June 21, 2020

Covid-19 & The Rise Of Uncertainty

Advice from an Autistic adult on dealing with uncertainty and change during the COVID-19 pandemic

Lydia Wilkins

Guest Writer from Mademoiselle Women - Documenting life on the Autistic Spectrum

Covid-19 & The Rise Of Uncertainty

🖋Lydia is an Autistic UK-based journalist who has struggled with the uncertainty caused by the COVID-19 pandemic. Here are Lydia’s tips for managing the challenges.

🎨 Megan Rhiannon, a london-based Autistic illustrator, visualized these challenges and tips - check out more of her work here.

Uncertainty is one of the defining problems that Covid-19 has created. We are collectively facing this problem, but many people on the Autistic spectrum face additional challenges.

Our routines have been thrown into disarray, the rules we have to follow change regularly, ‘normality’ has evaporated, and there is no end date in sight for some of us, or if there is, it’s still full of uncertainty. Buzz phrases and vague recommendations are unhelpful - because what does social distancing really mean and what will the ‘new normal’ actually look like? I’ve compiled some resources and strategies that have been helpful for me, that I hope can be useful to you if you’re an Autistic adult trying to deal with the uncertainty that has become a constant.

In short, my tips for navigation this period:

  • Try to understand the constants
  • Make the guidelines the rules wherever possible
  • Have a routine
  • Plan through it
  • Keep informed but not immersed in news & updates
  • Know the accommodations and your rights

Please reach out on Instagram if you have other suggestions!

Try to understand the constants

There are, of course, lots of challenges specific to this moment in time that we need to be aware of in order to best respond to them. In a webinar about Covid-19, The Curly Hair Project (more information about their webinars is right here) pointed out there will in all likelihood be:

  • Increased anxiety
  • Coping with change
  • Confusion about information provided
  • Delayed processing of information
  • Family Stress

By being aware of challenges that the uncertainty will likely bring, we can have strategies ready and in place. It’s also helpful because we can be more aware of our needs and make plans for advocating for them.

Make the guidelines the rules

‘Rules’ and ‘guidelines’ have been debated continuously - particularly in the UK. They’re also constantly changing. However, keeping the spurious guidelines as rules, wherever possible, simplifies this. Purple Ella made this point in one of her videos (that you can watch right here)- take a guideline, and write it out as a rule. This way, everything is easier to understand.

For example, a ‘guideline’ may be to keep two meters away from people. Writing it as “whenever I have to go shopping or go outside to exercise, I must keep two meters away from anyone outside my household” is easier to understand and stick to.

This also cuts through ‘fluffy’ language - the sort that is designed to distort and/or misinform.

Rules vary from country to country; do keep this in mind. If you’re in the UK, the National Autistic Society Coronavirus hub has daily updates, resources and information.

Have a routine

Uncertainty can come from having big, unfulfilled spaces. When the lockdown happened in the UK, all my carefully laid plans, events, travel time all suddenly vanished - as did my routines. For me and for a lot of autistic people, routines and structures help with uncertainty - and having to accept the end (for now) of many of those routines I was accustomed to was difficult.

To me, having a routine helps with uncertainty. While people across the world are in lockdown, a routine inside the place where I live is helpful. This increases certainty and helps you structure your home time - you know what you have to accomplish, your goals, the deadlines, and what’s next (Tiimo is great for this kind of routine building and structuring!).

I also recommend filling out the time. Something to keep in mind: in response to the pandemic, there are many resources that have been made available, often for free. I have found that attending events online - like masterclasses in creating a CV, networking, etc. - adds an element of structure to my day. I know that these events will happen, and it thus concretely decreases the uncertainty brought about because of the pandemic.

Timers help, too. Timing yourself to complete a specific task can add structure to your day by enforcing an external start and end point.

Plan through it

Planning allows us to manage our needs and can be really helpful when dealing with uncertainty.

On Instagram I’ve noticed that bullet journaling seems to be a popular method - and it’s a method that can also help with executive functioning issues. You can adapt it to deal with uncertainty specifically as well. The bullet journal website has information about how to set up bullet journals, as well as the different trackers and graphs you can use.

Meal planning is also key. It’s a particularly challenging time for a lot of people, as certain foods have not been accessible and certain routines around food have been impossible. However, planning your meals can help. Meal planning can help eliminate uncertainty around foods - and sometimes around comfort foods.

If you struggle with interoception, and can’t always recognise when you're hungry, meal planning can be particularly powerful. Papier has a great guide about how to plan your meals.

Uncertainty can feel really overwhelming and heavy at times. Emma at A Cornish Geek has a post about incorporating positivity into your planning - and I think this is a great thing to have at this time in particular.

Keep informed but not immersed

The news is overwhelming. It’s okay to switch it off at times.

Uncertainty dominates headlines across the world and news stories are often written with the tone of ‘maybe’. The way information is transmitted is often chaotic - and, because of the ongoing response, there is information confusion.

Limit your news intake. It could be by timing yourself for five minutes and looking at a credible news website, or a quick scroll through Twitter. This goes back to planning and routine as well, which can help with this.

It’s good to stay informed about the current rules and regulations - particularly as rules start to change, but becoming overwhelmed by uncertainty is not. Also be sure that you check your sources. Make sure that you’re looking at a reliable source of information.

If you’re looking for a positive source of news, consider subscribing to Positive News.

Know the accommodations and your rights

We can preempt uncertainty to a degree by putting preventative measures into place.

The lockdown in the UK has increased powers to authorities - however not everyone is aware or has a nuanced understanding of the new rules. For instance, there are exemptions for masks when on public transport - yet this has yet to be transmitted across the board. However, I was concerned that my (sometimes) lacking eye contact can play into negative stereotypes, such as being perceived as a ‘liar’ - and not everyone is educated about what it means to be Autistic. Despite being able to verbally communicate, communication is still really difficult - and I have been stopped previously, just when walking, and became a ‘suspect’, when I had done nothing wrong.

Certain accommodations can be made that can help navigate the uncertainty in public space right now. For me, disclosing that I’m Autistic makes me feel more comfortable. I now have a lanyard with specific instructions to speak to me concisely; this has a disclosure card and hand sanitiser attached to it. I am also signed up to my local ID scheme, meaning my personal card will direct how people in positions of authority communicate with me. Some countries now require masks to be worn, such as in the UK and Germany. However, some territories have exemptions - such as in the UK. If you're concerned about not being able to communicate that you have an exemption, the Sunflower lanyard scheme also has a card you can buy, to show your exemption.

I hope these tips will help you manage the ‘new normal’, especially as some countries start to ease certain covid-19 restrictions. It’s important to remember that this is an exceptional time and challenges are inevitable. Please write on Instagram if you have any other tips that have been working for you!

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