When what we don’t know can kill us.
I have been balking on publishing this post, which I started a month or so ago. I don’t want to say anything insensitive about COVID-19, which has killed many thousands of people. And I don’t want to be accused of “NT Bashing”. But I do want us to observe that most people have had difficulty with changes in routine and adapting to the new conditions under virus restrictions. It’s not just people with ASD who have problems with routine and adaptation. I think that’s a fair point. I have toned this post down a bit in hopes of making these points without giving offense.
Also given the unrest in the US following the death of George Floyd, the world has moved on and this already seems outdated. But here it is…
We are living through exceptional and anxious times. It’s been interesting to watch society deal with disruption and uncertainty, and the medical community tackle COVID-19, something critically important that we just don’t know that much about. Research and discoveries are unfolding in front of us in real time. Officials and experts are making tough decisions based on limited data and best guesses, and sometimes admit they don’t know. We’re not used to hearing that. We want our leaders and experts to know. It’s their job to know. In the case of COVID-19, lives depend on it.
But there are lots of areas of medicine and science where we genuinely don’t know and more research is needed. How does this medical uncertainty compare to ASD? Are there parallels?
Firstly, as a medical condition, despite advances that are constantly being made, autism/ASD is also not well understood. We don’t know what causes it. We don’t have definitive tests for it. Many treatments and therapies are experimental, based on trial and error. There is no “cure”. The idea of a cure may not make sense. New research is constantly challenging conventional wisdom. We don’t like admitting that we don’t know, and we frequently talk or behave as though we know when our information is uncertain.
Secondly, the question of testing. It has taken a while to develop and implement adequate testing for COVID-19, which has sometimes made it look like there’s been an increase in cases, when it is just better testing. Similarly, in recent years there has been increase in identified cases of ASD, but personally I do not believe there is an “epidemic of autism”. As with COVID-19, it is probably a result of better testing. There is more awareness, and in particular parents are advocating more for their children. Better testing and more awareness does not mean there is an epidemic. ASD was always there. We were always there.
There is a possible parallel with “asymptomatic” conditions. With COVID-19 it is apparently possible to have the virus but not show any signs of it. That is, to be infected but have no symptoms, hence asymptomatic. From an external point of view, perhaps this has happened in cases of ASD. Perhaps there have always been a greater number of people with ASD than have been identified, because they have been able to mask or hide it. Society teaches us and pressures us to hide ASD symptoms. If we do a good job, this gives the appearance of fewer cases of ASD in society than really exist.
Generally, the virus has definitely been a challenge. It was amazing to watch the whole world shut down. Personally, I am pretty socially isolated anyway, so while there has been some boredom and tension, my situation hasn’t changed much. My job had finished just before the shutdown started, so I was prepared to be out of work for a while. I have been pretty lucky so far.
We have seen society struggle with disruption to routine, changing expectations and adapting to a new normal. Autism is often associated with reliance on routines and difficulty adapting. But our whole society is struggling due to the virus. There have been protests here in Los Angeles over closures of businesses and beaches. Children are struggling with changes to school routines and remote learning. Some people are reacting negatively, violating social distancing orders or hording supplies they don’t really need, against the recommendations of authorities, which creates artificial shortages. Nobody is having a good time.
“Normal” or neurotypical behavior is often held up as an ideal we are judged by and should aspire to. But the world right now is a demonstration that nobody is perfect. It’s not that they can while we can’t. We are perhaps more sensitive. Or it could simply be that the regular world is designed to accommodate the typical person more than we think. The current disruptions reveal that many things are actually designed to be favorable, or at least tolerable, for the typical person. If enough people do not like something, or it does not work for them, it tends to be changed.
So, nobody is perfect. We each have our strengths and weaknesses.
And we are all in this together. That’s the really important thing right now.
Stay safe. In the words of Douglas Adams: Don’t Panic!
It’s not clear how much the stress of the pandemic and its restrictions have played into the protests about police brutality and the death of George Floyd. Police brutality and discrimination have been an issue for a long time now, and have not been adequately addressed. There is understandable frustration.
It’s encouraging to see many people from all communities protest and demand change. Most people have been peaceful and respectful. A few have caused problems. It’s possible that the disruptions due to the coronavirus have made us more open to questioning the status quo, and advocating for change, since everything is changing anyway.
Whether this is a sign of more changes to come is uncertain.