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1.
Aust J Rural Health ; 2024 Apr 04.
Article in English | MEDLINE | ID: mdl-38572866

ABSTRACT

INTRODUCTION: Children living in rural, regional and remote locations experience challenges to receiving services for mental illness and challenging behaviours. Additionally, there is a lack of clarity about the workforce characteristics to address the needs of this population. OBJECTIVE: To scope the literature on the rural, regional and remote child mental health and behavioural workforce and identify barriers and enabling mechanisms to mental health service provision. DESIGN: A scoping review utilising the Joanna Briggs Institute methodology. A database search was undertaken using Medline, CINAHL, PsycINFO, ProQuest and Scopus to identify papers published 2010-2023. Research articles reporting data on mental health workforce characteristics for children aged under 12 years, in rural, regional or remote locations were reviewed for inclusion. FINDINGS: Seven hundred and fifty-four papers were imported into Covidence with 22 studies being retained. Retained studies confirmed that providing services to meet the needs of children's mental health is an international challenge. DISCUSSION: The thematic analysis of the review findings highlighted four workforce strategies to potentially mitigate some of these challenges. These were: (1) The use of telehealth for clinical services and workforce upskilling; (2) Role shifting where non mental health professionals assumed mental health workforce roles; (3) Service structure strategies, and (4) Indigenous and rural cultural factors. CONCLUSION: A range of potential strategies exists to better meet the needs of children with mental health and behavioural issues. Adapting these to specific community contexts through co-design and production may enhance their efficacy.

2.
Autism Adulthood ; 5(4): 423-436, 2023 Dec 01.
Article in English | MEDLINE | ID: mdl-38116050

ABSTRACT

Background: Receiving an autism diagnosis in adulthood often leads to improved self-understanding and deeper self-reflection, which can have major impacts on people's well-being and sense of identity. However, autism diagnosis also exposes individuals to societal stigma, which may become internalized over time. This study aimed to explore relationships between psychological and service-related impacts of diagnosis and internalized stigma using mixed methods. Methods: One hundred forty-three autistic adults completed an online survey involving impact of diagnosis domains of Self-Understanding, Well-being, Clinician Support, and Service Access, internalized stigma, and open-ended questions on beliefs about autism diagnosis. Results: On average, participants reported mild levels of internalized stigma and positive impact of diagnosis in all domains except Service Access. Older age at diagnosis was positively associated with Clinician Support only. The path analysis model showed positive relationships between impact of diagnosis domains, with Self-Understanding having a positive effect on Well-being via lowered internalized stigma. We developed four themes of Continuity and Acceptance, Late Diagnosis as Regret and Freedom, Coming to Terms with Being Autistic, and Stigma Resistance from qualitative data. Conclusions: Self-understanding protects against the development of internalized autism stigma. Diagnosticians and service providers play an important role in improving self-understanding and well-being in autistic adults. More research is needed to understand the role of age at diagnosis and mechanisms behind positive identity development after autism diagnosis.


