Thoughts from the COVID-19 shutdown.
Where I live in Los Angeles County we are now into a 2nd month of restrictions due to the COVID-19 pandemic. It’s been fascinating to watch the medical research process play out in real time. Maybe there is something we can learn about ASD, where the arc is slower, from watching that process at speed?
One thing that’s come up with the virus is the testing issue. Generally in the US testing for the virus has been slow and limited. Here, in LA County, only about 1% of the population has been tested so far, mostly focused on people with obvious symptoms. And we have only just reached sufficient levels there.
This brings up the difference between the number of infections confirmed by testing and the actual number of people who are infected, which is necessarily higher. This is often muddled. For example, a recent newspaper article stated “as better testing becomes available the number of infected will rise”. This is highly misleading. Let’s be very literal here, because in this case it’s important to be very literal or we will misunderstand the situation. The number of infected is not changed by testing. The number of confirmed infections is. What we know for certain has changed, but what actually is has not.
Similarly, one week Los Angeles County announced a one day jump in the number of confirmed cases from 799 to more than 1200. The county medical official stressed this was because of better testing, not because the number of infections had risen by that amount. Unfortunately, news agencies reported the (dramatic!) jump in numbers but did not explain this was due to improved testing.
With ASD, we often hear of fears of an “epidemic of autism”. Personally, I do not believe there is. It is more like the testing problem with COVID-19. Most likely there has not been a massive increase in the number of people with autism. We are just paying more attention, doing more testing, less afraid of the diagnosis. Parents are advocating for their children to get them assistance, where in the past those kids might have been ignored, dismissed as troublemakers or hidden out of shame. The detection of something does not cause it to exist. E.g., America existed before Columbus “discovered” it. This distinction is important.
It’s likely that history is heavily populated with people with ASD, even though the diagnosis did not exist until recently. They did not know to call themselves that. Maybe they were marginalized, hidden or ignored. Maybe they were visionaries and prophets, critics and rebels. Maybe they were masking, and got through undetected; the “asymptomatic” of the ASD world. But they were there.
We should be careful how we think about this.