Opinion: This widespread sense of helplessness is all too familiar to Israel’s citizens with autism who feel isolated, scared and uncertain on a daily basis, but now also feel now feel left behind by those they rely on to survive
As the coronavirus epidemic shakes the very foundations of Israeli society, please remember those who experience isolation, helplessness, anxiety and frustration all year long, with or without a pandemic.
The sense of powerlessness that everyone is currently feeling is all too familiar to Israelis with autism, who frequently feel as though they have been left behind by the government – and often by those closest to them.
“The strength of the human chain is measured by how it treats the weakest links,” said Maj. Gen. (ret.) Doron Almog when he opened the Aleh Negev rehabilitation village for disabled children and adults in southern Israel.
And now in the moment of truth, this same chain that has been a source of pride for many has turned out to be nothing more than a pile of links thrown haphazardly to the ground.
Yoav (a pseudonym) is a 16-year-old on the spectrum who even before this state of emergency felt anxious and tearful whenever there was no food in the fridge. And while he needs help putting sentences together, it doesn’t mean he has nothing to say to anyone willing to listen.
Of late, Yoav has found himself in distress much more often, crying nonstop for no apparent reason and without any warning, while his mother does everything in her power to make him happy, even staging musicals for him in their modest apartment.
Yoav is one of the lucky ones. I wish you could understand what it’s like to be a child with autism treated like a parasite by their parents, hidden away from the world due to parental shame.
This is not social distancing, it is treating a child like a deadly plague, it is delegitimizing and dehumanizing.
Autism is characterized by poor understanding of interactions and societal guidelines. It can include a lack of social skills, difficulty following conversational cues and conventions and dislike of change, in particular when it is unexpected.
Like me, many people with autism now feel confused and are without any understandable guidelines on how to act during this time of emergency.
Some have barricaded themselves at home due to distress, while others are trying to stick to the new regulations.
For many years we have struggled to be seen, to be treated as more than a virus that makes people cross to the other side of the street, and whose presence is “disinfected” from educational institutions.
We want to be seen as equal, to fit in, to prove that we are capable if only we are noticed. But during these troubled times, the population with autism is once again sidelined.
It is so easy to forget that this is a very vulnerable population, many suffering from motor and functional problems that require constant therapeutic care.
True, I am a high-functioning person with autism, but one who is on probation, accompanied by a probation officer and needing the approval of others to live my life.
For years I worked hard to rebuild my life from the ruins, step by step. It was not easy and was fraught with crises and distress. It is only in the last two years that I have managed to achieve this, after spending most of my life in isolation.
Now I’m isolated again, anxious that all my hard work was for nothing.
“The Ministry of Social Welfare has not yet heard about video conferencing,” said the social worker assigned to me from a two-meter distance, as I worried over how to deal with all the restrictions.
My gym closed three weeks ago. This stripped away a place that for years was my home, where I saw people and sometimes even managed to have a conversation. Now that too is gone, and I have no one to talk to.
I’m very sorry to burden others, but without support from the strong links in the chain, people like me will simply perish.
I know the situation is hard for everyone; this is something that I struggle with, but I am trying my utmost. And as someone who wants to survive, I am turning to my fellow Israelis.
On the day after the epidemic, there will be no more generational divisions – only the coronavirus generation, and it will be a different world.
This is our opportunity to reinvent ourselves as a society – a strong human chain with no links left to feel weak, vulnerable and alone.
As reported by Ynetnews