A repeated cross-sectional study of daily activities of autistic adults.

It is crucial to arrive at a comprehensive understanding of the types of daily activities autistic adults typically engage in. However, previous research has almost exclusively focused on vocational or education activities. Further, it remains unclear how and whether specific daily activities participation rates change proportionally over time, vary by gender, or compare to nationally representative data. Utilizing eight annual data waves from the Netherlands Autism Register (NAR) this study aims to bridge this gap. Participants were 2449 autistic adults who indicated their participation in 18 daily activities. Results suggest that autistic adults engaged most frequently in vocational activities (e.g., paid employment, study) and participation rates were stable over time. Participation rates in non-vocational activities (e.g., hobbies, homemaking) fluctuated proportionally over time, with reports of no structured daytime activities reducing over time. Labor force participation amongst NAR participants was significantly lower than Dutch population data for the same time periods. Unemployment rates fluctuated, and were significantly higher than population data, but not for all time points. Females compared to males were overrepresented in unpaid daily activities (e.g., study, volunteer, housemaker) and work incapacitation, and underrepresented in paid employment. Employment differences in gender corresponded to national data. These findings characterize more clearly the daily activities of autistic adults, and highlights areas where support may have greater impact (e.g., females in employment).

An ecological systems model of employee experience in industry-led autism employment programmes.

LAY ABSTRACT: We asked 33 autistic adults from two industry-led employment programmes about their experiences in the programmes. These are programmes started by companies to recruit and support autistic people in work. We also asked about their workplace supports, relationships and how they thought the programme had impacted their life. Understanding the experiences of people in these industry-led employment programmes is important as the information can help to improve the programmes and participants' experiences. After reviewing the interviews, we found five themes that best described the employee's experience: (1) working involves multiple job tasks that evolve as the employment context changes; (2) relationships in the workplace are diverse and are influenced by the type of work participants do and the work environment; (3) workplace needs change as the autistic employees learn to navigate their work environment; (4) autistic employees develop a professional identity in the workplace as they master work and feel more integrated in the workplace; and (5) recommendations for the development of supportive workplace environments for autistic people. We explored the way that aspects of the two employment programmes (e.g. training) and factors outside the programme changed with time and contributed to the participant's experience. We developed a new model to capture individual and workplace factors that contribute to the experience of autistic people who participate in industry employment programmes.

Employment profiles of autistic people: An 8-year longitudinal study.

LAY ABSTRACT: Autistic adults experience difficulties finding and keeping employment. However, research investigating reasons that might explain this difficulty produce mixed results. We gave a survey to 2449 autistic adults and used a statistic method to group them based on their employment status over 8 years. We identified four employment groups that best captured the experiences of autistic adults; this included a group that experienced stable unemployment, a group that experienced stable employment, a group that had high employment that reduced over time, and a group whose employment increased over the 8 years. Further analysis showed that those with fewer autistic traits, younger age, male gender, higher education, later diagnosis age and no co-occurring conditions were more likely to have stable employment. People whose employment changed over time were more likely to have a higher level of education than the stable unemployment group, and those in the increasing employment group were younger age and had no co-occurring conditions. These findings help us better understand that not all autistic adults' experiences of employment are the same, which helps focus where employment programmes and support may be most needed, for example, people who identify as women or have a co-occurring condition.

Understanding language preference: Autism knowledge, experience of stigma and autism identity.

LAY ABSTRACT: There is ongoing discussion around what language is acceptable when talking about someone with an autism diagnosis, especially regarding person-first (e.g. person with autism) or identity-first (e.g. autistic person) language. We asked 198 Australian adults with an autism diagnosis what terminology they prefer and what they find offensive. We also asked questions to understand their experience of stigma, their autism knowledge and how much they endorse an autism identity, to investigate if these factors were associated with their language preferences. Overall, there was no significant association between these three factors and person-first terminology. For identity-first terms, those who endorse a stronger autism identity tended to find identity-first terms more preferable and less offensive, whereas those who reported greater experiences and internalisation of stigma tended to find identity-first terms less preferable and more offensive. Previous research has tended to ask what language participants prefer. The findings of this work help provide some context as to why people prefer or find offensive specific terms, at least for identity-first language.

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

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

Cost-benefit analysis of a non-government organization and Australian government collaborative supported employment program for autistic people.

LAY ABSTRACT: Relative to the size of the population, there are fewer autistic people than non-autistic people in the workforce. Employment programs that provide extra support to autistic people may help them to gain and keep jobs that are suited to their skills and expertise. In this study, we reviewed the DXC Dandelion Program. This is a supported autism employment program run in partnership with the Australian Government. The program provided jobs to autistic people who worked in information and communications technology roles, such as software testing and cyber security. In this study, we examined some of the benefits of the program for the autistic people who participated in it. We also examined the benefits of the program to the government. We found that there are many savings to government when autistic people are employed in jobs that are matched to their skills and abilities, compared to being unemployed or working in jobs that are below their level of education, training, or skills.