Why is this an important issue?: Receiving an autism diagnosis in adulthood can help people understand themselves better. This can help them feel better too. Autistic adults' experiences during diagnosis and their experience with support services after diagnosis might also affect how they think and feel about themselves. There are many negative beliefs about autism in society. Some autistic people might think more negatively about themselves because of these beliefs. What was the purpose of this study?: This study tries to understand relationships between the impact of autism diagnosis and negative beliefs about autism in autistic adults. We also wanted to know if age at diagnosis is related to these factors. What did the researcher do?: One hundred forty-five autistic adults filled in an online survey. We asked questions about the impact of autism diagnosis on four aspects: how they understand themselves, their well-being, experiences with the professional who gave the diagnosis, and support services after diagnosis. We also asked questions about autistic adults' negative beliefs about autism. We used the answers to these questions to test a model of how we think these factors might affect each other: good experiences with the professional who gave the diagnosis help with self-understanding and getting support services. Better self-understanding helps autistic adults think less negatively about autism. Better self-understanding, less negative thinking about autism, and better support services all help improve well-being after diagnosis.We asked autistic adults some general questions about the effect of autism diagnosis on their lives. We asked autistic adults whether they think being diagnosed at an older or younger age made a difference. We also asked autistic adults about negative beliefs that some autistic people might have about their autism. We then read these answers and made a list of the important and common ideas in people's answers. What were the results of the study?: In general, autism diagnosis improved autistic adults' self-understanding and well-being. Most autistic adults had good experiences with the diagnosing professional but did not have good support services after diagnosis. On average, autistic adults had a small amount of negative beliefs about autism. People diagnosed at older ages had better support from the health professional who diagnosed them. We did not find any other differences between people diagnosed at different ages. We successfully tested our model of relationships between self-understanding, well-being, experiences with the diagnosing professional, experience of support services, and negative beliefs about autism.Autistic adults said getting the diagnosis did not change who they are. It helped them understand and accept themselves. Some late-diagnosed autistic adults wished they were diagnosed earlier. Others said being diagnosed younger might make you think less of yourself because there was less autism acceptance in society at that time. Both early-diagnosed and late-diagnosed autistic adults said growing older helped them understand what it means to be autistic. Autistic adults also talked about autistic and non-autistic people's negative beliefs about autism. Some autistic adults said that negative beliefs are caused by society not being accepting enough, not because autism itself is bad. This thinking helps autistic adults think more positively about autism. What do these findings add to what was already known?: This is the first study to measure and develop a model of the relationships between impacts of diagnosis and negative beliefs about autism in autistic adults. What are potential weaknesses in this study?: Most people who did our survey were diagnosed as teens and adults. It was hard to measure the effects of age at autism diagnosis because we did not have enough participants diagnosed at young ages. The people who did our survey were mostly female, White, spoke English only, and did not have intellectual disability. This means that the people in our study are not a good representation of all autistic adults in Australia. The questions we used to measure negative beliefs about autism were originally made for people with mental illness. There might be negative beliefs specific to autism that we did not measure. How will these findings help autistic adults now or in the future?: Our findings tell professionals who diagnose or support autistic adults that it is important to help autistic adults understand what it means to be autistic in a positive way. This will help autistic adults form more positive beliefs about autism and live happier lives.

3.
Suicide Life Threat Behav ; 53(5): 725-738, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37526381

ABSTRACT

BACKGROUND: Australian university students are at risk of experiencing poor mental health, being vulnerable to self-harm and suicidal ideation. AIM: "Talk-to-Me" is a suicide ideation prevention Massive open online course (MOOC) previously showing it can support Western Australian university students' knowledge of identifying and responding to suicide ideation in themselves and others. METHODS: A multi-site one-group pre-test/post-test design with a 12-week follow-up explored the efficacy of "Talk-to-Me" for university students Australia-wide, evaluating the influence of COVID-19 and location. Overall, 217 students (55% female; mage = 24.93 years [18, 60]) enrolled in this study from 2020 to 2021. Participants' responses to suicidal statements, mental health literacy, generalized self-efficacy, help-seeking behavior, and overall utility of the program were collected at baseline, post-MOOC (10 weeks from baseline) and 12-week follow-up. The effect of time and location interaction was explored using a random-effects regression model. RESULTS: Findings indicated significant improvement in participants' knowledge of positive mental health support strategies (ES = 0.42, p < 0.001) and recognizing appropriate responses to suicidal statements (ES = 0.37, p < 0.001) at 10-weeks, with further improvement at 12 weeks follow-up (ES = 0.47 and 0.46, p < 0.001). Students reported higher generalized self-efficacy at the 12-week follow-up compared to baseline (ES = 0.19, p = 0.03) and an increased tendency to seek professional help for mental health issues (ES = 0.22, p = 0.02). CONCLUSION: These findings provide preliminary evidence of the efficacy of the "Talk-to-Me" program in supporting university students across Australia to increase their suicide-related knowledge and skills, general self-efficacy, and overall mental fitness.

