‘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

Costs

A few participants, particularly service providers, indicated that some groups of autistic people may be partially or completely cut off from accessing services delivered via telehealth due to digital poverty, a term covering situations where people cannot afford mobile or broadband data to meet their needs. Hence, there is a complete cut-off in communication. This was primarily expressed by service providers, perhaps because our study, conducted remotely, selected for patients who did have access to a telephone, a computer and/or the Internet. Providers attributed this to lacking sufficient hardware or reliable Internet connections:

First of all access to computers for some people – there is such thing as ‘digital poverty’ – some people might not have laptops. But, luckily, a lot of people did. Some didn’t. And it was really interesting because it opened it up to people who’ve never came to our service. And then people who have been in our service for a long time didn’t. (CLIN006)

However, some participants indicated that accessing their appointments via telehealth technologies meant they could save money, for example, by not having to pay for parking or train tickets, or not having to take time off work, as they were able to fit their appointments more flexibly into their working day. This also served to reduce stress, as one autistic participant explained:

I’m very much in the freelance industry, and so, me taking time off means I lose money, which is obviously going to be a source of anxiety anyway. But also, it just means that logistics – for me, if I was at work and I needed an appointment, I wouldn’t have my car and then I’d have to sort out or change my routine, and, as an autistic person, it’s a huge change to my routine that I don’t like, I don’t want to deal with. It kind of removes that stress. (AUT008)

Unsuitability

Autistic participants, family members and providers agreed there were some services and situations where in-person contact was more appropriate than telehealth. Several participants thought that for highly distressed people, such as those experiencing suicidal thoughts, in-person contact was essential, as one clinician put it, ‘Just the idea that someone’s talking about having suicidal thoughts and then the whole connection drops- It really needs to be very reliable, because otherwise you’re just left hanging there, thinking: “What on earth is going on?”’ (CLIN001).

This linked to other mental distress-related emergencies, such as self-injury, as an autistic participant described: ‘Where there’s things like self-harm involved – I think somebody needs to see it, you can’t describe it’ (AUT008).

Indeed, remote communication had the potential to make judging and communicating distress harder. Although anxiety was reduced for some participants if they did not have to come into the clinic, possibly leading to better communication, some participants felt that telehealth made identification of true levels of need more difficult, as compared to in-person interactions:

It caused less anxiety because you’re in your own home and you can just relax, without all the environments being so chaotic and it being in a new place. But then, sometimes, it’s hard because they don’t really see the true you. Because you kind of zone into your space. When you’re in person, they actually see the true you. (AUT002)

This was relevant to both therapeutic and diagnostic services. Within the latter, service providers mentioned reduced ability to observe behaviours perceived as helpful for the diagnostic process: ‘We lost a lot of information, and we just had no sense of what it felt like to be with that person in the room’ (CLIN003). However, upsides were also acknowledged, such as finding home environments a novel part of the assessment: ‘Some people’s bedrooms were really revealing, but that was relatively rare’ (CLIN003).

The fragility of the interaction over telehealth was a prominent concern. For some participants, there was a sustained background awareness the clinical interaction could cut off at any point. Both the potential and the reality of this increased distress, illustrated by an autistic participant: ‘If there’s a critical point, you can’t respond back via telephone. You’re cut off, and you can’t phone them back because they literally cut you off’ (AUT003).

Linked to medical emergencies was the unsuitability of telehealth for some aspects of physical healthcare. Several participants suggested that primary care appointments crucially required in-person care for autistic people because, for example, general practitioners (GPs) were able to visually gage difficulties the patients themselves may not have been aware of, which could be more difficult, if not impossible, via telehealth.

Several family members highlighted that the people they supported who had additional needs, such as an intellectual disability, were entirely unable to access any form of remote communication. Therefore, this form of service delivery was inappropriate for the autistic person’s access needs:

I know that my sister would not be able to communicate her needs fully so this type of service is not really a viable option . . . My sister always finds it hard to communicate her needs in a comprehensive manner and can talk around subjects she does not want discuss, such as pain. (FAM005)

Finally, delivery via digital technology was thought to be sometimes inappropriate for cultural, religious or social reasons, pointed out by a clinician: ‘There are cultural barriers to the use of technology. We have a very large [Orthodox] Jewish community in the borough, and they don’t use any technology at all, so obviously they can’t engage on that kind of platform’ (CLIN004).