"It Defines Who I Am" or "It's Something I Have": What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer?

There has been a recent shift from person-first to identity-first language to describe autism. In this study, Australian adults who reported having a diagnosis of autism (N = 198) rated and ranked autism-terms for preference and offensiveness, and explained their choice in free-text. 'Autistic', 'Person on the Autism Spectrum', and 'Autistic Person' were rated most preferred and least offensive overall. Ranked-means showed 'person on the autism spectrum' was the most preferred term overall. Six qualitative themes reflected (1) autism as core to, or (2) part of one's identity, (3) 'spectrum' reflecting diversity, (4) the rejection of stigmatising and (5) medicalised language, and (6) pragmatics. These findings highlight the importance of inclusive dialogue regarding individual language preference.

Brief Report: Learning About Autism: Is the Source of Autism Knowledge Associated with Differences in Autism Knowledge, Autism Identity, and Experiences of Stigma.

People on the autism spectrum can learn about autism from various sources, likely differing in the information, portrayal, and discussion they offer. The present study investigates where autistic people learn about autism, and whether their information source is associated with their level of autism knowledge, perceptions of stigma, and development and expression of an autism identity. A survey of 198 Australian adults with an autism diagnosis showed that learning about autism from conventional sources (e.g., professionals, parents) was associated with more internalised stigma, lower endorsement of special abilities and autism identity, whereas online blogs and social media showed the opposite pattern as well as more accurate knowledge of autism. The findings raise questions about how authoritative sources of information discuss autism.

Eating Challenges in Children with Autism Spectrum Disorder: Development and Validation of the "Aut-Eat" Questionnaire (AEQ).

The Aut-Eat Questionnaire (AEQ) provides a novel and comprehensive assessment of eating problems and patterns in children with ASD. To establish the internal consistency and discriminant validity of the AEQ, parents of children with ASD (n = 105, Mage = 40.85, SD = 15.67 months) or typical development (TD; n = 98, Mage = 50.33, SD = 16.50 months) completed the AEQ. Questionnaire construction, content validity, factor analysis, internal consistency and discriminant validity are reported. The AEQ was reliable with high internal consistency in most domains. Significant differences were found between groups in all domains. The AEQ is a reliable and valid tool and may help to characterize eating difficulties in this population.

Factors associated with parental resolution of a child's autism diagnosis: A systematic review.

Background: Receiving a child's autism diagnosis can be stressful; as such, parent resolution contributes to the wellbeing and development of healthy parent-child relationships. In other significant childhood diagnoses (e.g., cerebral palsy, diabetes), the degree to which parents adjust to (a) their child's diagnosis and (b) their changes in expectations concerning their child's development and capacity (referred to as resolution to diagnosis), has been associated with improved outcomes including facilitating parent-child relationships and improved parental wellbeing. Given potential benefits to parent and child, and the heterogenous nature of autism, examining the unique factors associated with resolution to diagnosis is important. In this systematic review we identified factors that support or inhibit parental resolution to their child receiving a diagnosis of autism. Methods: We completed a systematic review following PRISMA guidelines of peer-reviewed studies from 2017 to 2022, that investigated parental resolution or acceptance of an autism diagnosis. Papers including "acceptance" needed to encompass both accepting the diagnosis and the implications regarding the child's abilities. We searched six databases (Scopus, Web of Science, MEDLINE, PsycINFO, ProQuest), with additional papers located following review of reference lists. Results: Fourteen papers with 592 participants that investigated parental resolution or acceptance of an autism diagnosis, were included. We identified six common factors that facilitate or inhibit parental resolution and acceptance of an autism diagnosis including: symptom severity; religion, belief, and culture; knowledge and uncertainty; negative emotions (i.e., denial, shame, guilt); positive emotions; and support. Greater resolution was associated with improved "attunement and insightfulness" in the parent-child relationship. Limitation: The review was limited by the small number of studies meeting inclusion criteria. Second, the quality of included studies was mixed, with over half of the studies being qualitative and only one randomized control trial (RCT) identified. Conclusion: Parental resolution can have an impact on parent's perception of their child's capabilities and impact the parent-child relationship. We identified six categories that aid in inhibiting or promoting resolution to diagnosis. Despite taking a broad approach on the definition of resolution, the low number of studies identified in the review indicates a need for more research in this area. Systematic review registration: http://www.crd.york.ac.uk/PROSPERO/, PROSPERO [ID: CRD42022336283].

