Measuring and validating autistic burnout.

Researchers have begun to explore the characteristics and risk factors for autistic burnout, but assessment tools are lacking. Our study comprehensively examined and compared the psychometric properties of the unpublished 27-item AASPIRE Autistic Burnout Measure (ABM), and personal and work scales of the Copenhagen Burnout Inventory (CBI) to evaluate their efficacy as screening measures for autistic burnout, with a group of 238 autistic adults. Exploratory factor analyses (EFA) revealed a 4-factor structure for the ABM and a 2-factor structure for the CBI personal scale (CBI-P). Factorial validity and dimensionality were examined with four exploratory models which indicated a unidimensional structure for the ABM with an overarching 'Autistic Burnout' construct, and multidimensional CBI-P structure comprising two subscales and overarching 'Personal Burnout' construct. Other reliability and validity indicators included Spearman correlations, analysis of variance, receiver operating characteristics, sensitivity, specificity, and intra-class correlations (ICC). The ABM and CBI-P were strongly correlated with depression, anxiety, stress, and fatigue. Unexpectedly, correlations between the burnout measures and camouflaging, and wellbeing measures were moderate. Potential overlap between burnout and depression and fatigue was examined through EFA, which supported convergent validity of the ABM and depression measure, while correlations and ICC analyses revealed mixed results. We concluded that the ABM and the CBI-P Emotional Exhaustion subscale were valid preliminary screening tools for autistic burnout. Testing with larger and more diverse autistic samples is required to further examine the psychometric properties of the ABM, and to understand the relationships between autistic burnout and depression, and masking.

Stress and well-being in autistic adults: Exploring the moderating role of coping.

The wider stress literature points to negative associations between stress and well-being. Similarly, the use of engagement coping strategies and disengagement coping strategies in the face of stress are related to improved and reduced well-being respectively. However, in the autistic population stress and coping research is limited to date, and the extent to which coping may moderate the relationship between stress and well-being is not known. Using data from an Australian online study, we explored the potential moderating (i.e. buffering or exacerbating) role of coping in the relationship between stress and well-being in a sample of autistic adults (N = 86). Our findings indicated that increased stress was associated with lower well-being. Further, moderation analyses showed that while both engagement coping (e.g. problem solving, positive appraisal) and disengagement coping (e.g., self-distraction, being in denial) strategies had significant positive and negative direct effects on well-being respectively; engagement coping also moderated the relationship between stress and well-being, buffering the impact of stress on well-being. Our results illustrate the different underlying mechanisms by which coping strategies may be associated with stress and well-being. They also highlight the potential protective role of engagement coping strategies, which can be incorporated into the promotion and maintenance of well-being in autistic adults.

Examining subjective understandings of autistic burnout using Q methodology: A study protocol.

BACKGROUND: Early research indicates that autistic burnout is a chronic, debilitating condition experienced by many autistic people across the lifespan that can have severe consequences for their mental health, wellbeing, and quality of life. To date, studies have focused on the lived experiences of autistic adults, and findings suggest that a lack of support, understanding, and acceptance by others can contribute to the risk of autistic burnout. The study outlined in this protocol will investigate how autistic people with and without experience of autistic burnout, their families, friends, healthcare professionals and non-autistic people understand the construct of autistic burnout to identify commonalities and gaps in knowledge. STUDY AND DESIGN: Q methodology will be used to investigate participants' subjective understandings of autistic burnout. Q methodology is a mixed-methods design that is well-suited to exploratory research and can elucidate a holistic and comprehensive representation of multiple perspectives about a topic. Participants will complete a card sorting activity to rank how strongly they agree or disagree with a set of statements about autistic burnout and participate in a semi-structured interview to discuss their responses. A first-order factor analysis will be conducted for each participant group, followed by second-order factor analysis to compare the groups' viewpoints. The interview data will provide additional insights into the factors. CONCLUSION: Q methodology has not previously been used to examine autistic and non-autistic people's perspectives about autistic burnout. Projected study outcomes include enhanced understanding of the characteristics, risks, and protective factors of autistic burnout. The findings will have practical implications for improving detection of autistic burnout and identifying strategies to support autistic adults with prevention and recovery. The results may also inform the development of a screening protocol and identify potential avenues for future research.

