Self-Report Measurement of Well-Being in Autistic Adults: Psychometric Properties of the PERMA Profiler

Community brief Why is this an important issue?"Well-being" captures a state of comfort, health, and happiness and is more than just the absence of disease or negative feelings. Only a few studies to date have focused on the emotional well-being of autistic adults. The positive psychology-based PERMA Profiler (named after the five subscales: Positive emotions, Engagement, Relationships, Meaning, and Accomplishment) is a brief self-report measure for rating well-being using 23 questions. It has been widely used for studying well-being in nonautistic populations. However, no studies have tested how well the PERMA Profiler measures well-being among autistic adults. What was the purpose of this study?The goal was to evaluate the PERMA Profiler using data from a group of autistic adults living in the United States. This was the first study that tested how well the PERMA Profiler measures the well-being of autistic adults, both overall and across the five subscales. What did the researchers do?First, we collected responses to the PERMA Profiler and other questions from more than 500 autistic adults. Then, we tested whether the PERMA Profiler measures well-being consistently and if the measure performs as expected (i.e., did it measure what it is supposed to measure?). We also compared well-being scores with the mental health (anxiety and depression) and life satisfaction of the study participants. What were the results of the study?The average overall well-being score was 5.4 out of 10, with higher values indicating experiencing well-being more often. Notably, the average well-being score was 7.0 in unrelated, previous studies of nonautistic adults). The PERMA Profiler measured well-being consistently in our sample. The overall well-being scores and each of the five subscale scores were related to mental health and life satisfaction as expected. The "Engagement" subscale did not perform as well as the others in our sample, which was consistent with the findings of studies with nonautistic adults. What do these findings add to what was already known?This is the first study to evaluate the effectiveness of the PERMA Profile or any measure of self-reported well-being in a sample of autistic adults. These results can help future researchers determine how best to study well-being, specifically in autistic adults. These findings point to important changes that might be made to the PERMA Profiler before it is used in future research. What are potential weaknesses in the study?Autistic adults were not involved in the development of the PERMA Profiler. Therefore, the measure may need to be changed by teams involving autistic coinvestigators before use with other samples. Second, our findings may not represent larger, more diverse groups of autistic adults because most participants were White (85%), well-educated (more than 80% completed at least some college), and did not have intellectual disability. Lastly, the study was conducted during the COVID-19 pandemic, which likely impacted the well-being of participants. How will these findings help autistic adults now or in the future?Our study provides preliminary support for the PERMA Profiler and suggests next steps for improving it and other measures of well-being before expanding use with autistic adults. Our findings may help the field of autism research develop new measures for understanding and improving well-being. The strengths and weaknesses of the PERMA Profiler that we identified can inform future strengths-based research involving autistic adults. Background: Studies of positive psychology and emotional well-being have broadened our understanding of mental health. However, mental health research involving autistic adults has been largely deficit-focused. Few studies have examined well-being using established positive psychological frameworks.Methods: This study examined the psychometric characteristics of the PERMA Profiler, a 23-item questionnaire that measures well-being across five subscales (Positive emotion, Engagement, Relationships, Meaning, and Accomplishment), in a sample of 517 autistic adults ages 18-84 years (M = 39.5, standard deviation [SD] = 13.3). Reliability (internal consistency), structural validity (via confirmatory factor analysis including bifactor modeling), and concurrent validity were examined.Results: The PERMA Profiler mean (SD) well-being score was 5.4 (SD = 1.7), which is notably lower than the mean of 7.0 previously found in nonautistic samples. Subscale scores were highest for Engagement (M = 6.8;SD = 1.9), followed by Accomplishment (M = 5.6;SD = 2.2), Relationships (M = 5.2;SD = 2.6), Meaning (M = 5.2;SD = 2.7), and Positive emotion (M = 5.0;SD = 2.4). Factor analyses revealed strong psychometrics (Cronbach's alpha = 0.93;Comparative Fit Index = 0.94;Tucker-Lewis Index = 0.97;root mean square error of approximation = 0.08;standardized root mean residual = 0.05) and superior fit of the bifactor model, supporting a general factor for conceptualizing well-being as opposed to a five-factor model. PERMA well-being and subscale scores were significantly correlated (p < 0.001) with mental health conditions and life satisfaction.Conclusion: These findings support use of an adapted version of the PERMA Profiler in mental health research to evaluate well-being among autistic adults. Similar to studies with nonautistic populations, the Engagement measure may not capture the experiences of the autistic population and further refinement is needed. Follow-up research should represent a more diverse autistic population, collaborate with autistic coinvestigators, and explore potential correlates of well-being (such as social stigma) while using the PERMA Profiler.

