Effectiveness of virtual assessment and care reviews for autistic people.

Introduction

It is clear from research, anecdotal evidence and first-hand accounts that many autistic individuals experience difficulties in booking, attending and fully participating in healthcare assessments and reviews. Some of these difficulties can be exacerbated by anxieties around face-to-face consultations due to communication and sensory issues.

With the advent of new technology, from easier access to telecommunications through to virtual consultations via the internet, there are alternatives being developed to traditional approaches in health care.

The impact of the COVID-19 pandemic has accelerated the growth of digital and remote consultations, assessments and reviews. Much of this has been borne out of necessity as the majority of face-to-face consultations were suspended due to lockdowns and enforced social distancing, to reduce the spread of infection and reduce footfall to health care providers. It is highly likely that remote consultations will continue to be widely adopted post pandemic as convenient and low cost alternatives to traditional consultations.

How Effective are Virtual Assessment and Care Reviews for Autistic People?

I am not an academic, in the literal sense, but I have experienced first- hand the pros and cons of this new approach to healthcare consultations and monitoring, as the parent of a 22 year old autistic daughter who also has significant physical, mental health and disability needs.

So what are these alternatives to face to face consultations?

The two main tools for the health care professionals are :

· Telephone consultations

· Video calls

Telephone consultations have been used in general practice for a number of years, but it is a relatively new phenomena to use these in general medicine or mental health services. I have already mentioned the economic and convenience of this approach, but studies such as those conducted by Hewitt, Gafaranga and McKinstry in 2010, have demonstrated that patients tend to disclose fewer medical issues over the telephone than during face-to -face consultations.

Video calls, whilst also more economical and convenient for professionals, rely on a high quality internet connection, the reliability of which can vary widely between both households and healthcare providers. Plus professionals have to rely on basic IT literacy for effective client/patient compliance and engagement.

If you factor autism into this equation, a number of additional variables come into play. As mentioned earlier, autistics have differences in social communication, social interaction and sensory perception. Some of these differences may be either exacerbated or reduced when autistic individuals have access to virtual assessments.

It is an old adage that “when you’ve met one autistic person, you have met one autistic individual.” Everyone who is autistic will present differently and in addition, every autistic individual’s ability to communicate or interact at any given time, may be affected by sensory or environmental factors.

Telephone consultations

In 2021, Philppa L Howard and Felicity Sedgewick, from the University of Bristol, produced an article entitled “Anything but the phone” looking at preferred communication preferences amongst autistic individuals.” They concluded that whenever contacting unknown people, organisations or health professionals, that emails were preferred rather than face to face, or especially, phone calls.

Evidence from a number of other sources and studies over several years have suggested that many autistic people prefer written methods of contact such as reports, letters, and especially texts and emails. Why is this?

My daughter introduced me to the concept of “wow” words in a sentence. This means in essence splitting down a sentence or phrase to its component parts and focusing on the important words. Whilst some autistic individuals are non verbal or have significant impairment in communication, most autistics have difficulties in the social aspects of communication such as tone, pitch, context, comprehension etc.

These difficulties in communication may mean that they find difficulty in focussing on the precise message, as they seek to decipher the multiple “filler” words in a sentence. By the time that sentence has been stripped to its bare essentials, it is likely that the second and third sentences may be already in full swing. The result can be a confusing mixture of words and phrases, which may easily be misconstrued or taken out of context. This lack of processing, control, thinking time, coupled with possible sensory issues, such as noises on line or from the home or health care environment makes effective communication very difficult.

Conversely, some individuals, including autistic individuals, especially those under stress or anxious, may have a tendency to interrupt, talk over, or “go off on a tangent.” Consequently, it can be very difficult for the health care professional to find out the “real issues” an autistic individual has, amongst a cacophony of information; leading to the health professional having to now be the individual doing the decoding!

Sometimes the effects of this misunderstanding can be very distressing for the autistic individual. Imagine an autistic patient being told over the phone that a biopsy is non-cancerous, for example, but not hearing or receiving that important word “not!” Truly devastating!

Another difficulty in this area is that many autistics find it very difficult to talk to a stranger or a professional on the phone. My son, for example, is 24 years old, has a degree in psychology and is a qualified teacher. Yet despite his intellect, due to his autism presentation, he finds it very difficult to talk to parents, doctors or even order a taxi on the telephone. With practice, it has become easier for him to order a taxi, as to an extent, this can be a rehearsed script- a taxi at X time to go to Y for Z time etc. However, most professional telephone calls are not scripted and rely on creating and reacting to a fluid, changing dialogue, whose content and direction is variable and of uncertain duration.

