Experiences of Support Following Autism Diagnosis in Adulthood

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

Choose your Own Adventure: Pathways to Adulthood Autism Diagnosis in Australia

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

A Qualitative Study of Adults’ and Support Persons’ Experiences of Support After Autism Diagnosis

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

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

Barriers to healthcare for Australian autistic adults

Barriers to healthcare experienced by Australian autistic adults have not been previously explored. We conducted a cross-sectional investigation of barriers to healthcare and associated factors from a subtle realism perspective. Perceived barriers to healthcare were obtained from the Barriers to Healthcare Checklist Short-Form (BHC). A total of 263 autistic and 70 non-autistic individuals completed the BHC. On average, autistic adults reported more barriers to healthcare (4.58) than non-autistic adults (0.76). Gender diversity, higher levels of generalised anxiety, greater global disability and less satisfaction with social support contributed to the experience of barriers to healthcare in autistic participants in regression modelling. Australian autistic adults face substantial barriers to healthcare. Understanding these barriers provides an opportunity to develop approaches to improve access; such as co-designing a healthcare access roadmap for autistic adults, with co-designed policies and practices which advocate for the needs of autistic adults. Lay abstract: This study looked at how Australian autistic and non-autistic adults experience barriers to healthcare. We asked autistic and non-autistic adults to complete the Barriers to Healthcare Checklist Short-Form (BHC). We analysed data from 263 autistic adults and 70 non-autistic adults. We found that autistic adults experienced more barriers to healthcare than non-autistic adults. Gender diversity, feeling more anxious, having greater disability and feeling unsatisfied with social support contributed to barriers to healthcare in autistic participants. We recommend interventions such as developing and implementing a national action plan, similar to the National Roadmap for Improving the Health of People with Intellectual Disability (2021) to reduce barriers and address unmet healthcare needs of Australian autistic adults. We also recommend working with autistic adults to develop new policies and strategies, implementing environmental adaptations to health care facilities, and increasing Autism education opportunities for health professionals to address gaps in knowledge

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

Diagnosis of autism in adulthood: A scoping review

More adults are undergoing autism assessment due to recent changes in awareness, diagnostic criteria and professional practices. This scoping review aimed to summarise research on autism diagnosis in adulthood and identify any gaps for future study. The authors searched for studies involving first-time assessment and diagnosis of autism in adults, which identified 82 studies from 13 countries using various methodologies. Six themes of (1) prevalence, (2) diagnostic pathways and processes, (3) gender, (4) psychosocial characteristics, (5) co-occurring conditions and (6) experiences of diagnosis were identified across the studies. Findings suggest that receiving an autism diagnosis has a significant emotional impact on adults, but accessibility and processes are inconsistent, and formal support services are lacking. More research is needed on autism diagnosis in adults with intellectual disability, consequences of the timing of diagnosis, and support after diagnosis. 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

Predictors of the Quality of Life of Informal Carers of Adults on the Autism Spectrum

Carers of adults on the autism spectrum often experience high levels of stress, worry, and caregiver burden. There are few studies identifying the predictors of carer mental well-being and none have been conducted in Australia. Data from the Autism Cooperative Research Centre for Living with Autism’s Australian Longitudinal Study of Autism in Adulthood was used to test the conceptual model by Sonido et al. (Rev J Autism Dev Disord, 2019, https://doi.org/10.1007/s40489-019-00177-8) by (a) identifying the predictors of mental well-being for carers of adults on the spectrum, (b) using model selection to determine which predictors contribute to the model of best fit, and (c) testing for mediating relationships between the predictors. Several predictors were directly associated with carer psychological quality of life, including carer age, care recipient intellectual disability, and carer intolerance of uncertainty. Model selection strongly supported the inclusion of most clusters from the conceptual model. Some mediating relationships were found, such as care recipient depressive behaviours mediating the relationships between caregiver burden and psychological quality of life. Future studies of the conceptual model will improve understanding of the predictors of carer mental well-being and enable tailored interventions to improve the psychological health of carers of adults on the autism spectrum

Towards the measurement of autistic burnout

Studies are emerging documenting the experience of fatigue, exhaustion and loss of functioning that has long been described by autistic adults as autistic burnout. New assessment tools are needed to enable identification and diagnosis. Here, we sought to identify factors associated with severity, develop an autistic burnout assessment and test the prepublication AASPIRE Autistic Burnout Measure tool. A co-produced survey of 141 autistic adults with experience of autistic burnout (98% above cut-off for depression) was subjected to exploratory factor analysis and scale reduction to identify a grouping of Autistic Burnout Severity Items. Autistic Burnout Severity Items showed strong overall internal consistency and acceptable internal consistency across four factors. Masking and depression were associated with the Autistic Burnout Severity Items, once variation in alexithymia, interoception, repetitive behaviours, sensory sensitivities and autism severity had been adjusted for. There is some suggestion that the Autistic Burnout Measure may not be as robust as the Autistic Burnout Severity Items, particularly as it showed a significant relationship with depression but not masking. Our findings alongside recent literature highlight a core phenomenon, comprising exhaustion, withdrawal and cognitive overload, associated with stressors potentially unique to autistic people. Further disambiguation from autistic shutdown and other conditions is needed in work towards the measurement of autistic burnout. Lay abstract: Autistic burnout has been talked about by autistic adults for some time on blogs and in social media. Now, research describes fatigue, exhaustion and other related symptoms experienced by autistic people. We need new ways to help identify autistic burnout. In this study, we tested a new questionnaire called the AASPIRE Autistic Burnout Measure, and we investigated things that are linked to worse autistic burnout. We also trialled a group of Autistic Burnout Severity Items that we made. Working with an autistic researcher, we made the Autistic Burnout Severity Items based on published definitions of autistic burnout. Autistic adults (n = 141) who had experienced autistic burnout completed an online survey. We found that autistic burnout was connected to masking and depression. The Autistic Burnout Measure tool was associated with depression but not with masking. It was not very accurate in telling apart participants who were currently experiencing burnout versus those who were reporting on their past experience. The Autistic Burnout Severity Items might have problems with subscales adding together to measure autistic burnout. More work is needed on how to measure autistic burnout. Our research and other recent studies show autistic people experience a combination of exhaustion, withdrawal and problems with their concentration and thinking. Burnout seems to be linked to the stress experienced by autistic people in their daily lives. We need more research to understand the difference between autistic burnout and other conditions and experiences. We need to develop assessment tools that can help identify this burnout

“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