Coronavirus: A plea for humane solutions for people with autism

People with autism who are nonverbal and low functioning, sadly, may find themselves hospitalized and heavily medicated on locked wards of psychiatric hospitals.

By HANNAH BROWN
A MUSLIM and a Jew work together to care for young adults with autism in ‘The Specials.’ (photo credit: CAROLE BETHUEL)
A MUSLIM and a Jew work together to care for young adults with autism in ‘The Specials.’
(photo credit: CAROLE BETHUEL)
My son’s 24th birthday is coming up but we won’t be together to celebrate. That’s not a remarkable story in these days of the coronavirus pandemic, however, our case is a little different. My son is autistic and he doesn’t understand what a pandemic is. He can’t grasp why I can’t pick him up from his group home for Shabbat or even visit him. It’s ironic that this is happening this week, since April 2 is World Autism Awareness Day.
The Health Ministry recently ruled that people with special needs must stay in their residences. If they are taken out by their families, they must remain at home for 14 days. I’m not a doctor and can’t speak about the medical aspects of this ruling, which certainly seems quite arbitrary, but I can say that it is causing unfathomable suffering for those with special needs, especially for those who, like my son, have no way of understanding why they cannot see their families.
Of course, I’m considering taking him home for Passover, but I have to work and it is very difficult to take care of an autistic person for weeks on end with no help and nowhere to go.
I understand that everyone has to make sacrifices right now to stop the spread of the virus. For people with autism and their families, however, the new rules are especially harsh. I would even use the word inhumane.
Most families of people with special needs are so busy living day by day, even minute by minute, they can’t speak out against this policy, and so I fear the public does not realize how dire the situation has become.
Yair Lapid has a daughter with autism, and he has chosen to take her home from her residence rather than lose all contact with her. Lapid criticized the new policy in a scathing Facebook post last week, saying, “People with special needs and their families have - as usual - fallen between the cracks.”
The vast majority of adults with autism in Israel work in one place and live in another, so for weeks now they have been kept in their residences with little or no activity. While the popular image of people on the autism spectrum is that they are quirky, endearing geniuses like the Dustin Hoffman character in Rain Man, the reality is that many of those in this population are nonverbal and have problems with violent outbursts and self-injury - literally banging their heads against the wall in some cases - in the best of times.
To be cut off suddenly from their daily work routine - which provides them with crucial stability - and contact with their families, is enough to send them into meltdowns or worse. The staff of these residences work in very difficult conditions for little money. They are trying their best to keep the residents occupied and calm, but it is an almost impossible task.  
Even worse, many of these homes are funded in part by non-profits that get government money, and these non-profits have no budgets for 2020 because there is no Knesset to approve their funding. Several organizations that run group homes for those with special needs may need to shut their facilities in April because they simply will not have a single shekel to meet their monthly payroll.
As a result, there might well be a flood of special-needs people suddenly sent back to families that may be unable to take care of them, either because the parents are now elderly or simply cannot cope.
So who picks up the slack? People with autism who are nonverbal and low functioning, sadly, may find themselves hospitalized and heavily medicated on locked wards of psychiatric hospitals.
The closing of special education classes and schools has also placed families under great strain. I am in two WhatsApp groups for special-needs parents in my area and get hundreds of messages a day from parents trying to care for their children as best they can. This is a very different reality from trying to keep typically developing kids occupied, and far more challenging.
While there can be no excuse for compromising anyone’s health during this outbreak, the families of those with special needs are pleading for a little common sense. The Health Ministry, for example, decided to allow mikvaot (ritual baths) to remain open during the crisis. Although an improperly disinfected mikveh can spread disease, it was determined that closing them would cause undue hardship.
The ministry did alter its ruling on going outside for special-needs families, and now allows people to take their special-needs family members on walks more than 100 meters from their homes. If people with special needs were at least allowed to visit with their families - who would be required to adhere to all Health Ministry guidelines - that would relieve some of the stress on this community and those who work with its members.
It would help, too, if some way were found for people with special needs to continue working. And if the organizations that care for them could receive emergency funding to tide them over until a new Knesset is in session, that would insure that there are no mass closings of special-needs facilities, and that those who do this difficult and necessary work will continue to get paid.
In Proverbs 31:8 we are told, “Speak up for those who cannot speak.” So for the sake of people with autism, I am begging for some common-sense solutions that will help them weather this crisis in the most humane way possible.


Related Tags
special needs
autism