Feature: Effectiveness of virtual assessment and care reviews for autistic people

In this feature, David Crisp – autism trainer and speaker, and autism needs assessor – discusses what hurdles autistic individuals often face when dealing with virtual healthcare assessments.

Due to their differences in expressive or receptive communication, executive functioning/planning and sensory sensitivities, many autistic people face significant barriers to accessing healthcare. For some, previous negative experiences impact upon their ability or willingness to approach health professionals.

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. 

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 recent studies 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. Autistic individuals 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.

Evidence from a number of 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, many others may also 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. This can result in 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 the phone line, or from the home or health care environment, makes effective communication very difficult.

In addition, some 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 presented by opposing sides of a conversation; leading to the health professional also having to 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 for the patient or client!

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 past the engaged tone, or speak to someone or leave a message, then having to endure the worst 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.

An important aspect of autism presentations 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.

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.

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
• Encourage the patient to make a list before the call
• Support the patient to find a quiet place and appropriate time for appointment
• Support the patient to share their main concerns
• Provide sufficient time for patient to make a record of conversation
• Conclude with a summary or action plan

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 choose not to be assessed for a diagnosis.

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.

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.

If you require some support or training on assisting autistic individuals to access health care, please contact me via my website. 

Photo by Sharon McCutcheon