This is what it felt like to be lost in Australia's COVID-19 response as a person with autism

Submitted by bobb on Fri, 8/10/2021 - 10:19

Nick McAllister

When COVID-19 came uninvited to Australia, Prime Minister Scott Morrison and other state leaders stood behind their lecterns and delivered their messages to all Australians.

Content warning: This story includes descriptions of a struggle with mental health.

But it felt to me they weren't speaking to us all. 

There was one important community of people, and that's my community – people with autism — who couldn't comprehend the information being delivered.

There was no understanding or appreciation then, or even today, about how this virus would dramatically disrupt the lives of Australians with autism.

If you've ever watched an episode of the Charlie Brown show, you'll remember whenever a teacher spoke, it was in a garbled wah-wah noise.

This is what it felt like to me sitting at home, glued to the TV wondering what the hell was going on.

Youtube Charlie Brown and his friends hear a whole lot of noise from their teacher.

The early announcements were followed by an onslaught from the TV networks, from breakfast shows to nightly panels, where suddenly everything was being linked to COVID-19.

The Prime Minister, state premiers and chief health officers often seemed to be delivering different and contradictory messages.

We were constantly fed new pieces of information — we were like hungry, slathering dogs being tossed a fresh, raw piece of steak.

Every minute watching I'd feel even more confusion, which turned to anger and then despair.

Every day my anxiety and mental health took a more severe battering than it had the previous day.

Daily emergency press conferences from all corners of the nation became overwhelming for many. (ABC News: Gian De Poloni)

So, how did it feel?

I wasn't sleeping. Instead of informing me, the news almost pushed my mental health to the brink of what I could handle.

Nick withdrew from the world during the initial lockdown. (ABC News: Hugh Sando)

I felt like I was on the edge of a cliff, inside a car, the front of it was tilting forward and all I could hear was the virus's menacing laughter.

I couldn't make sense of any of it. I was overwhelmed and heading for a meltdown.

I withdrew from the world. I would stay in bed more and eat less. A nagging worry encroached on my every thought.

I didn't have a plan on how to deal with this and at that point, I didn't want one. I was too overcome with emotions and rage.

If you or anyone you know needs help:

Lifeline on 13 11 14
Beyond Blue on 1300 22 46 36
MensLine Australia on 1300 789 978
Headspace on 1800 650 890

I had allowed myself to become a paranoid, anxiety-ridden autistic man, who was frightened of going for a walk, who had panic attacks in the supermarket car park, who cried when he couldn't get toilet paper and came home and had a meltdown.

Self-isolation worked initially. As an autistic person I'm quite happy to sit in my room and read a book or watch videos on my computer.

But the challenge for me was to break out of that and bring some structure to my day.

How to reach my community

Many autistic people prefer consuming information with short, sharp visual aids where information is presented in simple terms.

The South West Autism network created infographs for their clients. (ABC News: James Carmody)

This is what would help me, and others with similar needs:

Any written materials produced by government agencies and service providers be provided in accessible formats, including easy-read formats.
A better distribution of information to people who do not have access to the internet, potentially by text message. 
A separate recorded briefing for the Autistic community where the rules are easily explained. 
A phone line where up-to-date information can be accessed from. 

Our challenges as autistic people need to be considered and the information tailored to us.

Governments must realise that a one-size-fits-all approach just doesn't work.

Messaging 'scatty' at best

Autism Awareness chief executive Nicole Rogerson said it became clear early on COVID-19 would have a "very real impact" on people with autism, for reasons that the rest of the community might not understand.

She said while she had some sympathy for governments dealing with the pandemic, she hoped they would look back and work out how to improve messaging to the disability community.

"It has been scatty at best," she said.

"Sadly, the disability community is very used to being an afterthought. I really don't think governments intentionally do this, it is just a very sad reality."

Ms Rogerson with her son Jack, who is also on the autism spectrum. (Supplied)

Her organisation brought in clinicians to help make videos to address some of the issues that were specific to the autism community.

"Home schooling, change in routines, anxiety et cetera all had a huge impact on our kids," she said.

"Obviously, we were all in lockdown, so we didn't worry too much about production values, we just filmed people in Zoom and got the content out fast."

Ms Rogerson said she felt the lessons to be learned were clear.

"[We need] a specific strategy to provide appropriate guidance, support and funding to meet the needs and requirements of people with disabilities," she said.

Those not on NDIS left out in the cold

In its interim report released on Monday, the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability handed down a damning assessment of the federal government's handling of the pandemic for people with disabilities.

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"The Australian Government and its agencies failed to consult with people with disability … during the early stages of the pandemic in 2020," the report said.

It found that as a result, the Australian government failed to develop policies specifically addressing people with disability.

"These failures had serious adverse consequences for many people with disability," it stated.

It also said the Australian government failed to collect or report adequate data on the impact of COVID-19 on people with disability.

The report found people with disability genuinely feared that health care rationing would be introduced and that they would be denied care because of their disability.

Most importantly, the inquiry acknowledged that in a national emergency such as a pandemic, it was vital to consult with people with disability and disability representative organisations, and to give appropriate effect to their advice and concerns.

What has been done to get the message across?

The federal government says it has offered a range of accessible information for the disability community.

A federal Department of Health spokesman said the department worked with other Commonwealth agencies, state and territory governments, peak disability bodies and the disability sector to promote COVID-19 messaging and ensure it was accessible.