Brief Report: Longitudinal Role of Coping Strategies on Mental Health Outcomes in Autistic Youth and Adults.

The stress literature suggests that coping strategies are implicated in mental health outcomes. However, the longitudinal relationship between coping strategies and mental health in the autistic adult population has not yet been examined. This 2-year longitudinal study examined the predictive role of both baseline and change in coping strategy use over time (i.e., an increase or decrease) on anxiety, depression, and well-being after 2-years in 87 autistic adults aged 16 to 80 years. Controlling for baseline mental health, both baseline and increase in disengagement coping strategies (e.g., denial, self-blame) predicted higher anxiety and depression, and lower well-being, while an increase in engagement coping strategies (e.g., problem solving, acceptance) predicted higher well-being. These findings extend the current coping literature in autistic adults, offering insight into mental health support and intervention options.

The impact of sleep quality, fatigue and social well-being on depressive symptomatology in autistic older adolescents and young adults.

Depression and poor sleep quality commonly co-occur with autism, and depression has been associated with loneliness and reduced social support. In non-autistic samples, poor sleep quality and daytime fatigue also contribute to depression. However, the contribution of sleep quality and fatigue to depressive symptoms, and how they interact with social factors to influence depression in autism remain unexplored. Our aim was to examine these relationships in 114 young autistic adults aged 15-25 years (57% male) from the SASLA online, longitudinal study (baseline and 2-year follow-up). Hierarchical multiple regression models examined the association between social well-being (social integration and social contribution; T1), sleep quality (T1, T2), and fatigue (T1, T2) on depression (T1, T2). Two mediation models were conducted on T1 data predicting depression from sleep quality though fatigue and sleep quality through social well-being. Depression and fatigue scores did not change over 2 years, but sleep quality worsened. The T1 regression model was significant (R2 = 36%) with fatigue and social contribution individually predicting depression symptomatology. The longitudinal regression model was also significant (adjusted R2 = 57%) with social contribution (T1) as the only significant predictor of depression (T2). Fatigue trended towards mediating the sleep quality-depression relationship, while social well-being was a significant partial mediator of this relationship. Results highlight that sleep quality, fatigue, and social well-being contribute to depression among young autistic adults. Interestingly, fatigue and social well-being were independently associated with depression. Thus, addressing sleep quality and associated fatigue, and social well-being is important when treating depression in autistic individuals.

ACT-i, an insomnia intervention for autistic adults: a pilot study.

BACKGROUND: Insomnia and disturbed sleep are more common in autistic adults compared with non-autistic adults, contributing to significant social, psychological and health burdens. However, sleep intervention research for autistic adults is lacking. AIMS: The aim of the study was to implement an acceptance and commitment therapy group insomnia intervention (ACT-i) tailored for autistic adults to examine its impact on insomnia and co-occurring mental health symptoms. METHOD: Eight individuals (6 male, 2 female) aged between 18 and 70 years, with a clinical diagnosis of autism spectrum disorder, and scores ranging from 9 to 26 on the Insomnia Severity Index (ISI) participated in the trial. Participants were assigned to one of two intervention groups (4 per group) within a multiple baseline over time design for group. Participants completed questionnaires pre-intervention, post-intervention, and at 2-month follow-up, actigraphy 1 week prior to intervention and 1 week post-intervention, and a daily sleep diary from baseline to 1 week post-intervention, and 1 week at follow-up. RESULTS: At a group level there were significant improvements in ISI (λ2=10.17, p=.006) and HADS-A (anxiety) (λ2=8.40, p=.015) scores across the three time points. Clinically reliable improvement occurred for ISI scores (n=5) and HADS-A scores (n=4) following intervention. Client satisfaction indicated that ACT-i was an acceptable intervention to the participants (median 4 out of 5). CONCLUSIONS: This pilot study with eight autistic adults indicates that ACT-i is both an efficacious and acceptable intervention for reducing self-reported insomnia and anxiety symptoms in autistic adults.

