Wednesday, 6 May 2020
COVID-19: Protecting the vulnerable
Autistic people and their families should not be left behind during (or after) the COVID-19 pandemic
Iliana Magiati and Jac den Houting
Iliana Magiati and Jac den Houting discuss some of the specific challenges autistic people and their families may experience during COVID-19. They explain what is currently being done, what else could be done, and what lessons we can learn to ensure that autistic people survive and thrive during this critical period and beyond.
Why are autistic people and their families more vulnerable to the negative impact of COVID-19?
Autistic people are at particular risk during COVID-19 because they were already more vulnerable in the first place.
In a world of approximately 7.8 billion people today, autistic people make up roughly 1% of the world’s population, a whopping 78 million. In Australia, there were 205,200 autistic Australians in 2018 .
Affecting both males and females, an autism diagnosis can be given at any age and autistic people live widely different lives to each other. Many autistic people are intellectually able, live independently, study, and work, although they may still require support with socialising, daily living, mental health or other aspects of life. Many other autistic people have co-occurring intellectual disabilities, do not communicate through speech, and have high support needs in different areas throughout their lives.
At the individual level, autism primarily affects people’s ways of communicating verbally and non-verbally, understanding the social world, and interacting with other people. This often makes it difficult or confusing for autistic people to communicate and relate socially in a society that isn’t designed for autistic social styles.
Autism also affects a person’s sensitivity to sensory input, so the world can be overwhelming and information processing can be challenging. Autistic people often have highly focused interests and tend to thrive on routine, structure and predictability. These autistic traits – and the associated challenges – can be heightened during the rapidly evolving, uncertain, unpredictable and often confusing COVID-19 era.
Research from across the world shows that, compared to the general population and to some other disabled groups, autistic people are significantly more socially isolated and lonely ; experience more victimisation, bullying and discrimination ; and are far less likely to participate socially in their communities. Autistic people are also much less likely to complete education beyond school , and more likely to be under- or unemployed.
Perhaps most concerning, autistic people are much more likely to die prematurely ; and experience significantly higher rates of medical or chronic health conditions and mental health difficulties (e.g. anxiety, depression , suicidality ).
Existing individual vulnerabilities, and the systemic barriers autistic people face, are likely to be exacerbated by COVID-19.
It will be some time before large-scale studies examining the impact of COVID-19 on autistic people, their families and those who support them are completed. However, vital anecdotal information on the effects of the virus and the associated social distancing measures is already available through the personal accounts of autistic people and their families and via leading disability, autism, and autistic organisations.
Clearly, the COVID-19 pandemic will affect autistic people and their families in many different ways. The temporary closures of schools, universities, day programs, and supported independent facilities, plus working from home arrangements for those in the workforce, have probably left many autistic individuals grappling with learning and working from home, without the direct formal structures and supports they relied on prior to the start of the COVID-19 pandemic.
For autistic people with higher support needs, online learning, work, or other occupations may not be possible, placing considerable additional demands on families and people who support the autistic community during this time. With many diagnostic, intervention, educational and employment services temporarily suspended, diagnoses are likely to be delayed, as will be access to professional support systems.
In terms of their physical health, autistic people may be particularly concerned about their increased vulnerability to the virus itself, given the high rates of autistic people being immunocompromised or having other medical conditions. Anxiety and low mood may be further exacerbated by the uncertainty of COVID-19, and by the additional isolation experienced during this time.
In health systems that have been or will be stretched to the limit due to COVID-19, autistic people may even have concerns about whether their lives will be prioritised as worthy of being saved , if it comes down to that.
Finally, inequities in employment and/or access to financial benefits for those who now find themselves without work will also likely have a disproportionate impact on autistic people and their supporters during this time. In the longer term, it is unclear how the economic crisis predicted to follow the pandemic will affect funding for the future provision of autism services, support structures and research. What has been done, and what else could be done, to support autistic people during the COVID-19 pandemic and beyond? The Australian Department of Social Services has developed services and supports for people with disabilities and their carers specifically relating to COVID-19, while the National Disability Insurance Scheme (NDIS) has provided flexibility around how funding can be spent, introducing funding for new support items and proactively reaching out to participants.
Many autism organisations and service providers have also quickly adapted to offer more flexible, alternative methods of communication and support, with a focus on telehealth. Some of these efforts may actually make services accessible for more autistic people and their families than the largely face-to-face approaches used in the past.
Community mobilisation at the family, friend and neighbourhood level may improve social engagement and enhance mutual support. Some COVID-19-initiated policies, like priority shopping hours for the elderly and those with disabilities, might have inadvertently created more accessible environments for autistic people. These efforts and adaptations appear to be steps in the right direction.
Having said that, it is crucial that we systematically collect and analyse research data on people’s first-hand experiences of COVID-19 and the associated restrictions, as well as service access and utilisation during this time, to inform longer-term decisions and future planning.
Could these changes and initiatives also represent a “silver lining” in the ways we engage with, support, teach and relate to autistic people post-COVID?
To reduce autistic people’s vulnerability to the negative impacts of the COVID-19 pandemic, and to improve post-COVID 19 outcomes for the autistic community, equitable access to technology and to physical and mental health care is paramount, while losing jobs and salaries should not disproportionately affect autistic people or their family members.
Funding and support to employers of autistic people should enable more autistic people to remain in the workforce during this difficult period. Service funding needs to be maintained and flexibly reorganised to include all alternative modes of service delivery that have demonstrated or can demonstrate acceptability, accessibility and effectiveness for autistic people.
The needs of autistic people without intellectual disability may require particular attention, as they often tend to “fall through the cracks” between disability services and mental health services, and as a result receive little or no support. While this should not be happening at any time, it should definitely not be happening during a pandemic.
Charities and other not-for-profit organisations need to be continuously supported to provide information, training and support, as their role can be particularly vital in times of need.
Finally, although research on the negative impacts of the COVID-19 pandemic on autistic lives and livelihoods is crucial, it will be equally important to explore whether autistic people found any particular changes, measures or policies to be positive and/or helpful, so that we can maintain these beneficial ways of learning, working, living, and engaging with the autistic community when life returns “back to normal”.
Research aiming to answer questions of importance to, and in partnership with, the autistic community on the impact of COVID-19 and the lessons we can learn to protect and empower the autistic community in the future will therefore be essential.
Dr. Iliana Magiati is at the School of Psychological Science, The University of Western Australia ( @IMagiati ).
Dr. Jac den Houting is at the Macquarie School of Education, Macquarie University, Sydney; and the Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Australia ( @JacdenHouting ).
This piece has been drafted with support/ input from Prof. Liz Pellicano, Macquarie School of Education, Macquarie University, Sydney, Australia; and Prof. Patricia Howlin, Institute of Psychiatry, King’s College London, UK. The authors would like to thank both of them for their constructive feedback and insightful perspectives.
 Some examples include: https://www.autismspectrum.org.au/how-can-we-help/helping-you-to-navigate-covid-19 ; https://www.autismawareness.com.au/news-events/aupdate/autism-and-coronavirus-covid-19-the-essentials ; https://www.autism.org.au/coronavirus-covid-19-update/ ; https://pwd.org.au/covid-19-hub/ ; and https://www.autistica.org.uk/what-is-autism/coronavirus
- UWA Public Policy Institute