Beyond the superficial, perceptions are everything. They influence the way we see and treat people. This week, you will have probably seen social media campaigns about Light It Up Blue, with a puzzle piece symbol in heavy circulation. ‘Awareness Matters’ or ‘Autism parent’ are also two widely used descriptors. Slapdowns across the internet occur to ‘think of the person first before the Autism’.
You guessed it folks, it’s Autism Awareness Week again — topped off with the same erroneous use of semantics that suggest autism is a problem and a tragedy. Well-intentioned campaigns that raise money for autism are largely inept — especially when the rights of autistic people have been rolled back during the course of this pandemic.
Autism is not political, but the act of acceptance is.
The good, the bad, and the ugly
Emily is a graphic designer by trade; aged 26, she is the brains behind 21andsensory, a website documenting life on the autistic spectrum.
She said: ‘Throughout the pandemic I’ve been able to work from home in my own environment which has been great. My mental health has definitely been up and down throughout the pandemic (as have many peoples’) but I really do think being able to work from home and set my own routine has really helped’.
An open-plan office is not the best working environment for someone like Emily. She also has Sensory Processing Disorder (SPD), which makes such offices extremely challenging to work in. While working from home, she explains that she uses fidget toys to stim freely and regulate herself, without the fear of being looked down upon.
In recent days the Chancellor, Rishi Sunak, has claimed that people should go back to the office — or there will be a mass exodus of people leaving if forced to work from home. For people like Emily, however, this has been a much welcome change. A fellow writer for ShoutOutUK has argued that Working From Home (WFH) needs to become the new normal. If there is one thing to take away from the pandemic, it should be the option to work from home for people such as Emily.
Compassion only when there is something to be gained
Messages of hope and compassion have characterised the response to this pandemic. We stood at our doorsteps clapping our beloved NHS, drew rainbows in chalk on pavements and in windows, and donated to charitable causes such as those championed by the late Captain Tom.
Compassion is exactly that — compassion. It should not be carried out when there is something to be gained.
‘Do not resuscitate’ orders have been sent to autistic folk at times, and often as a ‘blanket decision’. The National Autistic Society criticised this at the very beginning of the pandemic. It has been noted that time and time again, they were put in place and often without consultation — sometimes by way of dividing up care. A specific surgery was also criticised for this.
Karl Knights is a freelance writer whose work has appeared in places such as The Guardian. He said: ‘I think, everyday, I’m trying to figure out how to cope with the fact that I’m being told my life doesn’t matter. The fact that disabled people like me make up 60 per cent of the UK’s Covid death toll is on my mind every day. The UK has been a hostile and dangerous place for disabled people for a number of years now, but the ableism has never been this brazen, this openly on display’.
Autism is not a condition you will find on the shielding list. Such lapses in judgement only reinforce the feeling that ours is a society that makes a point to care primarily when there is something to be gained from compassion. The Chancellor has said it’s his job to think of the economy. Yet disabled people make up a largely untapped sector of this economy, too. The logic that our pandemic response must put the economy first is illogical when so many lives are on the line.
Autistic people are not even prioritised for the vaccine rollout despite making up a percentage of care home and supported living residents. Government policy is hardly geared towards or even aware of autistic individuals, despite decades of promises. Support services have been decimated. To be surprised would be naive.
Autism acceptance is a political act
If you are aware of autism, you will at least have some understanding of what the pandemic has been like for us. But the inane rhetoric that suggests people like me are a tragedy implies otherwise. Left Stranded, a report by The National Autistic Society, points to inaccessibility of public spaces, challenges accessing food, and so much more. Anecdotally, there are always stories circulating of verbal abuse, misconceptions around masks and exemptions, and more. (Autistic folk are exempt from wearing masks.)
Autism is so often politicised when it shouldn’t be. Yet to accept it is an innately political act; one that puts you at odds with current government policy. If you want to be an ally to autistic folk — rather than profiteer off our work, or indulge in exploitative and unattainable employment practices — start with acceptance. Ditch the tragedy tropes, dismiss the language of suffering forever. Talk to us as equals. Listen. Use your neurotypical privilege to stand up for us when you are able to and when it’s appropriate. That is the best acceptance there is.
DISCLAIMER: The articles on our website are not endorsed by, or the opinions of Shout Out UK (SOUK), but exclusively the views of the author.
