In the last few days, it almost feels like the world is falling apart. A week ago everything was fairly normal. Now, we are in the middle of a pandemic, with a brand new coronavirus spreading rapidly through the world population and causing the illness COVID-19. Because of this, everything has changed. Schools are closing. Mass gatherings such as concerts are cancelling. Professional and collegiate sports are cancelled. Public buildings are closing. In some places, even restaurants and shops are closing. Heck, even Disneyland is closed. The only people seeming to have a good time are those folks in the toilet paper industry. And most predictions seem to indicate that we’re not even at the peak yet. Infection rates are going to go up, and as a result more closures and cancellations and disruptions will occur.
In this post I’m not going to talk about the virus, or about really that much about our responses to it. Rather, I want to bring awareness to something that I haven’t seen often talked about: how virus control measures are impacting autistic people. This has been a massive and very sudden transition, and I suspect many autistic people (with me included) are struggling with this transition. So, I’d like to write on why everyone out there who knows an autistic person needs to be extra patient and understanding as this tough time passes over us, and if you yourself are autistic I’d like to encourage you to hang in there, stay grounded, and don’t be afraid to practice some self-care.
It’s also worth noting that I am absolutely not arguing against implementing measures to control the spread of the new coronavirus. We absolutely need to take action to protect people who are vulnerable, and to spread out the infection curve so that doctors don’t have to make decisions on who lives and who dies because the hospital doesn’t have enough equipment or staff to save everybody. I only want to open up a discussion on how we can support autistic people under the circumstances. I decided to write this post after reading Jordyn Pallett’s piece on the situation (which you can read by clicking here) and I’d like to expand on this topic.
As should be obvious from the media and social frenzy, many people are panicking over this situation. However, it’s actually important that you not panic. For one thing, unless you are literally about to be eaten by a Smilodon or some other large predator, panicking won’t actually help you, even in dire circumstances. Even though the human brain is hard-wired for it, it clouds judgement and typically impedes one’s ability to solve a situation. Using good judgement to make rational decisions to make There is no need to start hoarding toilet paper, guys.
But in the context of this article, I’d like to point out that it’s also important not to panic for the sake of the autistic people (or other autistic people) in your lives. Autistic people are very often emotion sponges. We are very sensitive to the overall emotional tone of an environment, and this can have a very big impact on us. For example, if someone in a room is upset, we’re likely to get very upset and overwhelmed too, even if the other person and their plight has no connection to us. Right now, the atmosphere is one of panic and anxiety, and this is causing serious issues for many autistic people, causing us to become emotionally disregulated and overwhelmed. It also doesn’t help that 80% of autistic people also have an anxiety disorder and autistic thinking styles tend to lead to catastrophizing, which in an environment of panic and anxiety only leads to serious functional and quality of life issues.
Therefore, it is important that you keep calm, think rationally, and be reassuring and emotionally stable for the autistic people in your life, to help reduce potential emotional overload and tole. Do your best not to spread unnecessary fear or panic about the virus situation.
Recognize and Respect Difficulties Caused by a Change in Routine
Many autistic people thrive in routine and/or have very specific routines set up to help us manage our sensory intake, reduce anxiety, manage executive functioning difficulties, and just overall stay regulated. The measures being put in place to combat the virus are also causing serious routine disruptions. The most obvious is the mass closure of schools which obviously is causing routine disruptions, but this also includes the closure of buildings, as many autistic people build routines around going certain places at certain times. Recognize that this is likely to be stressful, so be mindful and patient, and of course emotionally stabilizing. Do your best to maintain some semblance of routine within the limits of personal safety and what’s actually open (that last sentence applies to both autistic and allistic allies of autistic people).
Expect an Increase in Coping Mechanisms and Stress Responses
As this is an extra stressful time for all my autistic peeps out there, make sure you allow yourself to use your coping strategies and practice self-care. For the non-autistic people reading this, make sure you accept autistic ways of coping with stress and change, including things like stimming and hyper-focusing on special interests but also things like an increased need for control. Accepting these things is something that should always be done, even when not in the middle of a pandemic, but acceptance and understanding is needed even more than ever. Also, increased meltdowns and shutdowns are a distinct possibility.
Have a plan for procuring necessary items.
In one of the autism Facebook groups I’m in a mom posted about how her little autistic kid gets basically all protein from chicken nuggets from Wendy’s. Where they are all restaurants are being closed during the outbreak, and so she was very concerned that she would be unable to get Wendy’s nuggets for her kid to eat. Luckily the manager of a Wendy’s was kind enough to sell her wholesale several boxes of frozen Wendy’s nuggets so her kid could still have them to eat for the few weeks the restaurants would be closed. If you yourself or an autistic person you know need very specific items support you or stay grounded or stay comfortable I recommend that you get a few week supply because you may not be able to just run to the store in the upcoming weeks, depending of course on where you and how far the coronavirus spreads. I know I said earlier you don’t need to be stockpiling food, water, and TP, but it’s these items that most would view as “nonessential” that you should prepare to have a good supply of at home.
Recognize that autistic people may have trouble keeping to protocols intended to prevent the spread of COVID-19.
The CDC and WHO have both put out their recommendations for how people can help prevent the spread of the virus. This includes things like washing your hands more often and not touching your face. Unfortunately, many autistic people will have trouble sticking to these, mostly because of executive functioning and task initiation difficulties. Also, at least with me, there’s no way I’m going to be able to stop touching my face. I put my fingers in my mouth and I don’t even realize it, it’s just stimming. Similarly I’m almost constantly chewing on things, which I imagine doesn’t help prevent the spread of the virus in the slightest (I had been chewing on my shirt while writing and didn’t even realize it until I just wrote about it). So, it’s important that everyone, including autistic people ourselves, recognize that we will probably have more trouble protecting ourselves from COVID than other people.
The good news is that most people have only a very tiny chance of death or becoming seriously ill from COVID. The bad news is that everyone who contracts the virus could potentially spread it to someone else who is at a serious risk of death or becoming seriously ill due to COVID. Therefore, it is probably wise for all the autistic people out there (and/or their families) to make a risk assessment and decide if there are some alternate ways of protecting oneself given the circumstances.
If there’s one common theme you get from all of these topics, it’s that everyone needs to be more patient and understanding of autistic people during this time. These virus control measures are impacting autistic people in ways that many may not realize. However, I honestly believe that with a bit of accommodation and understanding we can all make it through this together. This too shall pass.
(And when I was planning this post I intended it to be short, but it ended up being kind of long… thanks for reading this far anyway!)