Brief Report: Discrete Effortful Control Skills Moderate Relations Between Childhood Behavioural Inhibition and Mental Health Difficulties in Autistic Youth.

Studies of the general population suggest that the risk for mental health difficulties conferred by dispositional behavioural inhibition (BI) may be modified by self-regulation; however, this possibility has not been explored in the context of autism. This study investigated the moderating effects of attentional-, activation-, and inhibitory control on the relationship between childhood BI and anxiety and depression among 47 autistic youths (55% male, Mage = 19.09 years, SD = 2.23). Childhood BI was associated with anxiety at low but not high levels of attentional- and activation control, and depression at low but not high levels of attentional control. However, there were no moderating effects of inhibitory control. These preliminary findings are partially consistent with those from the general population and point to avenues for future work.

The Efficacy of Disability Employment Service (DES) Providers Working with Autistic Clients.

The efficacy of the Australian Disability Employment Services (DES) for autistic jobseekers has not been examined and is currently undergoing Government reform. To help inform the new DES strategy, we sought the views of: 24 autistic individuals; seven family members of autistic individuals, and; 46 DES employees. Data were collected using surveys and interviews. Data were analysed using Mann Whitney tests plus deductive thematic analysis based on Nicholas and colleagues' ecosystems model. Participants highlighted a need to adapt existing policies to enhance flexibility of the DES model. There was participant consensus that DES staff require specific education and training to meet the needs of autistic people. Suggestions to inform the new model of DES for autistic people are made.

Coping-resilience profiles and experiences of stress in autistic adults.

Emerging studies allude to high stress in autistic adults. Considering the detrimental impact of stress on health outcomes, examining individual resources which may influence the extent to which stress is experienced (e.g., coping and resilience) is vital. Using a person-focused approach, this study aimed to identify coping-resilience profiles, and examine their relations to general perceived stress and daily hassles in a sample of autistic adults (N = 86; aged 19-74 years). Cluster analysis identified four coping-resilience profiles (i.e., high cope/ low resilience, low cope/ high resilience, engage cope/ high resilience, and disengage cope/ low resilience). The high cope/ low resilience and disengage cope/ low resilience groups had significantly higher general perceived stress than the remaining groups. No significant group differences were noted in relation to daily hassles. Jointly addressing coping and resilience may be beneficial on the perceived stress experienced in autistic adults. The use of coping-resilience profiles may also allow for the personalization of stress management and support options in the autistic adult population.

A conceptual model of risk and protective factors for autistic burnout.

Early qualitative research indicates that autistic burnout is commonly experienced by autistic people and is associated with significant, negative consequences for their mental health, wellbeing, and quality of life, including suicidality. Findings to date suggest that factors associated with being autistic and the widespread lack of autism awareness and acceptance within society contribute to the onset and recurrence of autistic burnout. Based on autistic adults' descriptions of their lived experiences, a Conceptual Model of Autistic Burnout (CMAB) is proposed, which describes a series of hypothesized relationships between identified risk and protective factors that may contribute to, or buffer against, autistic burnout. The theoretical framework for the CMAB is based on the Social-Relational model of disability and neurodiversity paradigm, and the Job Demands-Resources model of burnout, and Conservation of Resources theory. The CMAB offers a holistic perspective for understanding individual, social, and environmental factors that can influence autistic burnout via various direct and indirect pathways. Autistic burnout research is in its infancy and the CMAB provides a foundation for future investigations about this condition. LAY SUMMARY: Although many autistic people describe experiencing autistic burnout, there has been little research on this topic. Based on descriptions of autistic peoples' lived experiences, we developed a conceptual model to explore how various risk and protective factors may interact to contribute to, or prevent, autistic burnout.

