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.

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.

Self-harm and Suicidality Experiences of Middle-Age and Older Adults With vs. Without High Autistic Traits.

Suicide has been identified as a leading cause of premature death in autistic populations. Elevated autistic traits have also been associated with higher rates of self-harm, suicidal ideation, and suicidal self-harm in the general population, but this has yet to be examined in older age. Using baseline cross-sectional data from the PROTECT study, middle-age and older adults with high autistic traits (n = 276) had significantly higher rates of suicidal ideation, deliberate self-harm, and suicidal self-harm than an age/sex-matched comparison group (n = 10,495). These differences represented a 5- to 6-fold increase in likelihood for self-harming and suicidality. These findings, which remained when controlling for depression symptoms, suggest that middle-age and older adults with high autistic traits may be particularly at risk of self-harm and suicidal behaviours.

The cognitive profile of middle-aged and older adults with high vs. low autistic traits.

Cognitive differences in memory, information processing speed (IPS), and executive functions (EF), are common in autistic and high autistic trait populations. Despite memory, IPS and EF being sensitive to age-related change, little is known about the cognitive profile of older adults with high autistic traits. This study explores cross-sectional memory, IPS and EF task performance in a large sample of older adults in the online PROTECT cohort (n = 22,285, aged 50-80 years), grouped by high vs. low autistic traits. Approximately 1% of PROTECT participants (n = 325) endorsed high autistic traits [henceforth Autism Spectrum Trait (AST) group]. Differences between AST and age-, gender-, and education-matched comparison older adults (COA; n = 11,744) were explored on memory, IPS and EF tasks and questionnaires administered online. AST had lower performance than COA on tasks measuring memory, working memory, sustained attention, and information processing. No group differences were observed in simple attention or verbal reasoning. A similar pattern of results was observed when controlling for age, and current depression and anxiety symptoms. In addition, AST self-reported more cognitive decline than COA, but this difference was not significant when controlling for current depression symptoms, or when using informant-report. These findings suggest that autistic traits are associated with cognitive function in middle-aged and later life. Older adults with high autistic traits experienced more performance difficulties in a range of memory, IPS and EF tasks compared with the low autistic traits comparison group. Further longitudinal work is needed to examine age-related change in both older autistic and autistic trait populations.

Telehealth Autism Diagnostic Assessments With Children, Young People, and Adults: Qualitative Interview Study With England-Wide Multidisciplinary Health Professionals.

BACKGROUND: Autism spectrum disorder (hereafter, autism) is a common neurodevelopmental condition. Core traits can range from subtle to severe and fluctuate depending on context. Individuals can present for diagnostic assessments during childhood or adulthood. However, waiting times for assessment are typically lengthy, and many individuals wait months or even years to be seen. Traditionally, there has been a lack of standardization between services regarding how many and which multidisciplinary health professionals are involved in the assessment and the methods (diagnostic tools) that are used. The COVID-19 pandemic has affected routine service provision because of stay-at-home mandates and social distancing guidelines. Autism diagnostic services have had to adapt, such as by switching from conducting assessments in person to doing these fully via telehealth (defined as the use of remote technologies for the provision of health care) or using blended in-person or telehealth methods. OBJECTIVE: This study explored health professionals' experiences of and perspectives about conducting telehealth autism diagnostic assessments, including barriers and facilitators to this, during the COVID-19 pandemic; potential telehealth training and supervision needs of health professionals; how the quality and effectiveness of telehealth autism diagnostic services can be enhanced; and experiences of delivering postdiagnostic support remotely. METHODS: A total of 45 health professionals, working in varied settings across England, participated in one-off, in-depth semistructured qualitative interviews. These were conducted via videoconferencing or telephone. Altogether, participants represented 7 professional disciplines (psychiatry, medicine, psychology, speech and language therapy, occupational therapy, nursing, and social work). The data were then analyzed thematically. RESULTS: Thematic analysis indicated the following 7 themes: practicalities of telehealth, telehealth autism diagnostic assessments, diagnostic conclusions, clinical considerations, postdiagnostic support, future ways of working, and health professionals' experiences and needs. Overall, telehealth autism diagnostic assessments were deemed by many participants to be convenient, flexible, and efficient for some patients, families, and health professionals. However, not all patients could be assessed in this way, for example, because of digital poverty, complex clinical presentation, or concerns about risk and safeguarding. Working remotely encouraged innovation, including the development of novel assessment measures. However, some participants expressed significant concerns about the validity and reliability of remotely assessing social communication conditions. CONCLUSIONS: A shift to telehealth meant that autism diagnostic services remained operational during the COVID-19 pandemic. However, this method of working has potentially affected the parity of service, with people presenting with clinical complexity having to potentially wait longer to be seen or given a diagnostic opinion. There is also a lack of standardization in the provision of services. Further research should identify evidence-based ways of enhancing the timeliness, accessibility, and robustness of the autism diagnostic pathway, as well as the validity and reliability of telehealth methods.