4.
J Autism Dev Disord ; 53(5): 2037-2049, 2023 May.
Article in English | MEDLINE | ID: mdl-35217945

ABSTRACT

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.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Middle Aged , Adult , Humans , Aged , Activities of Daily Living , Qualitative Research , Australia
5.
J Autism Dev Disord ; 2022 Dec 09.
Article in English | MEDLINE | ID: mdl-36484961

ABSTRACT

Adulthood autism diagnosis has become increasingly common, but little is known about post-diagnosis support experiences and needs. We interviewed 19 autistic adults and 4 support persons on experiences of formal and informal post-diagnosis support. Reflexive thematic analysis was used to identify themes. Participants reported difficulties accessing suitable formal support, especially regarding education and employment. Informal support was helpful but created challenges in the relationships between autistic adults and support persons. For autistic adults, support from autistic peers fostered belonging and self-acceptance. We also identified complex interactions between adults' post-diagnosis identity development and support experiences as they resolved the dilemma between self-acceptance and a desire to change. Findings have important implications for services working with autistic adults and their families.

6.
J Autism Dev Disord ; 2022 Nov 21.
Article in English | MEDLINE | ID: mdl-36409392

ABSTRACT

This study aimed to explore experiences of support after adulthood autism diagnosis. In this mixed-methods survey study of 137 adults, we found that most common formal supports received were counselling and mental health. Common unmet support needs were sensory sensitivities and accessing other services. Cost, lack of information, and fear of not being taken seriously were common barriers. Informal support was mainly helpful for self-understanding and emotions toward diagnosis. Qualitative findings included difficulties accessing formal support, need for practical quality-of-life supports and support from autistic peers and online communities. Based on these findings, future development of supportive interventions should address unmet needs, improve access, and explore the integration of autistic peer support and online support into formal services.

7.
Aust Occup Ther J ; 69(4): 456-474, 2022 08.
Article in English | MEDLINE | ID: mdl-35488176

ABSTRACT

INTRODUCTION: Daily living skills (DLS) are essential for an increased quality of life and autonomous living. DLS are a focus of occupational therapy practice; however, there has been no identified review of DLS acquisition in autistic adolescents or adults. A scoping review was undertaken of which the objective was to evaluate and synthesise the extent, range, and nature of research activity, and to identify research gaps in the existing literature as they relate to DLS acquisition and autistic adolescents and adults. METHODS: A structured search of the literature was conducted. Studies published in English between 2011 and 2021 that included a focus on the acquisition of DLS in autistic adolescents and young adults were included. The titles and abstracts of 103 records were screened, and the full text of 53 records was reviewed. These reference lists were hand searched. Following this process, 25 papers were found to meet the inclusion criteria. RESULTS: Findings indicate inconsistencies throughout the literature, with a lack of consensus on best practice methods, mediums, and/or tools to support optimal outcomes in terms of DLS acquisition for the autistic population. Themes related to (1) Generalisation of Skills Across Contexts, (2) Skill Maintenance, (3) Technology as a Teaching Method, (4) Participant and Family Perspectives, and (5) The Balance of Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL) focus in research were extracted from the reviewed literature. There is a strong consensus in the findings of the identified papers that autistic adolescents and young adults experience poorer outcomes in terms of DLS acquisition than non-autistic peers, and peers with other developmental or intellectual disabilities. CONCLUSION: Future research is needed to fill these identified gaps and provide a clearer understanding on interventions to support optimal outcomes for autistic individuals.