Associations between coping strategies and mental health outcomes in autistic adults.

Compared to the general population, mental health difficulties are commonly reported in autistic adults. However, the ways in which coping strategies are associated with mental health and well-being in this population remain unknown. Further, we do not know if, and if so, how these associations might differ to that of non-autistic adults. In this study, we hypothesized that in both our autistic (N = 255) and non-autistic (N = 165) adult samples, disengagement coping strategies (e.g., denial) would relate to poorer mental health and well-being, while engagement coping strategies (e.g., problem solving) would relate to better mental health and well-being. Regression analyses revealed that higher use of disengagement coping strategies was significantly associated with higher levels of anxiety and depression, and lower levels of well-being in both samples. In contrast, increased use of engagement coping strategies was associated with better well-being, but only in the autistic sample. Our results contribute to the characterization of negative and positive mental health outcomes in autistic adults from a coping perspective, with potential to offer novel information regarding coping strategies to consider when addressing support options for mental health difficulties in the autistic adult population. LAY SUMMARY: Mental health conditions (such as anxiety and depression) and poor well-being are commonly reported in autistic adults. Research suggests that how one copes with stress is associated with one's mental health and well-being. However, we have little information about how coping strategies relate to the mental health of autistic adults, and whether this might be different in non-autistic adults. In this study, we examined the relationship between coping strategies and mental health in a large group of autistic individuals aged 15-80 years. We then compared this with similar aged non-autistic individuals. We found that in both the autistic and non-autistic individuals, using more disengagement coping strategies (such as being in denial, blaming oneself) was related to poorer mental health and well-being. Additionally, using more engagement coping strategies (such as problem solving, acceptance) was related to better mental health and well-being, but only in the autistic individuals. These results can help inform support services, as they highlight the coping strategies that may need to be focused on (i.e., developing engagement coping strategies and reducing disengagement coping strategies) in order to better support the mental health of autistic individuals.

Autistic Adults' Experiences of Diagnosis Disclosure.

As autism is an invisible and often stigmatised condition, disclosing the diagnosis may lead to both support and/or discrimination. This mixed-methods questionnaire study examined autistic adults' experiences of disclosure in various contexts. The sample consisted of 393 participants aged 17-83 years from two longitudinal surveys. Almost all participants disclosed their diagnosis to someone, most commonly to friends. A significant minority of participants studying and/or working at the time had not disclosed to their education provider/employer. Content analysis of open-ended responses showed participants desired to gain understanding and support from disclosure but feared prejudice. While some received support, others encountered dismissiveness and misunderstanding. Findings highlight the need to improve autism understanding and reduce stigma within and beyond educational and employment contexts.

What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms.

Background: Compared with adults in the general population, autistic adults are more likely to experience poor mental health, which can contribute to increased suicidality. While the autistic community has long identified autistic burnout as a significant mental health risk, to date, only one study has been published. Early research has highlighted the harmful impact of autistic burnout among autistic adults and the urgent need to better understand this phenomenon. Methods: To understand the lived experiences of autistic adults, we used data scraping to extract public posts about autistic burnout from 2 online platforms shared between 2005 and 2019, which yielded 1127 posts. Using reflexive thematic analysis and an inductive "bottom-up" approach, we sought to understand the etiology, symptoms, and impact of autistic burnout, as well as prevention and recovery strategies. Two autistic researchers with self-reported experience of autistic burnout reviewed the themes and provided insight and feedback. Results: We identified eight primary themes and three subthemes across the data. (1) Systemic, pervasive lack of autism awareness. (1.1) Discrimination and stigma. (2) A chronic or recurrent condition. (3) Direct impact on health and well-being. (4) A life unlived. (5) A blessing in disguise? (6) Self-awareness and personal control influence risk. (6.1) "You need enough balloons to manage the weight of the rocks." (7) Masking: Damned if you do, damned if you don't. (8) Ask the experts. (8.1) Stronger together. The overarching theme was that a pervasive lack of awareness and stigma about autism underlie autistic burnout. Conclusions: We identified a set of distinct yet interrelated factors that characterize autistic burnout as a recurring condition that can, directly and indirectly, impact autistic people's functioning, mental health, quality of life, and well-being. The findings suggest that increased awareness and acceptance of autism could be key to burnout prevention and recovery.