Anyone who has tried booking a GP or hospital appointment over the telephone , knows how stressful and time consuming that can be. First, the potential long delay to get pass the engaged tone, or speak to someone or leave a message, then having to endure the worse rendition of Greensleeves since Tudor times when put on hold, and then the constant reassurances that “your call is important to us!” Once you throw autism into the mix, with probable sensory and processing issues, it is little surprise that the majority of autistic people become very anxious and reluctant to use this form of communication.

The uncertainty of call back timings can also cause extreme anxiety amongst autistic individuals. Generic messages like “morning” or “ afternoon”, without being more specific can be very stressful. It can feel extremely debilitating being in a form of limbo waiting for the phone to ring. This generic approach does not support autistic individuals in any way, as they may not have sufficient time to prepare for the call or engage in a stress relieving activity whilst waiting. I have already mentioned processing time for autistic individuals, this can be exacerbated by the uncertainty of when to expect a call.

Sensory issues may also come into play, if the time of the call is unexpected and the autistic individual may be shopping or at work, plus possible privacy and confidentiality concerns.

One aspect of autism largely overlooked when considering sensory differences is the sense of interoception -how the individual perceives physiological feedback from the body. It can be very difficult for many autistic individuals to describe concepts like pain, how they are feeling, or even experience or show pain in a manner a doctor can fully understand. My daughter, for example may describe that she has a headache in her tummy-which might be better to describe to the doctor visually by pointing to the exact point of pain in a visual or face to face consultation.

Before going on to discuss video calls, let us consider some strategies that might make telephone consultations potentially more autism friendly:

Making Reasonable Adjustments:

Facilitating access for telephone consultations

· Patient notes to be flagged with autism diagnosis & specific strategies, personal to the individual concerned-By so doing, the clerical and administrative teams, as well as clinicians, are in a better position to offer best care for their autistic patients

· Allow autistic patients to request the most accessible type of appointment for their individual needs, to reduce barriers to access-As mentioned earlier, some individuals may not cope well with telephone calls, so alternatives may need to be offered

· Offer online booking-For those who may not be able to cope with booking appointments by telephone

· Offer longer or double appointments-Many autistic individuals may need longer appointment times due to their specific communication needs

· Offer clearly defined appointment times-Allows sufficient preparation time, and ensures optimal environment for telephone consultations

During Consultation:

· Allow extra processing times-Due to the nature of their autism presentation, many autistic individuals may require extra time to process information (remember “wow” words!)

· Avoid rephrasing questions, unless directed by patient-Rephrasing may introduce possible confusion to the autistic patient, as another set of information needs to be deciphered!

· Using clear unambiguous language-Always use language appropriate to the individual. Some are well-read, and may be almost encyclopaedic in their knowledge, but others may not be fully capable of interpreting anecdotal language .

· Adding extra checks/reflective listening-It is always good practice to employ reflective listening approaches as standard in healthcare provision. This enables the professional to evaluate the patient’s understanding and ensure cooperation and compliance. This is particularly important over the telephone where environmental and sensory considerations can be barriers to effective listening, especially when coupled with the heightened anxieties that many autistic individuals experience at any given time

· Avoid too much medical jargon or complicated phrasing-Medical abbreviations, especially over the telephone, where individual letters can easily be misheard or misinterpreted, or complicated or convoluted medical phrasing can be considerable barriers to effective dialogue with autistic individuals

Following telephone appointment

· First instance, consider text messages to summarise information and outline immediate actions

· Letter or email to patient to provide more detailed information, reinforce immediate actions and outline next steps and follow up appointment details

· Collectively, both of these actions can help ensure effective communication of key outcomes

Video consultations

In his report “The Impact of Austerity on Mental Health Service Provision: A UK Perspective” (2018), I Cummings draws attention to the fact that mental healthcare has been under considerable strain for over a decade. Recently, this pressure has increased exponentially during the COVID-19 lockdown restrictions, with Bloem, Dorsey and Okun and others arguing that this crisis has been the “catalyst for telemedicine.”

Over recent years, particularly during the COVID-19 pandemic, video calls have become an increasingly routine part of everyday life. For many patients, however, video calls with general practice or mental healthcare, remain relatively novel, and for some a disconcerting experience, particularly amongst older age groups.

Whilst video may be equally challenging for some autistic adults, the vast majority of autistic individuals much prefer to utilise video over telephone consultations; this appears to be supported by all recent research in this field.

It is also useful to note the clear dichotomy of the effectiveness of video consultations between young and old patients and those autistic individuals who possess a learning disability and those who are not intellectually impaired.