Subject(s)
Autistic Disorder , Intellectual Disability , Occupational Therapy , Activities of Daily Living , Adolescent , Humans , Quality of Life , Young Adult
8.
J Autism Dev Disord ; 52(7): 2984-2996, 2022 Jul.
Article in English | MEDLINE | ID: mdl-34241747

ABSTRACT

Pathways to diagnosis in adulthood are poorly understood. Even less is known about undiagnosed adults who believe they may be autistic. This mixed-methods online survey examined adults' journeys from initial concern to receiving the diagnosis. Quantitative findings showed the diagnostic process to be highly heterogeneous. Qualitative analysis identified desires for explanation and support as motives for seeking diagnosis. Cost and fear of not being taken seriously were major barriers, echoed by qualitative responses that described the process as confusing, expensive and time-consuming. While most participants were satisfied with the diagnosis, their emotional reactions were complex. Findings support the need for thoroughly implementing national guidelines, and for improved knowledge and communication in mainstream clinicians encountering clients with possible autism characteristics.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adult , Australia , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/psychology , Autistic Disorder/diagnosis , Autistic Disorder/psychology , Communication , Humans , Surveys and Questionnaires
9.
Autism ; 26(6): 1550-1562, 2022 08.
Article in English | MEDLINE | ID: mdl-34841926

ABSTRACT

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.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Self-Help Devices , Adult , Aged , Child , Humans
10.
Autism Res ; 14(12): 2677-2687, 2021 12.
Article in English | MEDLINE | ID: mdl-34529351

ABSTRACT

Autism diagnosis in adulthood has become increasingly common due to a range of factors including changes in awareness, diagnostic criteria, and professional practices. Past research identified a range of demographic and autism-related factors associated with autism diagnosis age in children. However, it is unclear whether these apply to autistic adults. This study aimed to examine predictors of autism diagnosis age in adults while controlling for current age and autistic traits. We used a cross-sectional sample of 657 adults aged 15-80 from three self and carer-report studies: the Australian Longitudinal Study of Autism in Adulthood (ALSAA), Study of Australian School-Leavers with Autism (SASLA) and Pathways, Predictors and Impact of Receiving an Autism Spectrum Diagnosis in Adulthood (Pathways). Using hierarchical multiplicative heteroscedastic regression, we found that older current age and higher self-reported autistic traits predicted older diagnosis age, and that female gender, lack of intellectual disability, language other than English, family history of autism, lifetime depression, and no obsessive-compulsive disorder predicted older diagnosis age beyond current age and autistic traits. The paradoxical relationship between high autistic traits and older diagnosis age requires further investigation. Based on these findings, we recommended strategies to improve autism recognition in women and people from non-English-speaking backgrounds. Future studies could extend the findings by examining the effects of childhood and adulthood socioeconomic status on adult diagnosis age. LAY SUMMARY: We studied the relationship between age at autism diagnosis and other characteristics in adults. We found that both older current age and higher autistic traits, female gender, language other than English, family history of autism, and history of depression were related to older age at diagnosis, while intellectual disability and history of obsessive-compulsive disorder were related to younger age at diagnosis. Our findings suggest more work is needed to help recognize autism in women and people from non-English-speaking backgrounds.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adult , Aged , Australia/epidemiology , Autistic Disorder/diagnosis , Autistic Disorder/epidemiology , Child , Cross-Sectional Studies , Female , Humans , Longitudinal Studies
11.
Autism Res ; 14(10): 2061-2077, 2021 10.
Article in English | MEDLINE | ID: mdl-34374491