What was the purpose of this study?: Although the autistic community has talked about autistic burnout for a long time, there has not been much research about the topic. This study aimed to investigate autistic burnout from the perspective of autistic adults to understand what they think causes it, the symptoms and impact on their lives, and what can be done to assist prevention and recovery. Why is this an important issue?: This issue is important because autistic people have said that autistic burnout can severely affect their quality of life and well-being and contribute to poor mental health, including the risk of suicide. What did the researchers do?: We used a computer program to collect public posts from two online platforms to look at how autistic adults described autistic burnout. We collected 1127 posts shared over a 12-year period by 683 users. To understand the adults' lived experiences, we analyzed their language at the surface level and looked for common themes across the data. What were the results of the study?: The adults in this study said that autistic burnout was often first experienced during adolescence, lasted months or years, and was hard to recover from. They described severe direct and indirect consequences for their physical and mental health, capacity to function, and ability to achieve personal goals. They described a general lack of knowledge about autism, especially among health care professionals, which led to misdiagnosis and inadequate or inappropriate treatment. Masking or "camouflaging" to pass as nonautistic was the most common reason participants gave for autistic burnout. Many used strategies to manage energy levels to avoid burnout. The autistic community was an essential source of information and support for participants. Overall, stigma, discrimination, and low awareness and acceptance of autism were responsible for the cycle of autistic burnout. How do these findings add to what was already known?: As one of the first studies about autistic burnout, we learned that it happens because of factors associated with being autistic and poor autism awareness and acceptance within society. We now know that autistic people often first experience autistic burnout when they are young, but it usually recurs, which can stop autistic people leading fulfilling lives. We learned that difficulty identifying emotions may be a risk factor and that online communication may help autistic people during recovery. We found that some positive consequences of autistic burnout include autism diagnosis in adulthood, finding the autistic community, and making empowering lifestyle changes. What are the potential weaknesses in the study?: We had limited demographic information, so we do not know how diverse the sample was or how factors such as gender, age, race, or identifying as LGBTQI may have influenced some people's experience of autistic burnout. The adults in this study had access to online platforms and could communicate in writing, and so, people with higher communication support needs may not have been included. How will these recommendations help autistic adults now or in the future?: The findings reinforce the personal stories of autistic people and show that autistic burnout is a common, consistent, and harmful experience. The findings show it is vital for health professionals to recognize autistic burnout to provide appropriate care and support because prevention and early detection could help stop the harmful cycle of autistic burnout. The findings underscore the importance of reducing discrimination and stigma against autistic people and increased acceptance.

Factors associated with age at autism diagnosis in a community sample of Australian adults.

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.

Evaluating sleep quality using the CSHQ-Autism.

BACKGROUND: Sleep problems are common in autistic children and adversely impact daytime functioning. The Children's Sleep Habits Questionnaire (CSHQ) [39] was developed from a community-based sample of children and has validated a cut-off score of 41. Katz et al. [50] developed an abbreviated 23-item four-factor version of the CSHQ, which may be useful when assessing sleep in autistic children. However, a cut-off value has not yet been developed. OBJECTIVE: Our objective was to develop and validate a cut-off for the CSHQ-autism total score in order to identify sleep problems among autistic children. We hypothesized that the derived cut-off value for the CSHQ-autism would perform better than the original CSHQ cut at 41 on validation in a sample of autistic children. METHODS: Age-specific cut-off values were developed and validated using receiver operating characteristic analysis. RESULTS: The derived cut-off values for the CSHQ-autism total score were 34, 35, 33, and 35 for the 2-3, 4-10, 11-17, and 2-17 years age groups, respectively. On validation, all cut-off values performed with moderate to high sensitivity (76.6-82.4%) and moderate specificity (69.1-75.5%), while the original CSHQ cut at 41 had high sensitivity (89.9-93.0%) but low specificity (42.6-57.7%). Using McNemar's tests, the CSHQ-autism had significantly higher specificity but lower sensitivity than the original CSHQ cut at 41 in all age groups. CONCLUSIONS: The CSHQ-autism cut-off values performed better overall than the original CSHQ cut at 41 in a sample of autistic children. The CSHQ-autism cut-off can help identify sleep problems among autistic children.

