from New South Wales, Australia (2001–2015). The study population included 4960 offenders with psychosis who received non-custodial sentences and engaged with community-based mental health treatment. Risk factors for leaving treatment and/or reconviction were examined using multivariate cox regression. Further, a multi-state model was used to observe the probabilities associated with individuals moving between three states: conviction, disengagement from mental health treatment and subsequent re-conviction. Results: A threefold increase was observed in the risk of re-offending for those who disengaged from treatment compared to those who did not (aHR = 2.76, 95% CI 1.65–4.62, p < 0.001). The median time until re-offence was 195 days, with the majority (67%) being convicted within one year of leaving treatment. A higher risk of leaving treatment was found for those born outside of Australia, with substance-related psychosis, and a history of violent offence. Conclusions: The findings argue for an emphasis on continued engagement with mental health services following release for offenders with psychosis and identify subgroups within this population for whom concentrated efforts regarding treatment retention should be targeted