ABSTRACT

Autistic adults experience a high number of job changes, reduced working hours, minimal workplace supports, and overrepresentation in entry-level and low paid positions. This study adds to the existing evidence base to guide clinical decisions and interventions for this population. This study utilized baseline data collected between 2015 and 2017 from the Autism CRC's Australian Longitudinal Study of Autism in Adulthood. The aim was to describe the employment profiles and explore factors related to employment for Australian autistic adults aged 25 and older (N = 149). Comparisons between participants and the Australian workforce were made using Australian Bureau of Statistics (ABS) data. Two logistic regression models were conducted to explore the association between underemployment and underutilisation with personal and environmental factors. In comparison to the Australian workforce, autistic adults were more likely to work part-time, work reduced hours and be employed at skill levels lower than their qualifications warranted. Logistic regressions reported that more autistic traits, more social supports and having workplace adjustments implemented were significantly associated with a higher odds of autistic adults being appropriately employed and/or utilized in the workforce. Results suggest that interventions implementing appropriate workplace adjustments, a supportive workplace environment, and adequate social supports may improve employment outcomes for autistic adults. All employees may benefit from workplace resources targeted toward fostering an inclusive workplace environment. LAY SUMMARY: This study aimed to describe the employment profiles and explore factors related to employment for Australian autistic adults. We compared this with the Australian workforce using data from the Australian Bureau of Statistics. Autistic adults with more autistic traits and more social and workplace supports were more likely to be employed and have jobs that were better suited to them. Autistic adults might have better employment outcomes if they have the appropriate workplace adjustments, a supportive workplace and adequate social supports.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adult , Australia , Autistic Disorder/epidemiology , Employment , Humans , Longitudinal Studies
12.
Am J Occup Ther ; 74(4): 7404205010p1-7404205010p13, 2020.
Article in English | MEDLINE | ID: mdl-32602440

ABSTRACT

IMPORTANCE: Patients with cancer frequently experience difficulties with everyday activities. This scoping review explores occupational therapy group interventions in oncology, an area relevant to occupational therapy practitioners, but one that has limited evidence. OBJECTIVE: This scoping review examines the association between occupational therapy-based oncology groups and improved functional activity of daily living outcomes for adults with cancer. It poses the following research question: Are occupational therapy groups associated with improved functional outcomes for adults with cancer? DATA SOURCES: Searches of MEDLINE, CINAHL, AMED, OTseeker, Health Source: Nursing/Academic Edition, and OTDBase were completed for peer-reviewed articles published from 1997 to 2018. STUDY SELECTION AND DATA COLLECTION: Inclusion criteria were articles published in English and occupational therapy-based groups for adults with cancer. FINDINGS: Eight articles matched the inclusion criteria. The articles reviewed were 2 randomized controlled trials, 1 case study, 1 descriptive exploratory research study, 1 mixed-methods study, 2 pretest-posttest studies, and 1 longitudinal prospective comparative study. CONCLUSIONS AND RELEVANCE: Occupational therapy groups led to a significant increase in occupational performance and satisfaction, an improvement in functioning, and a decrease in fatigue. Engagement in important roles and occupations and sharing the experience with others were also highly valued. This review provides support for the implementation of group-based occupational therapy interventions in oncology. Further research is required in this area, particularly in the inpatient setting with men included in the sample. WHAT THIS ARTICLE ADDS: This scoping review demonstrates the benefits of group-based occupational therapy interventions for adult patients with cancer.


Subject(s)
Occupational Therapy , Psychotherapy, Group , Adult , Humans , Male , Occupations , Prospective Studies
13.
Autism ; 24(6): 1311-1327, 2020 08.
Article in English | MEDLINE | ID: mdl-32106698

ABSTRACT

LAY ABSTRACT: More adults are getting assessed for possible autism. Here, we give an overview on what is already known about autism diagnosis in adulthood and find areas that need more research. We divided results from the studies we found into six topics of (1) rates of autism in different groups; (2) the process of getting an autism diagnosis in adulthood; (3) gender; (4) personality traits, abilities and behaviours of diagnosed adults; (5) mental and physical health conditions that occur together with autism; and (6) how adults think and feel about being assessed and diagnosed. We found that adults often have strong emotions after being diagnosed, the process of getting a diagnosis can be unclear and different for everyone, and not many support services are available for adults. More research on diagnosing adults with intellectual disability, differences between early and late-diagnosed adults, and support after diagnosis would be useful.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Intellectual Disability , Adult , Autistic Disorder/diagnosis , Humans
14.
J Autism Dev Disord ; 50(7): 2326-2335, 2020 Jul.
Article in English | MEDLINE | ID: mdl-29721743

