Clinical intervention with autistic adolescents and adults during the first two months of the COVID-19 pandemic: Experiences of clinicians and their clients

Abstract

This article describes clinical experiences of therapists with autistic clients during early stages of the COVID-19 pandemic while engaged in remote intervention in Canada. The authors polled their team of mental health clinicians through an email questionnaire and infused their own practice experiences to summarize mental health themes, and adaptation to technology-based intervention. Clinicians shared responses to the pandemic and reported on their transition to remote intervention.

Introduction

By mid-March of 2020, the COVID-19 virus resulted in province-mandated closures of non-essential services shifting therapeutic interventions to videoconferencing or phone sessions. Physical distancing practices and strict rules about staying at home were enforced in Ontario, Canada, and continued until Phase One of community re-openings in mid-May 2020. The Redpath Centre is the largest private mental health organization in Ontario specializing in autism spectrum disorder (ASD) and other neurodevelopmental conditions across the lifespan. Similar to many counselling settings, our team of clinicians adapted quickly to continue supporting clients during unprecedented times. Understanding clinical experiences is of significance as autistic individuals may already be socially isolated (Orsmond et al., 2013) and live with co-existing mental health issues prior to the emergence of COVID-19 (Cage et al., 2018).

Autism and client profiles

Autism is characterized by persistent deficits in social communication and social interaction, and restricted, repetitive patterns of behaviour, interests, or activities (American Psychiatric Association, 2013). Therapists polled at the Redpath Centre see clients who commonly range in age between 15 and 30 years, fell in the average to above average range of intelligence, struggled with planning and organizing, communication, social skills, had difficulty setting personal goals and finding and maintaining meaningful social relationships.

COVID-19 and ASD

Canada Public Health describes ‘Vulnerable Population’ in relation to COVID-19 to include ‘difficulty understanding or communicating; difficulty accessing medical care or health advice; ongoing supervision needs or support for maintaining independence; difficulty accessing transportation; economic barriers; unstable employment or inflexible working conditions; and/or social isolation’ (Canada Public Health, May 2020). Based on the above criteria, it may be inferred that individuals with autism may be a more vulnerable population for COVID-19. Autistic individuals are further at risk as it is often difficult to find appropriate services and supports, and other negative psychosocial factors may be at play. Individuals with autism may have increased immune disorders which may contribute to a higher risk of infection (Eshraghi et al., 2020; Lima et al., 2020). In understanding many autistic individuals have co-occurring mental health issues (Attwood, 2007; Cage et al., 2018; Ghaziuddin et al., 2002; Stoddart et al., 2013), this population may be particularly vulnerable during the pandemic.

In the context of COVID-19 and ASD, Pellicano and Stears (2020) note that it is too soon to understand effects of COVID-19 on people with autism, yet there have been some positive gains in relation to adapting supports to online platforms. They also outline concerns around exclusion from appropriate care, increased mental health issues and economic disparities. A recent study highlighting perspectives of researchers from across the globe cites anxiety, emotion regulation and repetitive behaviours as key concerns in the intersection of COVID-19 and autism (Amaral and de Vries, 2020). An American survey completed by 636 autistic adults reported that 90% have experienced negative impacts of COVID-19 on their home lives (Chung, 2020). Den Houting (2020) described:

It is certainly true that for some autistic people, little in our lives will change as a result of the current situation. In a world that is inaccessible for so many of us, social distancing and self-isolation can be the norm. (p. 103)

Coupled with the recent statistic that 41% of adults with autism reported a disruption to their services or therapies since the emergence of COVID-19 (Chung, 2020), this population is at risk for intensified mental health issues and increased isolation.

Our process of information gathering

Information gathering was a preliminary and brief exploration exercise to determine the effects of COVID-19 in our clinical practices and how our clinicians were adapting to online services. To understand programme effectiveness and how clinicians and clients were coping during the pandemic transitions in and out of lockdown, a brief email questionnaire was sent to our clinical team comprising graduate-trained therapists in social work, psychology, or behaviour analysis. Clinical autism experience ranged between 10 and 30 years. Clinicians practised in both urban and rural settings. Therapists were asked, ‘Have you observed any themes in relation to mental health?’ and ‘Do people still want the service? Are you connecting virtually or by phone? Do you have any feedback on what is working best for your clients?’ The questionnaire was sent to colleagues by the authors, and later analysed by the authors. Responses from clinicians were collected and coded into themes. Information was not gathered from clients due to time constraints while trying to urgently understand the changing therapeutic landscape. Consent from colleagues was obtained and member checking (Rubin and Babbie, 2017) was applied to ensure colleagues’ feedback was accurately captured. Due to the informal nature of the questionnaire, we did not complete an ethics protocol.

