Voice of autism in Trieste: can Covid lifestyle be almost an autistic way of living?

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This story is part of the literary competition created by In Trieste magazine in collaboration with Comune di Trieste called “Stories from Trieste to the World” which was open to all female writers living in Trieste as part of the annual “Festa della Donna” initiative by the city of Trieste.

by Paola Marangi

Being the mother of an autistic teenager, I have gladly welcomed the opportunity to describe some of the odd similarities I have noticed between the restrictions we all have had to cope with since the Covid breakout, and the self-imposed restrictions in autistic people.

“Lockdown”, a term we all understand nowadays, is all about restrictions varying in time and in space (rules not only differ from areas to areas, but – hopefully – they are not here to stay permanently).

On the other hand, the lifelong issues of autism and of a range of several mental disorders are well-known only by few, i.e. those who work or live with an autistic person.

For the majority of people, the term “autistic” evokes a person gifted with amazing abilities and exceptional skills, thanks to some Hollywood movies in which characters like Rainman, or – more recently – The Good Doctor, are at the least not credible, if not misleading.

Unfortunately, though, autism and other mental disorders in some cases can be compared to a harsh verdict of an ever-lasting lockdown for these persons, no matter what colored area they are living in now, or will be living in once Covid restrictions have been lifted.

The self-imposed limitations some of them set on their freedom of movement and on their range of behaviors, may mean a lifelong imprisonment spent inside an invisible cage they lock themselves in, its bars being their peculiar rigid schedules limiting their range of potential experiences.

Most people with an obsessive compulsive disorder or with autism will rely strictly on sameness and clear rules to help them understand and manage an otherwise chaotic world. Visual schedules for some of them, and repetitiveness for almost all these individuals, do help to control their anxiety for unexpected events: basically, for them, anxiety is an ubiquitous nightmarish companion that haunts their lives and in some cases, make them avoid any social contact. This can be rather challenging for us “normal” people, since in “normal life” (i.e. life without Covid) one can expect any sort of trivial disruption in a typical day, against which we are usually neurologically and cognitively naturally equipped.

Common enjoyable moments, e.g. trips to new places, bumping into good old friends, trying a different restaurant, sharing emotions, reading, or enjoying physical comfort in a cuddle, etc. – mostly all the events that turn a new day into a wonderful experience worth being lived, can instead be extremely stressful for someone like my son. In his early years, his skills were very limited, he was non-verbal until he was 7: all he demanded then was sameness and strict visual rules to follow religiously. People would not interest him at all then, or now, at eighteen.

A non-verbal or little-verbal autistic person’s communication is severely impaired, sometimes the person also has over-sensitivity to touch, sounds and lights: these factors (too) can make socialization a painful experience. Being touched can actually cause tantrums in some autistic people.

That’s why, in my experience, some permanent features of autism come close to our life in the strictest lockdowns: in dreading strangers’ proximity, in feeling safe only in a protected environment such as our homes, in relying on our routines to give sense to these hard times.

Actually, whenever I read to my students Dickens’ description of life in the fictitious city of Coketown (Hard Times, a perfect title!), I can’t help thinking about what my son would naturally love to do both in Covid time, and in “normal” time: “…. (going) in and out at the same hours…. to do the same work,….every day was the same as yesterday and to-morrow…“.

Doesn’t this “unreal city” scenario sound familiar to us now, after months of enforcement of anti-Covid restrictions? All we are left with now seems to be buying food, spend ages and fortunes online, and – for the lucky ones who haven’t lost their job – going to work. That’s it, basically. No more dreaming of holidays, cuddles, light-hearted laughter, dinners with friends; no entertainment.

Just work and duties in unreal cities to live in (T.S. Eliot ‘s The Wasteland comes to mind).

Regardless how restrictive and uncomfortable these restrictions may seem to us “neurotypical” or normal people, as we like to address ourselves, we are privileged for having been gifted with “neurotypical” natural skills which will enable us to catch the first glimpse of the halo at the end of this long dark tunnel.

A light of change, the return of our personal freedom, of our “normality”….. something that some of us, like my son, will never be able to fully appreciate.