Skills and perception of technology

Some participants were apprehensive accessing or delivering services via telehealth. Some autistic participants highlighted unease with accessing unfamiliar platforms, facing too many unknown steps, and needing support to do this. One family member described this:

The fact that he knows that it’s not just a case of phoning up and making an appointment, it’s the case of phoning up to make an appointment and then having another phone-call. There have been times when he hasn’t felt great, but he’s just gone, ‘I’ll be fine’. And I know it’s because of having that thought of having another telephone conversation. It’s just put him off. (FAM004)

Healthcare professionals were also reported to struggle with aspects of technology. This acted as a barrier to contact with the patient, as the focus ended up being on getting technology to work, rather than on developing rapport via a different method:

The person [i.e., clinician] who I was trying to speak to wasn’t very tech savvy and couldn’t get the meeting to work . . . They seemed to fiddle around, trying to sort it out and their focus was very much on the technology, rather than the problem. (AUT010)

Service providers sometimes felt they/their colleagues held negative assumptions about what delivering services via telehealth to autistic people would be like:

We had assumptions. So, we kind of thought: how are we going to do this?! You know when the pandemic started. How is this going to happen? . . . But it was actually so much better than we thought. (CLIN006)

Others pointed out physical contact and being able to see visual cues was vitally missing and that this reduced the quality of the interaction between client and clinician, as one private psychotherapist described:

Actually they miss being in front of me. And I think there’s something, I don’t think we have a word for it in our language, but there’s something about being together in a space, where we co-create, that doesn’t happen online. (CLIN001).

Autistic participants also highlighted concerns around privacy, online security and data protection. One participant pointed out that they were unable to engage in video-calls, having to choose telephone contact instead, because they lived with their parents and had no privacy inside the house. A few participants were concerned how their data would be used, concerned that they could be filmed or very sensitive data shared with others: ‘Imagine breaking down and crying to a therapist via Zoom. I would have to end that call, rather than be filmed in distress’ (AUT009).

Remote interaction and autistic communication styles

Several elements reported by participants, related specifically to communication as autistic individuals. For some autistic participants, the loss of visual social cues was reported as a negative development, making communication more difficult, as one participant described: ‘Socially, I can use some visual cues, and the phone takes that away’ (AUT001). Another participant commented, ‘It comes down to audio processing disorder. My memory around speech is near zero. I usually lip read’ (AUT003). Yet others found the loss of visual cues via telephone a positive, such as not having to cope with eye contact, and, as one participant described, ‘I never think I look appropriate for how they want me to look. At least on the phone I don’t have the ‘Oh my God, I don’t look like I’m in enough pain . . .’. At least it’s just about how I sound’ (AUT007).

This links to many autistic participants indicating a continual concern and self-consciousness of their behaviours and speech, in terms of being misperceived or misunderstood in telehealth interactions. Some worried about stronger emotions being misperceived as aggression, and there was an overall sense of mistrust and fear of services and clinicians. One of the participants compared this mistrust to that experienced by LGBTQ + people within the healthcare system in the recent past:

There is a fear of doctors because doctors are trouble. . . .Because they’ll often have declared you to be bad, or you’ve got a problem or whatever. It’s not unlike – I mean, I am gay – it’s not unlike the way it used to be, I think, for gay people and doctors. It was like: don’t go near doctors. Because you can’t trust them. (AUT011)

Support from others

Prior to the pandemic, some autistic people, through self-report and family member report, relied on formal and informal support from family members, social workers, friends and partners, to access or prepare for appointments. For some, parents were fully in charge of the autistic person’s communication, for example, due to the person’s intellectual disability. Others gave consent for a parent to be in charge. Rehearsing what one would say in an appointment and finding the presence of a loved one reassuring were other reasons mentioned. For some of the participants, this need for support heightened over telehealth delivery, with one autistic person completely disengaging:

It put up more of a barrier between [participant’s son] and the healthcare provision. So, because I was the one that did all of that, and he just completely backed out of it, he didn’t even want to be co-consulting or anything, it was just me doing it. (FAM002)

Others found it more difficult to provide this support while aware it was much needed, as one parent described: ‘I’m with him when the conversation takes place, and, therefore, I can prompt him, and I can open up different parts in the conversation. But you can’t do that over the phone’ (FAM003).

Yet, others became sole communicators for their autistic family members, with services relying on their reports, in terms of both symptoms and situations, such as formal safeguarding assessments. This left some family members feeling concerned about the responsibility they had: ‘The responsibility was huge in terms of [communicating daughter’s needs to the doctor]. And, for me, English is a second language as well. Describing things accurately, the fear of making a mistake . . .’ (FAM001).