Inter-relationships between trait resilience, coping strategies, and mental health outcomes in autistic adults.

Resilience has been depicted as a key characteristic in the promotion of mental health in the face of stress and adversity. Despite high levels of stress encountered in the autistic population, resilience studies remain scarce. Using data from an Australian longitudinal adult study, this study explored the inter-relationships between trait resilience, coping, and mental health in a sample of autistic adults (N = 78). In particular, we examined the relationship between resilience and use of coping strategies, and the potential mediating role of coping strategies in the relationship between resilience and mental health outcomes. Our findings suggested that increased use of engagement coping (e.g., problem-solving, positive appraisal) and decreased use of disengagement coping (e.g., self-blame, being in denial) strategies were associated with higher levels of resilience. Further, mediation analysis results suggest that disengagement coping mediated the associations between resilience and all three mental health outcomes (i.e., depression, anxiety, and well-being), while engagement coping strategies mediated the relationship between resilience and well-being only. Our results illustrate that coping strategies may be an important mechanism in explaining the resilience-mental health relationship in autistic adults, highlighting the importance of considering stress-related constructs together (i.e., trait resilience and coping) when addressing support and intervention options for mental health difficulties in the autistic adult population. LAY SUMMARY: This research explored how resilience and coping strategies influence the mental health and well-being of autistic adults. We found that resilient autistic adults used more engagement coping strategies, less disengagement coping strategies, and reported better mental health and well-being. Considering stress-related factors together (i.e., resilience and coping) offers a novel perspective to mental health difficulties in autistic adults and may be a vital step in the development of support options in this population.

Brief Report: What Happens After School? Exploring Post-school Outcomes for a Group of Autistic and Non-autistic Australian Youth.

Young autistic Australians are less likely to attend higher education and have lower employment rates than non-autistic Australians (in: Australian Bureau of Statistics, Survey of disability, ageing and carers Australia: Summary of Findings 2018. Australian Bureau of Statistics, Canberra, 2019a). Few studies have examined post-school outcomes among this population. Using data from the first phase of a national longitudinal study including autistic (n = 79) and non-autistic (n = 107) 17-25-year olds, we found young autistic adults were (a) less likely to be employed, (b) more likely to attend technical and further education (TAFE) than university, (c) more likely to enrol in higher education on a part-time basis and (d) less likely to be engaged in both higher education and employment, than their non-autistic peers. Findings highlight a need to understand post-school trajectories of young autistic adults.

Cross-sectional and longitudinal predictors of quality of life in autistic individuals from adolescence to adulthood: The role of mental health and sleep quality.

LAY ABSTRACT: Research shows that autistic adults are at risk of a range of physical (e.g. sleep difficulties) and mental health (e.g. anxiety) conditions, as well as lower employment and post-secondary education participation; these all can affect one's quality of life. However, we have little information about what affects quality of life for autistic individuals across the lifespan and whether this differs from non-autistic people. We determined what factors (e.g. mental or physical health challenges) affected quality of life in a large group of autistic individuals aged 15-80 years compared with similar age non-autistic individuals. We also examined what factors affected quality of life of the autistic group 2 years later. We found a similar pattern of results for the autistic and non-autistic groups; depression symptoms, psychological well-being, sleep quality and autonomic symptoms (e.g. sweating) were all significant predictors of quality of life. In addition, among the autistic group, baseline quality of life had the most influence on quality of life 2 years later. These results have implications for support services, as they highlight the relationship between mental health (especially depression) and quality of life. Given that sleep challenges (e.g. insomnia) are related to mental health, an intervention addressing both insomnia and mental health may be most useful in helping autistic individuals improve their quality of life.

