The Challenges COVID-19 presents for Autistic People

The Challenges COVID-19 presents for Autistic People

by Dr Silvana Uniqwe

Dr Silvana Unigwe is a GP based in London. She has worked with the Royal College of General Practitioners to enhance autism awareness in primary care and has collaborated with the National Autistic Society and Autistica.

Dr Silvana Uniqwe

Dr Unigwe is interested in improving access to healthcare and promoting mental wellbeing in vulnerable patient groups.

It would be an understatement to say that this year has taken all of us by surprise. The coronavirus pandemic has radically changed the way we live.

With the first wave of COVID-19, healthcare systems had to adjust to large numbers of people becoming unwell and needing hospital treatment. This led to the postponement of outpatient appointments and treatments, as well as elective operations. In general practice we moved to a largely telephonebased triage appointment system. Most consultations are now conducted remotely (by telephone, video or online platforms), although face-to-face consultations still occur when needed.

Some patients appreciate the convenience of engaging in remote consultations from the comfort of their home, and technology has made some aspects of our work as health and care professionals more efficient. That said, there are concerns that many patients have experienced barriers to accessing healthcare during this pandemic and that this might have led to delayed diagnoses and premature mortality for some.

Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition that affects approximately 1% of the population, occurring more in males than females. Presentation differs from one person to another, but the core features are persistent difficulties with social communication and social interaction, as well as restricted, repetitive patterns of behaviour and interests. Many individuals also have sensory sensitivities. Various conditions can co-exist with autism, such as learning disabilities, attention deficit hyperactivity disorder (ADHD), depression, anxiety and epilepsy.

A study conducted a few years ago in Sweden reported increased premature mortality in people with ASD compared to the general population.1 In the UK, the Westminster Commission on Autism reported that 74% of respondents to their survey felt that autistic people receive a “worse” or “much worse” health service than their non-autistic counterparts.2

With this in mind, we need to be especially aware of the impact of COVID-19 on the health of autistic patients, who as a group were already at a disadvantage before the pandemic.

Indeed, a UK study conducted earlier this year reported that 86% of family carers thought that the needs of autistic people and their families had not been adequately addressed during COVID-19.

Coping with Change and Uncertainty

Repetitive behaviour and fear of change are common features in autism. The uncertainties that we have all felt are likely to have been magnified in autistic people, causing heightened anxiety.3

Some may experience an intense fear of catching COVID-19 and may find the ever-changing public health advice confusing. Others may lack safety awareness, such as with social distancing, and be at increased risk of exposure to the virus.

With many autistic adults and children already experiencing or being at risk of mental illness before COVID-19, there is concern that the pandemic has caused a deterioration in mental health for those who have found it difficult to cope with the rapid changes.

It is worth noting that some people may have experienced positive effects from the move to remote communication. The challenge here will be to support their transition back to usual life and increased demands for social interaction.

Reduced Support Services

There has been ever more reliance on autism charities and private therapists for the care that would otherwise be provided by schools and other statutory support services. Carers have had fewer opportunities for respite, and this is likely to have taken a toll on their own health.

Scheduling Healthcare Appointments

Some GP practices require patients to submit their requests for a GP appointment via online forms, which can be quite complex to navigate through. The process may be tedious and confusing for some autistic patients and put up a barrier to engagement with healthcare services.

Remote Appointments

Although some autistic patients may prefer remote consultations, others may find explaining their symptoms over the phone difficult and stressful. In addition, some may have difficulty localising their symptoms and are unable to give a clear enough history by telephone. A rigid insistence on phone consultations could therefore be inappropriate and alienating, so there should be a lower threshold for offering face-to-face reviews.

Things We Can Do to Help

1. Be flexible. Ask autistic patients and their carers what would make access easier, and flag their patient records with details of reasonable adjustments. For example, allow them to make appointments by phone if they struggle with the online forms.

2. Be proactive about contacting patients to check on their wellbeing. Encourage them to attend health checks, flu jabs and diseasemonitoring appointments. Monitor them for signs that their mental health is deteriorating.

3. Promote structure and reduce uncertainty where possible. For instance, rather than telling them they will get a call back from a GP “at some point” on a given day, offer a specific time.

4. Pay attention to the needs of carers, who are likely to have experienced increased demands during this pandemic period.

1. Hirvikoski T., Mittendorfer-Rutz E., Boman M., et al. (2016). Premature Mortality in Autism Spectrum Disorder. British Journal of Psychology. doi:10.1192/bjp.bp.114.160192 https://pubmed.ncbi.nlm.nih.gov/26541693/

2. The Westminster Commission on Autism. (2016). A Spectrum of Obstacles: An Inquiry into Access to Healthcare for Autistic People.

https://westminsterautismcommission.files. wordpress.com/2016/03/ar1011_ncg-autismreport-july-2016.pdf (Last accessed November 2020)

3. Pavlopoulou G., Wood R. and Papadopoulos C. (2020). Impact of COVID-19 on the Experiences of Parents and Family Carers of Autistic Children and Young People in the UK. UCL Research Briefing.

https://discovery.ucl.ac.uk/id/eprint/10101297/3/

Pavlopoulou_COVID19%20AUTISM%20FINAL%20GP. pdf