ABSTRACT

There is a gap in our knowledge of aging with autism. The present study examined the applicability of the popular gerontology concept of "aging well" to autistic adults. Using survey data, a model of "aging well" was operationalised and applied to 92 autistic adults and 60 controls. A very small proportion (3.3%) of autistic adults were found to be aging well. Significantly less autistic adults were "maintaining physical and cognitive functioning" and "actively engaging with life" in comparison to controls. Whilst important differences in health and functioning status were found, the current dominant model of "aging well" is limited for examining autistic individuals. Suggested adjustments include development of a broader, more flexible and strengths -based model.


Subject(s)
Aging/physiology , Autistic Disorder/diagnosis , Geriatric Assessment/methods , Healthy Aging , Aged , Aging/psychology , Autistic Disorder/physiopathology , Cognition , Female , Humans , Male , Middle Aged
16.
BMJ Open ; 9(12): e030798, 2019 12 04.
Article in English | MEDLINE | ID: mdl-31806608

ABSTRACT

​PURPOSE: There is a significant knowledge gap regarding the lives of adults on the autism spectrum. Some literature suggests significant health and mental health inequalities for autistic adults, yet there is a lack of comprehensive longitudinal studies exploring risk factors. Further, most research does not include the perspective of autistic adults in its conduct or design. Here, we describe the baseline characteristics and inclusive research approach of a nationwide longitudinal study. ​PARTICIPANTS: The Autism Cooperative Research Centre for Living with Autism's Australian Longitudinal Study of Adults with Autism (ALSAA) is a questionnaire-based longitudinal study of autistic adults (25+ years old) with follow-up at 2-year intervals. Autistic advisors were involved in each stage of research apart from data analysis. Three questionnaires were developed: self-report, informant report (ie, proxy report) and carers (ie, carer experiences and characteristics). ​FINDINGS TO DATE: An inclusive research protocol was developed and agreed with autistic advisors. Baseline data were collected from 295 autistic adults (M=41.8 years, SD=12.0) including 42 informant responses, 146 comparison participants and 102 carers. The majority of autistic participants (90%) had been diagnosed in adulthood (M=35.3 years, SD=15.1). When compared with controls, autistic adults scored higher on self-report measures of current depression and anxiety. Participant comments informed ongoing data gathering. Participants commented on questionnaire length, difficulty with literal interpretation of forced response items and expressed gratitude for research in this area. ​FUTURE PLANS: A large comprehensive dataset relating to autistic adults and their carers has been gathered, creating a good platform for longitudinal follow-up repeat surveys and collaborative research. Several outputs are in development, with focus on health service barriers and usage, caregivers, impact of diagnosis in adulthood, further scale validations, longitudinal analyses of loneliness, suicidal ideation, mental illness risk factors and other areas. Baseline data confirm poorer mental health of autistic adults. The ALSAA demonstrates a working approach to inclusive research.


Subject(s)
Autistic Disorder , Adult , Aged , Australia , Autistic Disorder/diagnosis , Autistic Disorder/psychology , Female , Humans , Longitudinal Studies , Male , Middle Aged , Prospective Studies , Surveys and Questionnaires
17.
Autism Res ; 12(5): 806-815, 2019 05.
Article in English | MEDLINE | ID: mdl-30802364

