IT’S perhaps the first time in many years our social media feeds haven’t been filled with ‘awareness’ posts and jigsaw puzzle pieces during April. It’s a shame it took a pandemic to make that happen.
Indeed, noting the existence of autistic people has been a low priority across the world. That’s for a very good reason – COVID-19.
However, there’s a problem with this. Autistic people, who make up about 95,500 of all 338,982 participants, are by far the largest diagnostic group receiving funding via the National Disability Insurance Scheme. And they are reporting significant issues around a range of life areas due to the pandemic – now is a time for increased awareness around issues for autistic people, not less.
We hear these issues every day. Many families have multiple autistic members in their families – schooling is often a specialist area, with time and patience devoted to teaching in a classroom environment with support staff, education assistants and teaching staff. In addition, many parents of autistic children are also autistic.
Poverty is also a factor – more than half of all disabled people live below the poverty line. For families with multiple children, that means fewer resources at home, including computers and iPads. Inclusive education means reasonable adjustment, a modified curriculum and specialised instruction – few non-home-schooling parents are equipped with the skills to adequately educate multiple autistic children.
Disability service agencies continue to close their doors against the threat of infection, or withdraw staff as they fall unwell. For autistic adults living at home, this means that support is predominantly left to informal carers, who are often aging and at high risk for COVID-19.
Reliance on community paid supports means an inability to self-isolate, putting autistic people and carers with co-occurring disabilities at increased risk of community transmission. At the time of writing, disability support workers do not have routine access to PPE – nor are they eligible for testing in the same way that aged care and health workers are.
In group homes and congregate settings, autistic adults are clustered together with other disabled people. Many Australian Disability Enterprises (ADEs) remain open as ‘essential workplaces’ – even when the work involves packaging Qantas headphones for a few dollars an hour.
Late last week, a Western Australian ADE who employ 450 disabled staff members announced that a disabled employee had tested positive to COVID-19. The worker had contracted the virus through contact with a bus driver on the way to work. Within a few days, the workshop reopened.
Another disability service provider, Interchange, announced that a disability support worker had contracted the virus. It follows an announcement that an allied health professional in WA had fallen ill, as well as two disability support workers in Auckland and Wellington, NZ.
One of the biggest challenges for autistic people is not inherent vulnerability, it is marginalisation. The Ruby Princess is in the news because it is a congregate setting – people who were aboard cruise ships are dying every day. Living in a group home, working in an ADE or being forced to attend a day program with many others increases both transmission and infection risks many times over. In the USA, 89 staff and residents in a Supported Living Centre tested positive to the virus.
Evidence before the Disability Royal Commission late last year raised significant issues for people with cognitive disabilities in the health care system, including preventable deaths. The Disability Royal Commission raised concerns about access to health without discrimination – for autistic people, who face significant barriers to both health and mental health, there are serious concerns. They included the need for a rapid response from government and the NDIA to ensure adequate support for people who cannot effectively self-isolate or adhere to social distancing laws.
And yet even in a crisis as overwhelmingly as the coronavirus COVID-19 pandemic, there is a bright side. Many autistic people have found themselves surprisingly well equipped to deal with social isolation – for many of us, this is part of our lives.
There are flexible employment measures being rapidly introduced, like increasing use of technology and work from home arrangements, something advocates have been lobbying for a long time.
Awareness is being raised about inequities like the failure of government to raise the DSP and Parenting Payment, as well as difficulties autistic people may have with sourcing specialist food. Few of us are mourning rules around physical contact with other people.
Perhaps the pandemic will help us be included in ways we haven’t ever been before, if our voices aren’t lost in all the rest of the noise.