For more than a year now, we’ve been dealing with the challenges of the global COVID-19 pandemic.  This has had a devastating impact, both in general and in particular on many disabled people.

Most obviously, COVID-19 has killed millions of people worldwide, and neurodivergent communities have been disproportionately impacted.  The death toll among people with intellectual disabilities in residential group homes and institutional settings has been catastrophically high.  Unfortunately, discrimination against neurodivergent people – again, particularly people with intellectual disabilities – was highlighted by efforts to prioritize saving the lives of non-disabled individuals in triage decisions.¹

The pandemic has also had immense social and economic consequences.  It has exacerbated the social isolation many neurodivergent people already faced.  The pandemic has resulted in the loss of many jobs, especially for those in precarious employment: a category encompassing a disproportionate number of neurodivergent people.  Many people have been essentially trapped in homes where they face family stress, excessive caregiving demands, sensory stress, or even domestic violence.

Young neurodivergent adults, such as many of the people in the peer-support community I facilitate at UC Davis, are having a hard time finding employment, volunteer, and research opportunities.  This could have long-term impacts on their careers.

Of course, this is only a tiny sampling of impacts.  The list goes on.

Given all these challenges, it’s only natural that we have focused on the challenges brought on by the COVID-19 pandemic itself.  But as we slowly seem to be getting closer to “returning to normal,”² I believe we need to spend more time thinking about the challenges that transition out of the COVID pandemic will bring.

I feel like our rhetoric on COVID-19 is still presenting the idea of a “return to normal” – once safety from COVID-19 is assured, of course! – as a solution, as something to be hoped for.  However, for some neurodivergent people, at least those of us privileged enough to have been able to work remotely from a safe environment, the end of the COVID-19 pandemic may be a source of anxiety.

Autistic Burnout

The anxieties many of us have about returning to normal probably relate to autistic burnout.  Autistic adults have been talking about the concept for a long time, and it was finally documented in research not long ago by Dora Raymaker and the rest of the AASPIRE team.  Essentially, autistic burnout occurs when the extra day-to-day challenges we often face as autistic people – like the need to hide who we are and camouflage ourselves to appear like neurotypicals, or the need to cope with sensory distress and overloads – become too much for us.  Burnout leaves autistic people exhausted and stressed, and it can exacerbate sensory distress and make it harder to do simple things.

Those autistic people who are privileged enough to shelter in safe environments during the pandemic have been spared many of the daily stresses and demands that can lead to burnout.

A Relief from Life’s Pressures

Furthermore, one probably doesn’t need to be in full-blown burnout to derive some comfort from an interruption to daily demands.  These days, I don’t personally face many of the stresses that induce burnout.  When the COVID pandemic ends, I still won’t face much sensory distress, because I have enough autonomy to structure my life to avoid most overwhelming sensory stimuli.  I don’t really need to camouflage my autism, because I work in the autism research field, which makes it easy to disclose that I’m autistic.  Nevertheless, I’m a highly introverted person, and it takes energy to be going around and interacting with people.

I also definitely have some “autistic inertia,” at least when it comes to doing things that involve physically relocating myself.  I might also have a weak “behaviour activation system,” in at least some domains.  I’m perfectly happy to just sit around in a safe environment, which I’m privileged enough to have, and get things done on my computer.  I just don’t really feel a strong motivation to do much else.

Are these experiences all autistic people have?  Certainly not!  We’re a heterogeneous group – I’m probably a bit of an outlier in just how happy I am when left to my own devices.  Furthermore, as I noted earlier, we’ve faced more than our fair share of pandemic impacts.  Some of us are indeed eagerly looking forward to the end of the pandemic.  But I’m definitely encountering lots of people who have found at least some aspects of the COVID-19 pandemic to be something of a respite, and who are starting to experience some anxiety about things going back to the way they were.

