‘The key to this is not so much the technology. It’s the individual who is using the technology’: Perspectives on telehealth delivery for autistic adults during the COVID-19 pandemic

Abstract

The COVID-19 pandemic prompted a large-scale move to remote delivery of healthcare services. However, little research has directly explored telehealth experiences of autistic adults, a population strongly affected by health inequalities and care access barriers. This study sought telehealth experiences of 11 autistic adults (aged 27–67 years), seven family members/carers (aged 44–75) reporting about autistic people and six service providers. In-depth qualitative interviews were conducted with all participants, which were then thematically analysed. Two over-arching themes identified were technology aids communication and access – except when it doesn’t, and in/flexibility, with a number of sub-themes. The themes, on one hand, highlighted positives of telehealth delivery, including easing some aspects of communication and decreased stress and, on the other hand, negatives, such as increased rigidity of the healthcare system, amplifying pre-existing barriers. Considering autistic people experience barriers to accessing healthcare, this study highlights such barriers could be, in some instances, addressed via remote delivery, as well as possible limitations of telehealth for some autistic adults. Lay abstract The COVID-19 pandemic meant that a lot of healthcare services had to move online, such as to video-calls, or to telephone. However, not many studies have looked at how autistic adults feel about this kind of service delivery. It is important to know this, as autistic people may have poorer health than non-autistic people, and they may also struggle to access services more than non-autistic people. This study asked 11 autistic adults (aged 27–67 years), seven family members/carers (aged 44–75) reporting about autistic adults and six service providers about their experiences of accessing or providing a telehealth service. These experiences were collected through interviews, which were then analysed through thematic analysis. Two main themes were: technology aids communication and access – except when it doesn’t, and in/flexibility. The themes pointed out some positive aspects of telehealth delivery, including improved communication and decreased stress. The themes also pointed out negative aspects of telehealth, such as increased rigidity of the healthcare system, amplifying pre-existing barriers. Because autistic people have many barriers to accessing healthcare, this study encourages researchers and healthcare providers to think about how such barriers could be addressed through telehealth, and about the possible limitations of telehealth for some autistic people.

Lockdown Experiences and Views on Future Research Participation of Autistic Adults in the UK During the First 6 Months of the COVID-19 Pandemic

“…To our knowledge, our results are comparable to findings of four other studies that reported qualitative data from open response survey questionnaires 15 , 20 , 25 , 27 and in-depth interviews with members of the autistic community in Australia, 16 the United Kingdom, 29 and Sweden. 23 Similar to our study, others have reported a wide range of positive and negative effects of national lockdowns in everyday experiences of autistic groups in the United Kingdom, Belgium, the Netherlands, Sweden, Spain, Italy, the United States, and Australia during the first months of the COVID-19 lockdown.…”

“… 15 Further, the rapid replacement of face-to-face services for online/telehealth represented a unique opportunity to improve services' reach and overdue adaptations to the needs of the autistic community. 18 , 29 However, there has been less research in relation to the implications of the pandemic in relation to the conduct of future research with the autistic adult population.…”

Evidence from the Autism Transitions Research Project (2017–2022): Capstone review and services research recommendations

“…As a case in point, emerging evidence shows that access to autism‐related services was disrupted during the COVID‐19 pandemic across sectors including community services (Bal et al, 2021; Bhat, 2021; Maljaars et al, 2022), employment opportunities and the opportunity to work from home (Schall et al, 2021), services and mental health support for primary and secondary students (Hurwitz et al, 2022; Jeste et al, 2020; Monahan et al, 2021; Neece et al, 2020), and health services (Bhat, 2021; Chung, 2020; Drum et al, 2020; Jeste et al, 2020). Barriers to services included staffing shortages, closure of sites and service providers, inability to work from home (Desroches et al, 2022; Schall et al, 2021), lack of educational support, and barriers to telehealth as an accessible or effective service modality (Ali et al, 2022). Our ability to address these challenges is again hampered by siloed systems of data collection and reporting.…”

Virtual group-based mindfulness program for autistic women: A feasibility study

“…Benefits associated with online health services for autistic adults have been described in recent literature. 39,40 Such benefits included reduced travel, improved comfort (avoiding crowded waiting rooms with sensory overload), and ease of communication. However, there are also several disadvantages associated with virtual delivery of supports and programs to autistic adults that should not be disregarded.…”

“…Disadvantages include technology issues, environmental distractions, and reduced engagement. 24,39,40 Further, virtual delivery excludes those who may require support with technology and do not have this support available to them, as well as those who do not have the access to a computer, tablet, phone, or Internet. It is important to recognize that online delivery of mind fulness as well as other interventions may benefit some autistic people, but not all.…”