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.

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.

"This may be a really good opportunity to make the world a more autism friendly place": Professionals' perspectives on the effects of COVID-19 on autistic individuals.

Background: The COVID-19 (C-19) pandemic affects everyone. Autistic individuals may be at increased risk of experiencing difficulties coping with the impact of C-19 (e.g. due to unexpected changes to usual activities and routines, and the general sense of uncertainty). This preliminary study gathered the perspectives of health and social care professionals, and researchers, about: (1) vulnerability factors for coping with the pandemic; (2) the impact of the pandemic; (3) service provision during the pandemic; and (4) interventions to support reintegration during and post the pandemic. Method: We conducted an online survey, comprising Likert-scale and free text responses. Quantitative data were analysed descriptively, and qualitative data thematically. Results: Thirty-seven participants, working in clinical, education and academic settings with autistic individuals, completed the survey. C-19 had substantially impacted service provision, causing major disruption or loss of services. Thematic analysis indicated six overarching themes: (1) vulnerability factors for coping with C-19 and lockdown; (2) positive and negative impact of lockdown (for autistic individuals, families and professionals); (3) public health response to C-19; (4) service provision during the pandemic; (5) inequalities; and (6) looking to the future. Conclusions: Professionals, across disciplines and settings, must now work together with autistic individuals and their families, to understand the impact of these extraordinary circumstances and develop ways everyone can be supported more effectively.