COVID Transition Anxiety

That brings me back to the central point of this post – how the end of the COVID pandemic may be becoming a source of stress for many.  Most obviously, much of this fear is manifesting in relation to the coronavirus itself.  Many people who are compelled by the lifting of restrictions to go back to their daily routines before the pandemic has fully ended are understandably worried that they’ll be exposed to a dangerous viral disease.  This is only to be expected, and it’s a perfectly sensible fear given the very obvious health risks associated with the virus!

That said, I also suspect the virus itself is probably the most socially acceptable justification for anxiety about the return to normal.  But I believe the issues go beyond this immediate health danger.  Some of us have spent a long time now being sheltered from the daily pressures of the world, and little demands that we might once have coped with out of habit might now be more intimidating.  Some of us might have been appreciating the more relaxed pace of the COVID-19 world, and the prospect of a return to full speed ahead mode might also be alarming.

Again, I’m not saying all autistic – let alone neurodivergent – people would experience these feelings.  First of all, this probably only applies to privileged people who have a safe place to shelter in.  Secondly, it doesn’t apply to all of those privileged people; some might not have enjoyed COVID isolation and might be eagerly anticipating the return to normal.  Moreover, I suspect many of us have mixed feelings about the end of the pandemic.  There are certainly aspects of COVID life I haven’t enjoyed.  I haven’t been able to make progress on some research projects I was looking forward to.  I haven’t seen any of my family members since before the pandemic began, and there have been important events affecting the family that I’ve missed.

But at the same time, gradually moving out of my sheltered bubble is a prospect I do associate with some trepidation – even though I’m the one choosing to pursue in-person (rather than online-only) research projects!  What about those who don’t have that freedom, and who could face a return to a reality that they haven’t and wouldn’t choose for themselves? Or those who, because they lack that freedom, find themselves anxiously and uncertainly waiting to see what decisions others will make on their behalf?

Moving Forwards

How do we resolve this?  Well, I’m a strong believer in the importance of the individual autonomy of neurodivergent people, so I think we should give people some flexibility to decide what works best for them.  And I’m not just thinking of neurodivergent people here – I’m thinking this flexibility should be offered to everyone.

I’ve previously commented on how I think that our society is actually in many ways highly inflexible towards neurodivergent people – ironically, given our habit of always blaming the autistic person for being inflexible.

The COVID-19 pandemic has shown us that there are different ways – virtual ways – of doing many things were previously done in person.  Some of these virtual alternatives seem likely to stick around, but I’m worried that others will whither away post-pandemic.  Barring emergencies like global pandemics, we shouldn’t impose a virtual modality on people, but neither should we require people to do things that can be done virtually in person.  Flexibility and hybrid models, offering as many choices between virtual and in-person as possible, seem like the right path forwards.

I should also say that I don’t just mean these choices should be offered for adults in jobs and post-secondary education: I’ve already ranted at length about the need for children to have some flexibility about the kind of environment they are educated in.

Of course, this doesn’t mean just offering a theoretical choice, while in reality pressuring people towards one option, or devoting extra resources towards one option in a way that introduces an inequality between the options that didn’t exist naturally.  It means a real choice, wherever that is possible.

Acknowledgement: A lot of people have helped me come to recognize the importance of these issues, but I have to particularly thank Erica Mineo.  Erica is the vice president and a co-founder of our peer support community at UC Davis and has definitely helped me understand how the uncertainty and pressures of the end of the pandemic have been affecting many students.

1. Of course, this sort of discrimination is not a new phenomenon or unique to COVID.  People with intellectual disabilities have long faced a greatly elevated danger of being denied life-saving organ transplants.
2. Granted, it’s probably easy to be overly bullish on predictions of a “return to normal.”  Since the pandemic started, I know I’ve repeatedly had to push back my mental predictions of when things will return to baseline in different domains of life.  Despite immense progress in the vaccine rollout in many countries, such as the United States, there are still numerous challenges.  Due to variants, anti-vaxxers and the vaccine-hesitant (I’m alarmed to see that daily vaccination rates are already falling in the USA), the unavailability of vaccines for children, and of course the massive international inequities in the distribution of vaccines, I totally realize the “return to normal” may be a slow process, even in domains where the pandemic doesn’t bring about more lasting changes.