Non-autistic employees' perspectives on the implementation of an autism employment programme.

LAY ABSTRACT: We asked 32 employees who work alongside autistic trainees for their thoughts about the autism employment programme that is running in their company. Specifically, we analysed their responses to understand how the employees perceived the autism employment programme's implementation and outcomes. How employees within an organisation view diversity, and the nature of specific programmes to increase the inclusion of certain groups of individuals (e.g. autistic employees) in their organisation, can impact the success of these programmes. Research in other organisations has suggested that diversity perspectives that fully support the inclusion of people with diverse backgrounds in the organisation lead to better outcomes. Thematic analysis of the responses in this study revealed that the views of the employees fit three main themes: programme benefits, programme challenges and concerns about workforce integration. The programme benefits theme suggested that the autism employment programme was viewed positively. However, negative attitudes and perceptions of special treatment contributed to programme challenges, which were similar to challenges that have been observed with other disability and diversity programmes. The design of this specific programme led to concerns about workforce integration, such as reduced opportunity for social and work integration into the broader workplace. This research extends the research on diversity management in the context of autism employment, and it provides practical understanding into ways in which organisational-based autism employment programmes are more and less successful.

Domains of the autism phenotype, cognitive control, and rumination as transdiagnostic predictors of DSM-5 suicide risk.

Suicide is a global health problem affecting both normative and clinical populations. Theoretical models that examine mechanisms underlying suicide risk across heterogeneous samples are needed. The present study explored core characteristics associated with autism spectrum disorder (ASD), a sub-population at high risk of suicide, as well as two dimensional cognitive constructs, as potential transdiagnostic predictors of suicidal ideation in a clinically diverse sample. Participants (n = 1851, 62% female) aged 18 to 89 years completed online questionnaires assessing: social communication difficulties; insistence on sameness; cognitive control; and rumination. Forty-three percent of participants reported the presence of at least one neurodevelopmental or neuropsychiatric disorder. One third of the sample reported some suicidal ideation (SI), and 40 percent met the threshold for concern for depression. All hypothesized constructs were associated with SI and depression and, with the exception of rumination, contributed significantly to SI. Participants reporting SI returned significantly higher social communication difficulties and insistence on sameness, and lower levels of cognitive control than those reporting no-SI. The study was limited by the use of a cross-sectional sample assessed with self-report measures. All diagnoses were self-reported and the study was additionally limited by the use of a single item indicator of suicidal ideation. These findings support a role for constructs associated with the ASD phenotype and associated broad cognitive domains as potential risk factors underlying suicidal ideation in a large clinically diverse sample. Our findings suggest directions for future longitudinal research studies, along with specific targets for suicide prevention and clinical practice.

Workplace Social Challenges Experienced by Employees on the Autism Spectrum: An International Exploratory Study Examining Employee and Supervisor Perspectives.

Social challenges represent a significantly under-researched area when it comes to the poor employment outcomes in autism. In this exploratory study employees on the autism spectrum (N = 29) and supervisors (N = 15), representing seven continents, provided 128 written examples of workplace-based social challenges, their interpretation, consequences and resolution. Content analysis revealed that types of social challenges were individually oriented or associated with the work-environment. Social challenges were frequently attributed to internal or personal factors with direct consequences for the employee. Resolutions were more frequently targeted toward the individual than the workplace, and hindered employees' experience of work. This international study represents a first look at the types of social challenges that impact equitable work participation of autistic people.

The autism advantage at work: A critical and systematic review of current evidence.

BACKGROUND: Despite difficulties entering the workforce, people on the autism spectrum are often successful. Furthermore, they are suggested to bring unique abilities (e.g., attention to detail, tolerance for repetitive tasks) related to the repetitive and restrictive behaviours and interests (RRBI) diagnostic domain, that may be advantageous in employment. AIMS: This critical and systematic review examined evidence supporting the superior workplace performance of employees on the autism spectrum, particularly regarding the RRBI domain. METHOD AND PROCEDURES: A systematic review (PRISMA guidelines) evaluated empirical peer-reviewed studies that assess employees on the autism spectrum's performance in the workplace or on work-specific tasks. Nine databases were searched, with additional papers identified from reference lists and consultation. OUTCOMES AND RESULTS: Two quantitative and four qualitative papers met criteria. Results reflect themes; attention to detail, tolerance of repetitive tasks, special/circumscribed interests, other RRBI related advantages/concerns. CONCLUSIONS AND IMPLICATIONS: Due to the nature and quality of the identified studies there is currently no strong evidence supporting or negating a workplace autism advantage. This review highlights the need for more research and urges constraint in utilising stereotypes that may not apply to all on the autism spectrum, arguing an individual differences approach to supporting autism strengths at work.

