Years ago, I came across a fascinating story, the one of a Hungarian soldier András Toma. András was drafted to fight in the Second World War as a young man in his early twenties. He was captured by the Red Army in 1944 and wounded up in a Soviet Psychiatric Facility. Unable to communicate, he stopped talking altogether and remained silent around the Russian speaking staff for five decades. It wasn’t until a Hungarian speaking doctor had visited the facility in 1997 and identified that András was not deranged, just Hungarian. András was returned to Hungary and reunited with surviving family. He lived there for four years until his death.
Given that I am autistic, there are several elements of the story that captured my imagination. First thing that is striking is the breakdown in communication and the failure of the hospital staff to express any curiosity about the silent man (who I would presume, spoke in Hungarian when first admitted). It’s a story of a profound alienation while surrounded by people in the context of institutional setting. A shutdown lasting a lifetime.
The second part of the story that runs in close parallel to the autistic experience is the deliverance by a healthcare professional. The identification and de-pathologisation of the behaviour. When I’m asked why I looked for an autistic label for myself my reply is that it was a more palatable trade off in the light of other labels I’d been given. Would you rather be called “odd” and “uncaring” or deal with being “autistic”?
Lastly, there is an intriguing parallel of a doctor identifying András as Hungarian. I often wonder as to why (given that autism is no longer classified as a disorder or a syndrome) it is identified by diagnosis, a method for detection of an illness. Autism prevalence figures range from a meagre estimate of 1% to a very generous 20% in the general population. Having worked with a few fellow autists as a counsellor, I am inclined to believe that there are many non-classical presentations overlooked in girls, women, non-binary, and transgender people, as well as non-classically presenting autistic men and boys. So the 20% mark is not at all farfetched.
Many autists speak of anguish due to misunderstandings (and downright bullying) in the school. Further corroborating this point employment figures for autistic people are depressingly low. Those few of us who are employed encounter obstacles and overwhelm. Similar issues arise in schools resulting in school avoidance. I struggled with overwhelm daily for nearly three decades.
Sadly, the waiting times for diagnoses are very long and many autistic people are turned away by the incapacitated NHS. The lists are now measuring in years. Private diagnoses are often too expensive to pursue (remember that unemployment rate?) and are still subject to increasingly substantial waiting times. In the meanwhile, the mounting pressures, anguish, and anxiety over being misconstrued, contribute to avoidable suffering of autistic and other neurodivergent people. Suicide and suicidal ideation haunt many autistic adults.
"Whatever you are by nature, keep to it; never desert your line of talent. Be what nature intended you for, and you will succeed."
Modern life poses a lot of problems for all neurotypes. Our environment is saturated with stimuli from noises, to visual, to smells, and uncomfortable clothing. Virtually every professional and urban setting is an assault course for an autist. Tasks, texts, emails, are all piling up rapidly and keeping track of them is trickier and trickier. Most of us drop the ball or collapse altogether at some point.
Finding allies and advocates is paramount. National autistic society has a bunch of resources that are very helpful indeed. Where possible I would wholeheartedly recommend reading books written by autistic people to further the knowledge. Even though I am autistic, I held a fair few misconceptions and internalised ableism about this condition. I know better now. Connecting with other autistic people on social media gives me solace, self-compassion, and ignites my curiosity. Getting people in the position of power to listen is also important. Greta Thunberg said that no one is too small to make a difference so if you have the resources and resolve, advocate and educate to create change.
Take refuge in your special interests and hobbies. Unapologetically. They will sustain and nourish you. I quite like to apply what Sydney Smith once said, "Whatever you are by nature, keep to it; never desert your line of talent. Be what nature intended you for, and you will succeed."
If therapy is sought, it may be worth your while looking for a practitioner who understands autism or is themselves autistic. Certain modalities are better suited than others. My personal view is that person-centred approach works well for a lot of autistic people as do integrative approaches centred on humanistic school of therapy. I work with fellow late diagnosed autists most of whom have been women, but I welcome all genders.
Lastly, take care of yourself. Things are moving at an increasing speed, but it is obvious that many organisations are slow to catch up and the recent uptake in diagnoses meant a vertiginous climb up the learning curve while moving at a glacial pace for the individuals languishing in the diagnosis limbo or awaiting reasonable adjustments post assessment. Fifty years to an institution is but a chapter. Fifty years for a person may well be their entire story.