ABSTRACT

Focused investigations regarding mortality rates, risk factors, and cause of death in autistic populations remain scarce. The present study used large linked datasets spanning 2001-2015 to report the rates and risk factors for mortality and cause of death in individuals on the autism spectrum (n = 35,929 age range 5-64) with and without concurrent intellectual disability (ID) in New South Wales, Australia. Mortality rates for those on the autism spectrum were 2.06 times that of the general population. Concurrent ID, epilepsy, mental health conditions, and chronic physical health conditions were associated with a higher risk of death for those on the spectrum, whereas demographic variables such as gender and socioeconomic status were not. A differing profile of top causes of death was found for autistic individuals relative to the general population, with "nervous system and sense disorders" and "injury and poisoning" being the top-ranked causes for those on the spectrum. The findings alert the need for health promotion and management of concurrent physical and mental health conditions for those on the autism spectrum. There is also a need for better identification, diagnosis, and documentation of older adults on the autism spectrum. Autism Research 2019, 12: 806-815. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Rates of death are higher for autistic individuals compared to the general population. There is higher risk of death for autistic individuals who have additional mental and physical health conditions. The leading causes of death for autistic individuals with and without ID are "nervous system and sense disorders", which includes epilepsy and "injury and poisoning", respectively. To minimize risk of death, it is important to manage the mental and physical health individuals on the autism spectrum and to better understand the circumstances surrounding preventable deaths for this population.


Subject(s)
Autism Spectrum Disorder/mortality , Adolescent , Adult , Age Distribution , Australia/epidemiology , Cause of Death , Child , Child, Preschool , Chronic Disease , Cohort Studies , Female , Humans , Male , Middle Aged , Risk Factors , Young Adult
18.
Autism ; 23(4): 993-1004, 2019 05.
Article in English | MEDLINE | ID: mdl-30132680

ABSTRACT

Leisure participation is important for well-being and has been attributed to improved quality of life for autistic individuals. Rigorous studies exploring the leisure participation of autistic adults are sparse. This study aimed to compare the type of leisure activity and frequency of participation between autistic adults and neurotypical adults as well as compare and identify factors associated with their leisure satisfaction. Data for 145 autistic and 104 neurotypical adults were obtained from time point one of the Australian Longitudinal Study of Adults with Autism. The primary outcome measure used was the Leisure Satisfaction Scale. Autistic adults were less satisfied with their leisure overall (mean = 3.29, standard deviation = 0.75) compared with neurotypical adults (mean = 3.69, standard deviation = 0.55). Multiple linear regression revealed being younger and reporting less depressive symptoms were significantly associated with higher leisure satisfaction in autistic but not neurotypical adults. Engagement in solitary leisure activities was comparable across participants, but socialising in person was predominated by neurotypical adults. Leisure activity preferences of autistic adults' and the frequency of their leisure participation are important factors for clinicians to understand when working with this population and tailoring well-being interventions.


Subject(s)
Autism Spectrum Disorder , Leisure Activities , Personal Satisfaction , Adult , Aged , Aged, 80 and over , Anxiety , Asperger Syndrome , Autistic Disorder , Case-Control Studies , Female , Humans , Male , Middle Aged , Patient Health Questionnaire
19.
Autism Adulthood ; 1(3): 182-193, 2019 Sep 01.
Article in English | MEDLINE | ID: mdl-36601420

ABSTRACT

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, R 2 = 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.

20.
BJPsych Open ; 4(6): 461-466, 2018 Nov.
Article in English | MEDLINE | ID: mdl-30450225

ABSTRACT

BACKGROUND: Children and adolescents with autism spectrum disorder (ASD) are a highly medicated group. Few studies have examined the neuropsychiatric profile and patterns of psychotropic medication use among adults with ASD. AIMS: To describe and compare the neuropsychiatric profile and psychotropic medication use in a cohort of adults with ASD and non-autistic controls. METHOD: Baseline data from a survey-based, longitudinal study of adults with ASD in Australia. Participants were 188 adults with ASD and 115 controls aged 25-80 years. RESULTS: ASD was associated with increased odds of psychotropic medication use even when controlling for the presence of any neurological or psychiatric disorder. There were no corresponding indications for 14.4% of psychotropic medications prescribed to adults with ASD. CONCLUSIONS: This study found substantial psychotropic prescribing for adults with ASD. Patterns of psychotropic medication use may reflect prescribing for behavioural indications despite limited evidence to support this practice. DECLARATION OF INTEREST: None.

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