Autism Diagnostic Assessments With Children, Adolescents, and Adults Prior to and During the COVID-19 Pandemic: A Cross-Sectional Survey of Professionals.

Background: Access to timely high quality autism diagnostic assessments has traditionally been patchy; many individuals wait months, if not years, for an appointment. The onset of the COVID-19 pandemic has likely impacted autism diagnostic services. This study investigated professionals' experiences of, and thoughts about: (1) how autism diagnostic assessments were conducted before the pandemic; (2) adaptations to service provision because of the pandemic; and (3) challenges, risks, advantages and opportunities associated with autism assessments conducted via online platforms (telehealth). Method: Fifty-two professionals, based in different autism diagnostic services and working with children, adolescents and/or adults, completed an online cross-sectional survey in August and September 2020. This comprised demographic questions (about professionals' roles and experiences), and closed and open questions about service provision and telehealth autism assessments. Results: There was substantial variation in how autism assessments were conducted prior to and during the pandemic; for example, in relation to the number of professionals involved in the assessment and types of structured, semi-structured and unstructured measures used to conduct this. Fifty-two percent of participants (n = 27) reported some service disruption (e.g., full closure, substantial reduction in provision, and/or pausing of in person appointments). Waiting times for assessment had become longer for 58% of services (n = 30), due to pandemic-related disruption. Six themes emerged from thematic analysis of open responses: (1) the autism diagnostic pathway, pre-pandemic; (2) initial impact of the pandemic on service delivery; (3) conducting autism assessments during the pandemic; (4) working remotely; (5) improving service design and delivery; and (6) post-diagnostic support. Views about the accessibility, validity, and reliability of conducting telehealth autism assessments were polarized. Some participants considered this efficient, flexible, and adequate; others viewed this as unethical and inappropriate. What constitutes good practice in telehealth autism assessments remains unclear, but there is a general openness to using this method (potentially in a hybrid telehealth-in person model), provided rigor and standardization are enhanced. Conclusions: The pandemic has potentially compounded existing bottlenecks to the autism diagnostic pathway. Future research should seek to improve timeliness, standardization, accessibility and robustness of this pathway, and the validity and reliability of telehealth autism assessments.

Traumatic life experiences and post-traumatic stress symptoms in middle-aged and older adults with and without autistic traits.

OBJECTIVES: Research with younger adults has begun to explore associations between autism/autistic traits and vulnerability to Post Traumatic Stress Disorder (PTSD). Large scale studies and/or examination of age-effects have not been conducted. METHODS: Adults aged 50 years+ from the PROTECT study (n = 20,220) completed items about current and childhood socio-communicative difficulties characteristic of autism. Approximately 1% (n = 251) endorsed high autistic traits, henceforth the Autism Spectrum Traits (AST) group. Differences between the AST and an age-and sex-matched "Comparison Older Adults" (COA; n = 9179) group were explored for lifetime traumatic experiences and current symptoms of PTSD, depression, and anxiety. RESULTS: Almost 30% of the AST group, compared to less than 8% of the COA, reported severe trauma in childhood/adulthood, including emotional, physical or sexual abuse. Elevated current PTSD symptoms were reported by AST compared to COA. An interaction was observed between autistic traits and trauma severity; the effect of level of trauma on PTSD symptoms was significantly greater for AST versus COA participants. This interaction remained significant when controlling for current depression and anxiety symptoms. CONCLUSIONS: The findings suggest that high autistic traits may increase the likelihood of experiencing trauma across the lifespan, and the impact of severe trauma on PTSD symptoms. Older adults with high (vs. low) autistic traits may be at greater risk of experiencing PTSD symptoms in latter life. Future research should test whether the pattern of results is similar for diagnosed autistic adults.

A Meta-analysis of Outcome Studies of Autistic Adults: Quantifying Effect Size, Quality, and Meta-regression.

Longitudinal studies have generally reported poor outcomes in adulthood for the majority of individuals (c.50-60%) with autism. Several factors putatively predict outcome (e.g. IQ), but findings remain mixed. This paper presents an updated meta-analysis of autism outcome studies and extends previous findings with additional analyses (including meta-regression). A total of 4088 records was screened and 18 studies, involving 1199 individuals, were included in the quantitative analysis. Estimated percentages indicated that 20.0% of participants were rated as having a good outcome, 26.6% a fair outcome, and 49.3% a poor outcome. Meta-regression indicated that lower IQ in adulthood was predictive of poor outcome; other meta-regression models did not survive correction for multiple comparisons. Overall, outcomes for autistic people are on average poor, and higher IQ appears to be protective against having a poor outcome. The limitations of current constructs of outcome are discussed.

The Mental and Physical Health Profiles of Older Adults Who Endorse Elevated Autistic Traits.