From the limited research in this area, so far, it is therefore essential to identify those attributes that are more suitable or less suitable to this new approach to healthcare assessment and review:

These include:

· IT literate and with suitable equipment-Considerations include: older people who may struggle in this regard, patients with a computer, tablet or smart phone that cannot attend the clinic in person for whatever reason

· Anxious/avoidant/dissociative- e.g. patients with PTSD, agoraphobia, claustrophobia, OCD (concerns about cross contamination (COVID etc), health-related anxiety, socially anxious, shielding

· Expressed preference-Staff to NOT make any assumptions, patients preferring face-to-face interventions to be accommodated on a case-by-case basis. Always be led by patient

· Teenagers/younger adults-Older teenagers, students and young adults have been brought up with technology, and it may be more easily accessible by them

· Living in isolated or rural settings without good access to transport-Consider rural patients, with limited access to public transport (may have to spend more time travelling for a relatively short appointment); also consider childcare issues

· High risk to self/others-e.g. those who are shielding or have a risk of violence

· Autism spectrum disorders, with or without a learning disability- in a study by Painter, Turner and Procter (2021) they argued that “many autistic service users, prefer to utilise video for assessment over leaving home to attend face-to- face appointments in a clinical workplace.” However, autistic individuals with an associated learning disability, were found to struggle without support to use the software. Indeed some “requested not to have online consultations, preferring to wait until face-to- face is permitted.” Others found it “extremely difficult to function well on online consultations.”

Suggestions to help patients get the most out of virtual appointments

· Offer informed choice to assist patients to decide what is best for them at a particular time-phone or video: It is important that staff are flexible and listen and respect the patient’s individual wishes. Some autistic people prefer telephone appointments because it is easier to concentrate without having to look at someone’s face, but more prefer video calling, especially if there is chat function or captions so that there is written information to support and enhance communication and they can type, rather than verbalise their concerns

· Encourage the patient to make a list before the call: This may help the patient to state their main concerns, as these may become muddled or forgotten during the conversation

· Support the patient to find a quiet place and appropriate time for appointment

· Support the patient to share their main concerns: Ask the patient if there are any special considerations that would make the communication more effective, such as “would it help if I spoke at a slower pace,” try to avoid too many filler words or jargon, provide opportunities for reflection and feedback to confirm understanding

· Provide sufficient time for patient to make a record of conversation: Support then to take notes if required or set up their device to record. It is easy to forget information or misinterpret information when the patient is feeling anxious or upset

· Conclude with a summary or action plan: At the end of the appointment, highlight the main points of the conversation and encourage patient to reflect these back and provide opportunities for asking questions or airing concerns

Implications for autistic patients

Earlier, I highlighted the particular barriers to accessing effective healthcare provision for autistic adults. Last year I was privileged to be a co-facilitator, with the National Autistic Society of the Oliver McGowan Mandatory Training Trial in Learning Disability and Autism. More recently, I have been co-facilitating in the Train the Trainer in Autism for Staff Working in Inpatient Mental Health Settings. These initiatives will enable greater acceptance and recognition of autism by healthcare professionals. Bear in mind, many autistic individuals that come into your services may also be undiagnosed, or choosing not to be assessed for a diagnosis.

Autism is NOT a mental health disorder. It is a neurodevelopmental difference. Autistic individuals, like myself, are wired differently. In effect we have a different processing system to neurotypical individuals.

Before concluding this presentation, I ask you to reflect back upon the specific areas of difference of autistic individuals and how best to support them whether in a virtual setting or face to face:

· Communication

· Sensory Processing

· Predictability and Control

Consider the following actions:

Communication

· Allow text-based e-consulting before the consultation

· Provide written instructions or follow-up advice after consultation

· Use clear, unambiguous language

· Online appointment booking

· Allow time to process

· Consider longer appointment slots

· Provide written information on procedures and consider enhanced support for screening

Sensory Processing

· Conduct a sensory audit of waiting and consulting spaces

· Permit patient to have their camera off if they desire during video consultations (depending upon circumstances)

· Appropriate appointment times (beginning/end of day)

Predictability & Control

· Preferred regular doctor/practitioner

· Instruct on what to expect at appointments

· Tell the patient what to expect and what you are doing during examinations

· Signposting to clear , directive resources (e.g.www.autism.org.uk www.nhs.uk)

· Advise on expected waiting times

Conclusion

Against the backdrop of COVID-19 , visual consultations have removed many of the barriers for autistic people requiring access to mental health services. However, uptake can be variable, with some individuals being reluctant to embrace these new approaches Sometimes the precise reasons can be hard to pin down.

Of the limited research studies in the UK thus far, statistical and anecdotal evidence suggests that services should move away from a reliance on phone calls for communication. Instead of dependence on the telephone, written options such as email, live messages or online chat/captions during video calling may make virtual assessment and reviews more accessible. Further research should investigate the impact of COVID-19 on individual’s communication preferences, particularly those who are autistic or have mental health issues.

Clearly video calling will become more commonly used post-Covid and has been shown to present both benefits and challenges to staff and patients alike.

Significant progress towards eliminating healthcare inequalities for autistic people can only be achieved by understanding the healthcare experiences and access barriers for this vulnerable patient group.

References

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