Considering autistic patients in the era of telemedicine: the need for an adaptable, equitable, and compassionate approach

Mode of consultation

Telemedicine may offer significant benefits for autistic people. Remote consultations can take place in a familiar environment, and avoid the social and sensory overstimulation experienced on public transport or in waiting rooms.⁸ Therefore the COVID-19 pandemic may have encouraged positive, inclusive change.⁸ A prior systematic review supported the use of telemedicine for autism diagnostics and interventions for autistic individuals.⁹

However, while autistic individuals have many strengths, there are also areas of life that can be more challenging. Using the telephone is difficult for many autistic adults.^5,10 An inability to analyse non-verbal cues creates a degree of uncertainty and discomfort, which can result in reduced information transfer. Non-speaking autistic patients may need to rely on AAC or proxy communications via caregivers, which may be a particular challenge over the telephone. SS and MD personally find telephone calls anxiety-provoking. In contrast, LJD has found that telephone consultations can be used as part of a process of building a relationship with autistic patients, with a real benefit to discussing and signposting help, often alongside access face-to-face care.

Video calls may be equally challenging for autistic adults, as they ‘ experience more stress, have less capacity to interpret verbal and non-verbal cues, and feel less empowered to participate ’.¹¹ This has been observed in clinical practice by LJD, and it can be exacerbated by the tendency to switch within a consultation to video where it may be unanticipated as an option by the patient.

Appointment booking

In a survey of autistic adults, 62% reported that they had difficulties booking a GP appointment by telephone, compared to only 16% of non-autistic respondents.⁵ This disparity creates issues with equitable access to primary healthcare from the outset. It is therefore important to consider how we book appointments for our patients and to consider non-telephone options such as online booking platforms.

Appointment timing

In the triage type (or ’doctor first’) approach, where a list of calls is generated for the doctor without specific time slots, patients are less likely to be given an appointment time, but rather a general time of day for the call (‘morning’ or ‘afternoon’). This can cause specific access issues for autistic people, where they do not have time to prepare for the call or indeed suspend what they are doing for enough time to focus exclusively on that call.

Preparation and processing

Another key aspect of remote consulting is the loss of both preparation time and the space that is normally provided by the process of attending in person. Answering a telephone call does not provide the same scaffolding. This can be exacerbated by not knowing what time to expect a call.

Communication difficulties are compounded by sensory challenges for autistic people.⁵ A supermarket or busy office can be a good example of a particularly challenging sensory environment, with bright lights, loud sounds, and many people nearby, yet patients may be unexpectedly called by their doctor while working or shopping.

The additional cognitive load and anxiety generated by a telephone call, particularly if unexpected, can leave an autistic adult unable to function as usual for some time. Moreover, during a consultation, some autistic patients may need extra time to process unanticipated questions due to difficulties in executive functioning.

Interoception and sensory differences

Some autistic people have a reduced sense of interoception, or the perception of physiological feedback from the body.¹² This can mean that patients have a very different experience of bodily sensations. Explaining this can be complex, and some patients may not have insight into this difference. As an anecdotal example, some patients report being very unwell with conditions that would be expected to cause significant pain, but are dismissed as they do not experience, describe, or show pain in a pattern that a doctor would traditionally recognise. This will be even more challenging during a telephone discussion for both the patient and doctor where there is an absence of physical cues, and as such we would suggest a lower threshold for face-to-face consultation.