Against the odds: Hope as an antecedent of support for climate change action.

While individuals are often viewed as rational actors, engaging in action that promises success, sometimes they act despite low odds. We report two studies that investigate hope as a motivational resource during times when the odds of success seem low. We argue that when people are personally invested in the cause, their hope leaps with emerging possibility (low likelihood) of a positive outcome, but linearly aligns with likelihood for more probable outcomes (i.e., hope is a cubic function of likelihood). Crucially, hope then motivates support for collective action, in this case support for climate action, thus illuminating the possible antecedents for collective action against the odds. In Study 1, with a highly invested sample, hope mediated the relationship between cubic likelihood and support for climate change action. Study 2 extended these findings, showing that for individuals strongly invested in the outcome (but not for those less invested), hope arose with possibility but not probability of success, leading to greater support for climate change action. Hope's unique motivational role arises when the odds are low, when success is only possible rather than probable. These then represent the conditions that facilitate support for collective action against the odds.

A systematic review of screening tools for the detection of autism spectrum disorder in mainland China and surrounding regions.

Screening for autism spectrum disorder is the first step toward early detection and diagnosis, thereby impacting the likelihood of children accessing early intervention and, importantly, improving long-term outcomes. This systematic review aimed to (a) establish a clear baseline of autism spectrum disorder screening tools currently used throughout mainland China and surrounding regions, (b) identify the strengths and limitations of these instruments, and (c) develop specific recommendations regarding screening for autism spectrum disorder throughout Chinese-speaking countries. Databases were searched for recent (2015-2018) articles published in Chinese or English languages. Twenty-two studies (13 Chinese, 9 English) met inclusion criteria; two from Taiwan and the remainder from mainland China. Studies varied greatly in the extent of psychometric analyses and reported autism spectrum disorder prevalence. The majority of diagnoses were based on Diagnostic and Statistical Manual of Mental Disorders (4th ed. (DSM-IV) or 5th ed. (DSM-5)) criteria, although a small number of studies utilized gold-standard diagnostic assessment instruments. It is recommended that a systematic, multi-tiered, screening network be established to improve the identification of autism spectrum disorder in China and surrounding regions. Assessment and diagnosis need to be culturally appropriate, and amenable to low-resource settings. In addition, increased public awareness programs to reduce stigma will be important in improving outcomes for children with autism spectrum disorder.

Predictors of mental health and well-being in employed adults with autism spectrum disorder at 12-month follow-up.

People with Autism Spectrum Disorder (ASD) commonly experience poor outcomes in adulthood. Previous research on adult outcomes has focused on negative aspects of health and well-being, while positive well-being remains understudied. The current study charted 12-month change in daily living skills, job satisfaction, depression, anxiety, and positive well-being in 36 (32 male) newly employed adults with ASD aged 18 to 57 years who were participating in a supported employment program. There was a small increase in daily living skills, and a slight decrease in job satisfaction, with all other measures remaining stable over time. Regression analyses revealed that, controlling for baseline depression, positive well-being negatively predicted depression at follow-up. No significant predictors of anxiety were identified. Social support and depression at baseline were associated with positive well-being at follow-up; however, they were no longer significant predictors after the effects of baseline positive well-being were taken into account. The findings provide evidence that positive well-being may buffer against depression in people with ASD. Our finding of stability of mental health and well-being measures over time indicates more research is required to uncover the mechanisms underpinning mental health and well-being outcomes in employed adults with ASD. Autism Res 2019, 12: 482-494 © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: People with autism commonly experience poor outcomes in adulthood. We studied mental health and well-being in newly employed adults with autism who were participating in a supported employment program. Apart from a slight increase in daily living skills and a slight decrease in job satisfaction, other measures of mental health and well-being remained stable over time. Our findings suggest that positive well-being may protect against symptoms of depression in people with autism.

If you've employed one person with autism : An individual difference approach to the autism advantage at work.

In this letter to the editor, we comment on the 'autism advantage' - the idea that superior skills associated with autism (e.g. attention to detail) present a talent in employment - an example of which is a recent discussion by Austin and Pisano. We welcome advocacy that raises awareness around the strengths and capabilities of people with autism, and also the need to reform human resource management processes that disadvantage them. However, we are concerned that, by highlighting certain stereotypes (e.g. the 'talented nerd lacking social graces'), the heterogeneity of autism may be overlooked and support needs downplayed. Furthermore, not appreciating individual differences might result in a misalignment between work-profile and employment, pressure to outperform peers without autism and a failure to appreciate the diverse interests of people with autism. We argue that an individual differences approach will prove more sustainable for improving long-term employment outcomes.