Human(e) contact

Across the board, autistic participants and family members supporting autistic adults, emphasised the value of human(e) contact. This involved two main elements. First, a few participants highlighted that remote delivery reduced the personal and reassuring aspects of support and made them feel less able to share themselves: ‘I am getting used to it, but it does lose a bit of the informality. It is more difficult to talk about some things’ (AUT004).

Second, kindness, patience and willingness to learn were highly valued when encountered, and, for some participants, these ways of engaging and behaving were what made telehealth delivery either effective or ineffective, as one autistic person highlighted:

I think what it really comes down to is the kindness and patience and empathy shown by individual staff members, whether they are medical, or administrative. Allowing people to feel comfortable, so they can say things, maybe they never said to anybody. . . But that’s more of a cultural attitude thing, rather than something you can just put into place. (AUT007)

This was supported by a carer of an autistic person:

If you’re going to do remote calling, you need to establish empathy . . . If you’ve got people who are in any way authoritarian or have some kind of inspector mode to their personality, there is no way they can work with anybody who’s autistic. The key to this is not so much the technology. It’s the individual who is using the technology, in my view. (FAM006)

Pro-activity

Most autistic participants and family members indicated that to access or engage with any telehealth-delivered service, autistic people and in applicable circumstances their families, had to be proactive in their communication, pointed out by one family member, ‘. . . the well-being of autistic young people very much depended on the strength of advocacy of their carers. There was very little proactive checking-in by services’ (FAM001). This included calling services multiple times; inquiring about test results; and, during interactions, actively offering up information as clinicians did not ask questions that would elucidate these answers.

Across participant groups, this need to be proactive was seen as a significant barrier to healthcare and support. Reasons for this included being already in high distress or highly anxious and finding it difficult to self-advocate for one’s needs; not knowing what was required to obtain a service; and autistic communication differences:

I think one of the things that struck me is that is that it requires a certain element of pro-activity to actually get involved with services. If he’d been more proactive maybe he would have rung up the social worker and said, actually what support can I get? You know, that’s not on his radar. (FAM003).

Feedback

The quality of communication between clients and services was frequently cited as important. It was highlighted that it was essential to elicit, listen to, and attempt to implement autistic people and family members’ feedback in service design and delivery, as urged by one family member:

I think the services themselves could or would be wise to seek feedback from the users; we’re never asked or rarely asked ‘how was the service for you?’ So, both at the point of setting up any form of consultation/communication, if there is a possibility, they could ask what the best way for everybody would be, including for them. (FAM001)

In relation to this, one service provider described the value of peer mentors:

We’ve got peer mentors, so people who are autistic and they facilitate groups with us, together. And they’re amazing. Their feedback is really important to us. (CLIN006)

Decreased flexibility of the healthcare system

The use of telehealth saw an exacerbation of barriers that were already present in the system. Some participants highlighted that the already over-burdened system increased in its rigidity, and fracture. Given most autistic participants had multiple health conditions, they reported there was lack of communication between the various services they were accessing, as pointed out by one autistic person: ‘The professionals, they don’t communicate with each other, either by letter or phone call. It’s not happening and, since COVID, it’s just gone off a cliff’ (AUT003).

The health system was also perceived as goal-oriented, and rigid, rather than holistic. This linked to the criticism by some autistic people and family members, that the services felt automated and impersonal: ‘It’s focused on specific tasks, and it doesn’t give an overview of the whole person. It’s very focused on one particular problem. Most people have got multiple problems’ (AUT010).

Some autistic people and parents also felt unable to voice their preferences and concerns, as there was a perception that either there was no time for this, or that it would be perceived negatively, as non-compliance:

I just get the sense that it would be a problem. It would be trouble . . . You know, we don’t run the [general practice] for your convenience, basically. We run it for the doctor’s convenience. So, there was kind of a sense that asserting a need to see a doctor at a particular time was not something you could do. (AUT011)

Increased flexibility of the healthcare system

Although there were some exacerbations of pre-existing issues, some elements of telehealth digital delivery were seen in a positive light. This included well-run online (booking) systems, which increased flexibility of access, allowing patients to manage their appointments, test results and medical documents, and being able to communicate via writing, such as by e-mail. Considering many autistic participants struggled with telephone contact, for some, this addressed the difficulty.

In addition, the increased use and acceptance of online digital communication aspects, such as the sharing and creating photographs, videos, recordings and applications (e.g. for measuring blood pressure), made some participants feel they could communicate more flexibly, effectively and accurately, than just by verbal language alone. An autistic participant, for example, explained: ‘I was asked about my blood sugar readings. I have an app which makes a spreadsheet, so I just e-mail it to my specialist nurse. This is more precise than just saying if they are good or bad’ (AUT001).