Thriving at Home during the Pandemic: Authentic Tips for Resilience

By Andrew Nelson, Ed.D., and Brandon Stump, J.D., MFA | April 29, 2020

Life is hard right now. It can be especially hard for autistic people. Recent events surrounding COVID-19 and the global pandemic are forcing us to adapt. We are confronted with radical shifts in our schedules, modes of communication, social demands and safety risks. The pandemic has imposed adversity in the form of challenges with health, economic stability and general well-being. Our resilience is determined by our ability to grow through those challenges.

Two adults - one autistic and one professional interested in ASD and resilience – recently talked about the pandemic as experienced by autistics. Below are the tips and ideas generated during that conversation.

Strange Rules: The rules governing our choices can feel illogically gray right now. We are told it is safe to eat take-out food, but we must wash groceries or produce. Parks are often open to the public but certain features may be closed. These changing rules don’t always make sense.

Tips:

  • Ask yourself: “What would I choose to do to keep myself as safe as possible while understanding the principles of science governing the situation?”
  • For example: Understand how long the virus lives on surfaces and how it spreads, and how that relates to risks.
  • Find a few trusted people with expertise you can contact to help you navigate inconsistencies or unfamiliar rules.

Long Periods of Time at Home: Home life is full of all kinds of task demands and new routines. There are likely more stops and starts and interruptions in your routines. This can be exhausting.

Tips:

  • Work or complete tasks in blocks of time rather than longer sustained arcs.
  • “Chunk” tasks like cleaning or responding to emails into groups to avoid exhaustion.
  • This will leave longer blocks of time for recovery from tasks or demands.
  • Adapt your interests to life at home if possible.
    • Here’s an example from Brandon’s experience: “I like to browse at stores, it’s comforting to look at items on shelves. But random online browsing is exhausting because there are too many choices. So I go to one specific site of interest like the Nintendo Switch online store to browse like I would out in the community.”

Connection: You are probably seeing all kinds of information about people connecting via FaceTime, Zoom or other social technology. You may also be seeing other autistics say they are enjoying some down time from in-person social demands.

Tips:

  • It’s okay to take time. Don’t feel guilty if you don’t need tons of social connection.
  • Connection doesn’t always have to be human. Routines around objects and interests can be very satisfying.
  • This could be a great time to clean, organize and categorize belongings in your home.
  • Learn the inner quality of routines or tasks that bring you joy, and look for other ways to find or mimic those qualities at home.
    • Here’s one example that works for Brandon: “I like to sort and organize my favorite items like comic books and holiday decorations. Now is a great time for me to go through old boxes of belongings to organize items I haven’t used or looked through in a long time.”

Managing Phone, Email and Digital Demands: Boundaries can be very hard to set with digital interactions and demands. That constant pressure can be draining and unrelenting.

Tips:

  • Unplug and put digital items in another room if needed to create actual space between you and the demand.
  • Turn things off proactively if stress is building.
  • Use “out of office” replies on email if needed to create space to refresh your energy.

Fatigue Is Not Failure: We have the tendency to feel guilty about getting tired and needing to refresh or recharge. We need to recognize that fatigue is natural, especially during these stressful times.

Tips:

  • Listen to your body’s signals within reason. It can be hard when your body sends inconsistent messages.
  • Understand that your own interoception (messages from your body) can take days to figure out.
  • Know your own bandwidth and how much can you engage before needing downtime. Recognize the importance of your downtime.

Sensory: Being at home can actually be a plus when it comes to sensory needs. You can build or access your preferred sensory supports. The current situation may disrupt your meal preparation and personal hygiene routines.

Tips:

  • Frequent handwashing may increase sensory discomfort. Keep lotion in stock to help with skin irritation.
    • From Brandon: “All of the handwashing is making my hands feel chalky. Lotion is easy to find right now, so I bought a few extra for each sink in my house and a few for the places I sit to read or watch movies.”
  • Sensory issues around food and textures can be intense. Think about the characteristics and quality of foods you like and how can you stretch that enjoyment in other ways with other food options.

Object Permanence: The pandemic has all of us thinking about scarcity as things like food and toiletries can be harder to get. Even food and grocery delivery can have long delays.

Tips:

  • In terms of food purchases, make choices that prioritize items that are less perishable.
  • Ask yourself, “What do I truly need right now? How many of those needs can I access individually? How many of those needs do I need partnership with others to acquire?”
  • Also, ask yourself: What are your wants? How many of those wants can you access now? Can you dream about having the wants in the future?
    • Here’s one example of how Brandon is approaching this: “I love a certain kind of cereal. When I ran out recently, I got very anxious about wanting more but not being able to go to the store. I decided to make my own cereal using similar tastes and textures. Knowing I had the cereal made me feel calm.”

Summary:

  • Look deeper to explore the qualities of the things that bring you comfort and happiness, and see if those qualities can be found in new items or experiences.
  • Make peace with the fact that there are sometimes no answers, and work to accept things you cannot change.
  • Reduce the pressure you put on yourself.

 

Andrew Nelson Ed.D.

Andrew Nelson, Ed.D. is the Director of Direct Services at the West Virginia Autism Training Center at Marshall University. Dr. Nelson works locally and globally to help grow autistic leadership, train others in self-advocacy principles, and teach theatre-based techniques to support people with autism. He founded the Autism Theatre Network and is the author of several papers on autistic resilience, self-advocacy, theatre, and role play. Dr. Nelson is also the founder of the NeuroAdvisor Group LLC, an international team of neurodiverse consultants interested in increasing access and inclusion through tech, architecture, design, art, and education. 

 

 

Brandon Stump

Brandon Stump, J.D., MFA, is a Visiting Teaching Associate Professor of Legal Writing at the WVU College of Law where he teaches two sections of Legal Analysis, Research, and Writing (LARW). Prof. Stump appears to be the first openly Aautistic law professor to ever publish a law review article. One of Prof. Stump's primary goals is to change the understanding of diversity in higher education to include disability and to add disabled perspectives to the canon. Prof. Stump serves as co-advisor to OUTLaw, the College of Law's LGBTQ advocacy organization. Before teaching at WVU, Prof. Stump taught as an Adjunct Professor of Legal Research and Writing at Duquesne University School of Law in Pittsburgh for three years. 

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