Sleep problems, behavior, and psychopathology in autism: inter-relationships across the lifespan.

Across the lifespan, autistic individuals experience symptomatology concomitant with their diagnosis including increased rates of daytime behavior (e.g. stereotypy, self-injurious behavior, and aggression) and psychopathology (e.g. attention deficit hyperactivity disorder, anxiety, and depression). In addition to this inter-related behavior and psychopathology, autistic children, adolescents, and adults consistently exhibit a wide variety of sleep problems (e.g. insomnia, reduced total sleep time, increased sleep onset latency, night waking, etc.). Early research and current research continue to describe the inter-relatedness among these daytime behaviors, psychopathology, and sleep problems for autistic individuals. Although descriptions of these issues appear in research, only preliminary suggestions exist for the causes and contributors toward the sleep problems or the interactions of sleep problems with psychopathology, although current research suggests a possible biopsychosocial interaction.

"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. Lay summary: Why was this study done?: There are increasing numbers of adults who are only diagnosed with autism in their teen and adult years. Research on this topic is limited, with most using surveys or interviews.What was the purpose of this study?: The purpose was to develop a revision of the Impact of Diagnosis Scale (IODS) to make it suitable to autistic teenagers and adults.What did the researchers do?: We worked with autistic research advisors to create the IODS-Preliminary Revision (IODS-PR), which has 12 items scored on a 7-point agree/disagree scale and two open-ended questions. We then gathered data using the IODS-PR from the Study of Australian School Leavers with Autism (SASLA) and the Australian Longitudinal Study of Autism in Adulthood (ALSAA). We ran a factor analysis on the scores and conducted a thematic analysis of the open-ended responses. One of the autistic advisors reviewed how we interpreted our results.What were the results of the study?: There were 92 autistic participants (46 males, 38 females, 8 nonbinary; mean age of 36 years old). On average, participants were diagnosed with autism at age 30. The factor analysis suggested three domains in the IOD-PR: Self-Acceptance and Understanding, Being Understood, and Service Access. On average, participants' scores suggested receiving an autism diagnosis was helpful for understanding and accepting themselves, but neutral for being understood by others or getting support from services.The thematic analysis identified several themes, the strongest theme was Self-Understanding, Identity, and Acceptance, where participants mostly commented on the positive new self-identity that came from their autism diagnosis. There was a Supports and Services theme that was divided into Enabled Support, Support not needed, and No or poor services. Most concerning was that many participants commented that the autism diagnosis did not enable any access to supports or that there were no appropriate supports available. There was a Valence of Response theme that was divided into Relief, Positive impact, Wish diagnosed earlier, and Negative impact. There was a Relationships theme divided into Connected with autistic community, Improves relationships, and Others lack understanding. Finally, there was a Camouflaging theme.Based on these results, the researchers are working on further revisions to the IODS-PR to make it more useful and accessible.What do these findings add to what was already known?: The adapted IODS shows promise and findings will guide further development of the tool. These early-stage findings agree with what previous research said about the impact of receiving a diagnosis of autism in adulthood.What are potential weaknesses in the study?: There are strengths and weaknesses to using a questionnaire tool to research this topic. Interview research can get a more in-depth understanding of an individual's response to the diagnosis.How will these findings help autistic adults now or in the future?: When the revised IODS is available, it could be used to evaluate support services and help clinicians understand how to help create a more positive response to diagnosis. Our findings confirm more needs to be performed about postdiagnosis supports.