OBJECTIVES: The mental and physical health profile of autistic people has been studied in adolescence and adulthood, with elevated rates of most conditions being reported. However, this has been little studied taking a dimensional approach to autistic traits and in older age. METHODS: A total of 20,220 adults aged 50-81 years from the PROTECT study reported whether they experienced persistent sociocommunicative traits characteristic of autism. Approximately 1%, 276 individuals, were identified as endorsing elevated autistic traits in childhood and currently, henceforth the "Autism Spectrum Trait" (AST) group. An age- and gender-matched comparison group was formed of 10,495 individuals who did not endorse any autistic behavioral traits, henceforth the "Control Older Adults" (COA) group. Differences between AST and COA groups were explored in self-reported psychiatric diagnoses, self-reported symptoms of current depression and anxiety, and self-reported physical health diagnoses. Associations were also examined between autistic traits and health across the whole sample. RESULTS: The AST group reported significantly elevated rates of psychiatric diagnoses compared to the COA group. Additionally, the AST group showed significantly higher self-reported symptoms of current depression and anxiety than the COA group. However, few differences were observed in individual physical health conditions, and no differences in total co-occurring physical diagnoses between groups. Similar associations between autistic traits and health were also found taking a dimensional approach across the whole sample. DISCUSSION: These findings suggest that older adults with elevated autistic traits may be at greater risk of poorer mental, but not physical, health in later life. Future studies should incorporate polygenic scores to elucidate the possible genetic links between the propensity to autism/high autistic traits and to psychiatric conditions, and to explore whether those with elevated autistic traits experience particular barriers to mental health care.

The Mental and Physical Health of Older Adults With a Genetic Predisposition for Autism.

Autism commonly aggregates in families, with twin studies estimating heritability to be around 80%. Subclinical autism-like characteristics have also been found at elevated rates in relatives of autistic probands. Physical and psychiatric conditions have been reported at elevated rates in autistic children and adults, and also in their relatives. However, to date, there has been no exploration of how aging may affect this pattern. This study examined cross-sectional data from the ongoing online PROTECT study. A total of 20,220 adults aged 50 years and older reported whether they have an autistic first-degree relative. In total, 739 older adults reported having an autistic first-degree relative (AFDR group) and 11,666 were identified as having no family history of any neurodevelopmental disorder (NFD group). The AFDR group demonstrated significantly higher frequencies of self-reported psychiatric diagnoses and a greater total number of co-occurring psychiatric diagnoses than the NFD group. Furthermore, the AFDR group reported elevated current self-report symptoms of depression, anxiety, traumatic experience, and post-traumatic stress than the NFD group. By contrast, few differences between AFDR and NFD groups were observed in physical health conditions, and no differences were observed in the total number of co-occurring physical health diagnoses. These findings suggest that adults who have an AFDR may be at greater risk of poor mental, but not physical, health in later life. Older adults with autistic relatives may benefit from close monitoring to mitigate this susceptibility and to provide timely intervention. Autism Res 2020, 13: 641-654. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals, Inc. LAY SUMMARY: Children and adults with an autistic relative have been found to experience more psychiatric difficulties than those with no family links to autism. However, a few studies have explored what happens when these individuals get older. Examining over 20,000 adults age 50+, we found that older adults with an autistic relative experienced elevated rates of most psychiatric conditions but not physical conditions. Older adults with autistic relatives may benefit from close monitoring to mitigate this susceptibility and to provide timely intervention.

Theory of mind performance in younger and older adults with elevated autistic traits.

Little is known about the impact of aging with Autism Spectrum Disorder on theory of mind (ToM). While ToM difficulties appear to abate with age in older autistic populations, this has yet to be explored in the Broad Autism Phenotype (BAP). The current study examined ToM performance among younger (n = 49, aged 18-46) and older adults (n = 47, aged 60-91) who were classified as on the BAP (younger n = 18; older n = 21) or not (younger n = 31; older n = 26) using the BAP Questionnaire. ToM was assessed using the ecologically valid Strange Stories Film Task (SSFT) and the dynamic Happé-Frith Triangle Animations task (TA). A 2 × 2 analysis of variance examined the effects of autistic traits (BAP vs. non-BAP) and age (young vs. old). For both SSFT and TA, results showed autistic trait main effects on task performance (non-BAP > BAP). Age main effects were observed for some but not all metrics on TA (younger better than older), with no differences in SSFT. An interaction of autistic traits and age was observed in TA Intentionality, with younger non-BAP and younger BAP performing similarly but older non-BAP performing better than older BAP. Results show that younger and older adults with elevated autistic traits show poorer ToM performance. Despite ToM difficulties being common in later life in the general population, this effect was not observed when using a ToM task designed to reflect real-world scenarios. However, results suggest that autistic traits and age could interact to increase risk for poor ToM performance in older adults who endorse elevated autistic traits. Autism Res 2020, 13: 751-762. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: The behaviors and characteristics commonly found in autism spectrum disorders have been linked to differences in understanding social situations. Similar difficulties have also been found in older age. We assessed social understanding in younger and older adults from the general population. Both younger and older adults who report more autism-like characteristics experience more difficulties with social understanding. However, few differences were found between younger and older adults.