A Qualitative Study of Autistic Adults' Quality of Life During the COVID-19 Pandemic and Lockdowns

Background: Autistic people experience higher rates of most mental health conditions and report more difficulties with change than nonautistic people. As such, the periods of national stay-at-home orders (known in the United Kingdom as a "lockdown") endured since the beginning of the COVID-19 (coronavirus disease 2019) pandemic in March 2020 may have been particularly challenging for autistic people.Aim: This study explored autistic adults' experience of quality of life and well-being during the start of the COVID-19 pandemic (specifically March to August 2020) using open-text responses from an online survey.Methods: In total, 79 autistic adults from the United Kingdom (aged 21-75 years) took part. Participants completed an online survey, including open-text questions on how various factors influencing quality of life, such as social interactions, general health, well-being, and sensory experiences, were impacted by the COVID-19 pandemic and the first set of national lockdowns that occurred between March and August 2020.Results: Thematic analysis created four key themes, each illustrated by several subthemes. These four themes explore (1) health, (2) social changes, (3) support provisions, and (4) adopting new routines. Many participants discussed the impact that the COVID-19 pandemic and the first set of national lockdowns had on their health and expressed concerns regarding the transition out of periods of lockdown, including readjusting to new rules, going back to in-person interactions, and reacclimatizing to high-stimulation sensory environments. However, several participants reported positive experiences of the periods of lockdown, such as reduced commuting, more control over sensory environments, and more time to pursue personal interests and self-care.Conclusions: These findings highlight the importance of giving autistic individuals the support they need to transition back to "normality" as COVID-19 becomes endemic. Community brief Why is this an important issue?The COVID-19 pandemic and national stay-at-home order (known in the United Kingdom as a "lockdown") led to severe disruption and change in people's lives throughout 2020 and early 2021. However, only a few studies have examined the impact of the lockdowns on autistic people's well-being. What was the purpose of this study?The abrupt changes caused by the COVID-19 pandemic and lockdowns may have had a more detrimental impact on the lives of autistic people compared with others. This study aimed to explore the impact of the pandemic on the lives of autistic people and to provide context and descriptions of their experiences. What did the researchers do?We asked autistic adults a range of open-response questions using an online survey in July/August 2020 to understand how they experienced the COVID-19 pandemic and periods of national lockdown. A total of 79 autistic adults from the United Kingdom took part. The questions asked about participants' health and general well-being, their social lives, and sensory differences before (retrospectively) and during the U.K. national lockdowns that occurred between March and August 2020. What were the results of the study?Overall, most people felt that the pandemic had a negative impact on their lives. Many felt isolated and lonely due to lockdowns, and many expressed feelings of distress and anxiety at the prospect of returning to normality. However, several participants did report positive aspects of the periods of lockdown, such as having more time for personal interests and practicing self-care, and having to deal with less noise and sensory overload. What do these findings add to what was already known?To date, much of the research about the impact of the COVID-19 pandemic and lockdowns on autistic peoples' lives has been quantitative (e.g., using scores on questionnaires). This study uses qualitative data (responses to open-ended questions). This study provides important contextualization of how the pandemic and lockdowns have impacted the lives of autistic people and highlights the need for additional support in the years after the pandemic. What are potential weaknesses in the study?This study only includes autistic people, so we cannot be sure whether these experiences are unique to autistic people. Additionally, these findings may not be generalizable to the wider autistic population, including those who were unable to participate (e.g., those with learning difficulties). How will these findings help autistic adults now or in the future?The COVID-19 pandemic and lockdowns are likely to have a long-lasting impact on well-being, which may disproportionately impact autistic people. As such, autistic people may need additional, tailored, support as COVID-19 becomes endemic (i.e., no longer a pandemic but part of everyday life, somewhat like seasonal flu). Additionally, lessons may be learned from the pandemic about how society could be adapted to become more inclusive.

