World Autism Awareness Day: Celebration and citizen science

Thursday 02 Apr 2020

Today, Thursday 2 April, is World Autism Awareness Day. It was founded by the United Nations to draw attention to the “cliff-edge” faced by many autistic people around the world when, on the cusp of adulthood, the support they’ve had from governments throughout their childhood and teenage years suddenly stops.

Individually this can be devastating, and if autistic people are disadvantaged by a society which does not support them, there is so much for everyone to lose. Awareness is vital, but it is just one step towards understanding, empathy and action. It is not enough on its own. Autism is frequently both misunderstood by the public and mischaracterised by researchers. It is described in numerous scientific studies as a deficit, disease, dysfunction, aberration—implying that something is missing, or that something has gone wrong. There are “social deficit,” “semantic deficit,” and “imagination deficit” hypotheses of autism. Perhaps the person who coined those terms had a social, semantic, or imagination deficit of their own.   

When some people encounter difference, they can mistake that for deficiency, and adaptation can be dismissed as slowness or delay. Autistic people are often viewed as being less engaged and less able to fully understand, when actually they just understand and engage with things differently, and, of course, individually.

Have you ever had the experience of being surrounded by speakers of a language not your own, trying hard to communicate? If not, can you imagine it? You could be slower to grasp certain things people are saying. You might be more halting or unconfident in your speech, or miss in-jokes, but that’s not because you aren’t articulate, intelligent or social. It’s just that you’re making the difficult effort of adapting to other people. By doing this, you’re making it easier for others to express themselves in the way they find comfortable.

"The reality is, in ‘supporting’ others we support ourselves as well."

Whether you are autistic yourself or neurotypical, the autistic people around you - friends, colleagues, family - are, like all of us, unique. You probably can’t imagine what they can do - but you can ask, and you can help, and you can make things easier. The reality is, in ‘supporting’ others we support ourselves as well, because we all flourish more when autistic people flourish.

Here at the Turing, we are researching how sensory sensitivities affect autistic people’s navigation of different environments. We are doing this by developing a citizen science platform to collect the experiences of autistic people at scale. This will form a dataset we can use to implement policy and modify built spaces, such as workplaces, hospitals, and schools, so they are better suited to autistic people. It is not a normal study. It is a participatory study, meaning that autistic people are collaborators, co-designers and co-authors at every stage (including co-writing this blog). Autistic people make decisions and they set direction. We are both researchers and research subjects.

The project is openly run, and welcomes contributions from everyone, neurotypical, neurodiverse, autistic, non-autistic. If you want to transform awareness into action, or if you are already active and want to get involved, visit our github website.  

To end this brief post by looking forward, and to return to Turing for the final words, we can only see a short distance ahead, but we can see plenty there that needs to be done. Let’s do it together.

Cover photo courtesy of Autistica, from the short film #Understandmore

This blog was edited on 9 December 2020 to remove a quote that was misattributed to Alan Turing.