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.