Impact of the COVID-19 Pandemic on Autistic Adults: a Scoping Review.

Purpose of Review: The COVID-19 pandemic and its associated restrictions have had a significant impact on people's everyday lives, including the lives of Autistic adults. We aimed to (a) synthesise all papers currently published on the impact of the COVID-19 pandemic on autistic adults and (b) identify lessons for the care and support of Autistic adults in pandemic and post-pandemic times. Recent Findings: Fifty-five papers met the inclusion criteria. Most studies focused on the pandemic's impact on the wellbeing of Autistic adults. Several studies focused on the use of (telehealth) services or the risk of COVID-19 infection/hospitalisation. Summary: Autistic adults were significantly impacted by the pandemic, both directly as indicated by higher COVID-19 infection and hospitalisation rates, but also indirectly due to severe service disruptions and social restrictions. Even though there were large differences observed both between as well as within individuals in terms of the negative/positive effects of the COVID-19 pandemic, most studies reported a negative effect on Autistic adults' mental health. We draw several lessons from this review for the future care and support of Autistic adults, all of which must be underpinned by participatory research methods, that is, where Autistic community members are actively involved in setting research questions, testing the acceptability of the methods and interpreting and disseminating the results. Supplementary Information: The online version contains supplementary material available at 10.1007/s40474-023-00268-6.

Barriers to healthcare and their relationship to well-being and social support for autistic adults during COVID-19.

AIM: The present study aimed to investigate barriers to healthcare and their relationships to social and emotional well-being and intersectional inequalities for autistic adults during COVID-19 restrictions in the UK. BACKGROUND: Autistic adults experience severe health inequalities and report more barriers to accessing health services compared to other both disabled and non-disabled populations. The COVID-19 pandemic has impacted many areas of society that may have increased vulnerability of autistic people to social and health inequalities, including delivery of healthcare from in-person to remote methods. METHOD: One hundred twenty-eight autistic adults who lived in the UK took part in an online survey. Measures included the Barriers to Healthcare Checklist (Short Form) and PROMIS outcome measure bank to assess emotional well-being and social support. Participants rated their agreement with items, retrospectively considering three different points of the trajectory of COVID-19 restrictions: before COVID-19, during the first lockdown in spring 2020, and in the month prior to taking the survey during autumn 2020. They completed a follow-up survey six months later to continue to assess change as restrictions in the UK were eased. FINDINGS: The average number of barriers to healthcare showed no significant change between all four time points. However, the nature of barriers to healthcare changed at the point of lockdown and persisted beyond the easing of COVID-19 restrictions. Barriers to healthcare were associated with some social and emotional well-being variables and demographic groups including gender, education and presence of additional disabilities. The findings may help to identify areas to target to improve access to both remote and in-person health systems for autistic people as modes of delivery continue to change over time.

COVID-19 and Perceived Changes to Quality of Life, Anxiety, Depression, and Loneliness in Autistic and Other Neurodivergent U.K. Adults.

Background: In the United Kingdom, we have experienced many changes to our daily lives as a result of COVID-19. Autistic and other neurodivergent (ND, e.g., those with attention-deficit hyperactivity disorder) adults may be more vulnerable to negative effects of the pandemic due to pre-existing mental health disparities and unmet support needs. Furthermore, there is little research, either pandemic related or otherwise, which considers how the experiences of autistic adults with additional intersecting ND identities might differ from those without. Methods: We collected data from an online survey during June 2020 to September 2020 to explore the psychological impact of the coronavirus pandemic on U.K. adults (N = 286, age 18-72 years). Participants included neurotypical (NT) adults (N = 98), autistic adults (N = 73), other ND adults (N = 53), as well as autistic adults with an additional intersecting ND identity (N = 63). We measured and compared levels of quality of life (QoL), depression, anxiety, and loneliness across groups as well as perceived change in these as a result of the pandemic. Results: Autistic adults, with and without additional ND identities, had consistently low QoL and high anxiety, depression, and loneliness compared with NT adults. We found no differences in these areas between autistic adults with and without additional intersecting ND identities. In some areas, non-autistic ND participants were also doing poorly compared with their NT peers. Many participants felt that their QoL, mental health, and loneliness had worsened due to the pandemic, and this was largely similar across groups. Conclusions: These results highlight that COVID-19 may have led to increased need and demand for mental health services across the U.K. adult population. Both autistic and ND adults may be in particular need of increased (and improved) mental health and well-being support. This is likely because of pre-existing differences in mental health and well-being as well as individuals facing further difficulties as a result of the pandemic.