Observed themes and recommendations

Clinical observations of increased mental health concerns related to COVID-19

Clinicians observed that some autistic individuals with pre-existing mental health issues struggled more with anxiety disorders, depression, obsessive and compulsive disorder (OCD) symptoms during the pandemic. More leisure time also increased opportunity for rumination. Processing rapidly evolving news and scientific information was an issue for clients. Pre-existing co-occurring mental health issues could be identified as a potential risk factor to overall functioning during the pandemic.

Shifts in practice to address increased mental health concerns

COVID-19 information processing check-ins

It was necessary to assess and process mental health in relation to emerging and sometimes changing public health rules related to the pandemic. When clinicians described behaviours among their clients, some presented as hyper-cautious or overly stringent about ‘rules’.

Continuation of sessions through flexible delivery

One-third of the clinical team cited that clients appreciated the normalcy of having their regular clinician to connect with. Three therapists shared that their clients were participating in sessions from the privacy of their parked cars, thus demonstrating their commitment to sessions and the need for them, despite a non-ideal physical environment.

Comfort or relief in initial isolation

Autistic youth and adults were ‘significantly more likely to never see friends, never get called by friends, never be invited to activities, and be socially isolated’ (Orsmond et al., 2013: 2710), prior to COVID-19. Emerging literature describes social isolation during COVID-19 (among the general population) to be a contributor to increased stress and co-occurring mental health issues (Rajkumar, 2020; Zandifar and Badrfam, 2020). However, in some circumstances, therapists reported imposed social isolation and presented a sense of relief among clients. In a recent UK study of 133 autistic adults’ experiences throughout COVID-19, most reported worsening mental health, although a sizable minority described improvement (Bundy et al., 2021). In our therapeutic observations, the reality that some autistic individuals avoid or are uninterested in social relationships was reinforced. For some clients who previously connected through gaming, these connections continued. Therapists reported that online communities acted as a protective measure in ensuring social connection and a sense of normalcy.

All clinicians surveyed described that some of their clients experienced improved mental health. One clinician shared, ‘it appears that there is more (direct and indirect) evidence of thriving rather than struggling’ in context to physical distancing protocols. Another clinician described autism as a protective factor in initial coping during a time that may be challenging for neuro-typicals.

Shifts in practice to adapt to isolation issues

Challenging the status quo

Despite a potential preference for some adults with autism towards isolation, literature on the well-being of autistic individuals describes the benefits of socializing with others (Jones, 2019). Clinicians reinforced the potential benefits of connecting with family members in their household (where positive dynamics existed), friends or family online and encouraged clients to explore activity outside of their bedrooms daily.

Adaptability to virtual sessions

Clinicians described that some clients who previously engaged in face-to-face therapy were reluctant to transition to virtual platforms for reasons including access to Internet, Internet speed, computer issues, Internet security concerns, physical space and privacy concerns, distractibility, eye contact, difficulty adapting to new routine and change in the therapeutic relationship. Despite autistic individuals being known for their comfort with technology, some preferred phone over video. One therapist remarked that her adolescent and young adult clients were more open to videoconferencing platforms than her middle-aged and senior clients.

More than half of the professionals surveyed reported a decrease in the number of clients seen. This decrease may relate to preference for face-to-face meetings. Clinicians described punctuality issues and missed appointments without advance notice. Some therapists spoke of the concerns about struggling with video ‘freezing’ or lagging during critical moments in clinical encounters and distracting from the clinical issues at hand.

Shifts in practice to adapt to virtual services

Platforms for communication

Therapists offered flexibility with both telephone and virtual supports. Therapists described that some clients had no desire for a visual mode of communication. Absence of visual cues presented as a challenge for some of our clinical team that usually rely on these cues to best understand their clients. Clinicians reported scheduling their days differently to accommodate the strain and learning curve of adjusting to tele-practice.

Distractibility

Setting boundaries around clients engaging in distracting on-line activity was identified as another important factor in transitioning to remote services. In these circumstances, discussing expectations upfront helped clients.

Support for therapists

Increased anxiety for clinicians around logistical and transitional issues was best remedied through open sharing during monthly professional practice team member calls. During these 1-hour video-conference meetings, clinicians had time to share their advances and struggles supporting their clients during a time of great change. Colleagues offered practical information and encouragement to one another.

Summary and conclusions

Rapid change requires rapid response. As such, a number of practical implications emerge as there is less time to research and gradually implement ‘best practice’. COVID-19 poses a new problem in society and there are no known studies to date that outline how to best support adolescents and adults with autism during this global crisis. This preliminary discussion of the response of clinicians serving youth and adults with autism offers an initial glimpse into practice issues. Formalized qualitative studies on the effect of the pandemic on individuals with autism are imperative to support this vulnerable population. Support for increased problems with isolation, mental health and adaptation to technology is needed. Analysis of the family and care-giver experiences from a family systems perspective is essential to better comprehend isolation and mental health dynamics. Ongoing research and training for clinicians to best support clients is also essential. Longitudinal studies to better understand the lasting effects of pandemic disruption in autistic individuals’ lives will benefit the autism community.