Why is this an important issue? The coronavirus pandemic has been difficult for many people. Some researchers have found that the pandemic may have been especially difficult for autistic adults and those who are neurodivergent in another way. This might be because autistic and neurodivergent people often experience poor mental health and have a variety of unmet needs. What was the purpose of this study? The purpose of this study was to explore quality of life, depression, anxiety, and loneliness in different groups of adults during the pandemic. We also wanted to explore whether people felt that these had become worse during the pandemic. We were interested to explore differences between autistic adults and other groups of neurodivergent adults. This included autistic adults, autistic adults who were neurodivergent in another way, non-autistic neurodivergent adults, and a comparison group of adults who were not autistic or neurodivergent in any way. What did the researchers do? We recruited participants to take part in an online survey during June 2020 to September 2020. We advertised the study using social media and research websites. A total of 286 adults from the United Kingdom completed our survey. What were the results of the study? Autistic adults had consistently low quality of life and high anxiety, depression, and loneliness compared with the comparison group. This was the same regardless of whether the autistic adults were neurodivergent in another way too. In some areas, non-autistic neurodivergent participants had lower quality of life than the comparison group. Their depression and loneliness scores were somewhere in between autistic participants' and the comparison group's. Many participants felt that their quality of life, mental health, and loneliness had worsened due to the pandemic. This was similar for participants in all the groups. However, there were also participants who felt much better due to coronavirus restrictions. What do these findings add to what was already known? We now know that autistic adults have experienced poor quality of life, mental health, and loneliness during the pandemic. We also found that there were no differences based on whether autistic adults were also neurodivergent in another way (e.g., an autistic adult with attention-deficit hyperactivity disorder). We also know that non-autistic neurodivergent adults have experienced low quality of life during this time. This is important because there has been very little research on other non-autistic neurodivergent adults' experiences during COVID-19 restrictions. What are potential weaknesses in the study? Most of our participants were white British and female. This means that our findings may not be relevant to all adults in the United Kingdom. Our study was carried out during the pandemic, which means that we do not know if these differences between the groups will continue to be true in the future. How will these findings help autistic adults now or in the future? We hope that these findings will help to argue for more support to be made available to promote good quality of life and reduce mental health difficulties for autistic, and other neurodivergent, adults. Lots of our participants felt that their quality of life and mental health had got worse due to the pandemic. Because of this, it is now even more important that governments make changes to policy and funding to provide better services and support for autistic and neurodivergent adults.

Implications of Employment Changes Caused by COVID-19 on Mental Health and Work-Related Psychological Need Satisfaction of Autistic Employees: A Mixed-Methods Longitudinal Study.

This mixed-methods study examined longitudinal data, assessing Israeli autistic adults' employment-related changes, resulting from the COVID-19 pandemic. In the quantitative phase, 23 participants answered a survey before and during COVID-19, assessing work-status, mental health, and work-related psychological need satisfaction. The qualitative phase included interviews with ten employed participants. Results indicate a significant decrease in mental health of participants who lost their jobs during COVID-19, while participants who continued to physically attend work, maintained pre-COVID-19 levels on all assessed variables. Participants who transitioned to remote-work from home, showed a marginally significant deterioration in mental health and a significant decrease in satisfaction of work-related psychological needs for competence and autonomy. Qualitative accounts supplement these findings and portray advantages and disadvantages of remote-work.