Autism & COVID-19

E.M. Forster, in his 1909 story ‘The Machine Stops’, imagines a future where people live in isolated cells, never seeing each other, communicating via audio and video. Humanity’s steward is a machine that provides all comforts and meets all needs, save for one—the need for human contact.

One young man Kumo pleaded with his mother, “I want to see you not through the Machine… I want to speak to you, not through the wearisome Machine. I see something like you in this [screen], but I do not see you. I hear something like you through this telephone, but I do not hear you.”

First act

When I received my autism diagnosis, it gave me a sense of freedom. I had a clearer understanding of what I needed—fewer social expectations, less masking of myself, and limits on overwhelming sensory experiences. Read the post below for more information on that.

The upsides of an autism diagnosis

In March 2020, a pandemic unexpectedly granted my wish. And studies seemed to confirm that this is what I needed; research showed that when the COVID-19 lockdown began, autistics felt a release from the social challenges that plague us.^[1]COVID-19, Social Isolation and the Mental Health of Autistic People and Their Families: A Qualitative Study (Pellicano et al., 2021) There were fewer social pressures—I did not have to say no to visiting with friends because visits were now a violation of public health policies. The masking and camouflaging responsible for many mental health issues for autistics—such as anxiety, depression, and identity confusion—were no longer necessary.^[2]Social camouflaging in autism: Is it time to lose the mask? (Mandy, 2019) Everyone shared in the same conundrum, and we felt a sense of belonging. When I wanted to connect with friends, family, and community, I could do that online, and they with me. Work, doctor’s appointments, and therapist appointments would no longer include rushing, driving, parking, and awkward social conventions.

Walking down a quiet street, hearing only the cadence of my dog’s paws on the pavement, I sighed in relief. Sights, sounds, and overall stimulation were blessedly decreased. And we were soon to witness stunning images of animals exploring previously forbidden habitats. City vistas formerly unseen leapt into view thanks to diminishing air pollution.

Utopia had arrived at last!

This was not just in my over-enthusiastic imagination. Research published in January 2021 supports the ideal many of us had envisioned—an upside-down world, newly harmonious to autistics. After all, we were designed to thrive while others would wither in this age of self-isolation.^[3]COVID-19, Social Isolation and the Mental Health of Autistic People and Their Families: A Qualitative Study (Pellicano et al., 2021)

Second act

But like all good things, including utopias, they become distilled, harder, and harsher the longer they progress. As with children who threaten to feed themselves only candy when they grow up, this ideal quickly began to sour as it was replaced by painful fissures in the spirit.

In retrospect, the implications slowly crystallized. We like company—on our terms, and enjoy connection—when we have a level of control in how, when, where and for how long. Let’s face it, when we can control every aspect, then it’s terrific! Uncertainty intolerance drives anxiety for us.^[4]The relationship between intolerance of uncertainty and anxiety in autism: A systematic literature review and meta-analysis (Jenkinson, Milne & Thompson, 2020) The more predictable the environment, the less anxiety we experience.

For many autistics, the initial gains were to be soon overshadowed in the acknowledgment of loss. I noticed it first in others—the effect wrought through an absence of the social experiences they valued. That little chat with the cashier, the waitress’s brief touch, or the connection between dog owners as they discuss the joyful play between their animals when meeting on a walk. These incidental social contacts became non-existent or fraught with fear in a time when we most needed them—to calm our fears. Smiles from strangers disappeared, replaced with a furtive glance and the instant mental calculation that we were at least 6 feet apart. We were told that talking will spread germs, and laughing is worse still—we became quiet. And we became scared.

The everyday routines began to fade away. The need to shower, or even get dressed, to shave, disappeared. Ask yourself, how much have you saved on deodorant and shampoo? And what of the dependable, traditional holidays when we would come together to connect, share meals, and laugh? These were replaced, often politicized, with stay-at-home orders, Zoom calls, and a sad little candy bar if you could get it. Community connections like church, gyms, book clubs, AA meetings, and classrooms were shuttered.

And the services that we genuinely need have become harder to obtain just when we needed them most.^[5]Being versus appearing socially uninterested: Challenging assumptions about social motivation in autism (Jaswal & Akhtar, 2018) Many people have actually stopped accessing these crucial supports during the pandemic.

Easter was endured with optimism when we had no idea our hopes for Halloween, Thanksgiving, Christmas, and New Year’s would evaporate as well. And yet, the advertisements and television shows continued on, showing us the meals, the joy, the gifts, all things once good for us, that are now a potential death sentence. Numbers kept rolling in—they were not winning lottery numbers, but rising death tolls.

Meanwhile, mass graves and isolation assume a grim patina of normalcy. At the same time, people increasingly express a longing for physical, in-person meetings, discovering online interactions challenging, exhausting, and ultimately disappointing.

Third act

And where are we now? The general deterioration of our mental health bears witness to our new locale. The words of A.E. Samaan come to mind:^[6]A.E. Samaan quote on utopias | GoodReads

All utopias are dystopias. The term “dystopia” was coined
by fools that believed a “utopia” can be functional.

Touch is an essential human need that calms us and makes us feel safe. Its releasing of the chemicals dopamine and oxytocin is now radically depleted in us all. Covid has mediated human social interaction and communication via videoconferencing does not support communication through the sense of touch.^[7]Social touch in human–computer interaction (van Erp & Toet, 2015) This is having far-reaching effects as touch is essential for our wellbeing.

Much of my life did not alter due to COVID-19. The most noteworthy change was seeing patients online (although I did a fair amount of that before the pandemic). Because my kids came back from university, my social contact actually increased. And I had been on my annual London holiday with my son the week before the world shut down.

With March’s return, I find myself pining for our annual trip. The rest and rejuvenation from strolling the streets of London, visiting the museums and shops, playing chess, and sitting in bookstores reading and having tea. I am building a Lego version of Trafalgar Square where we always stay, but it is not really the same.

Autistic friends started saying that they find the lockdown hard. Other than one other person, the people I know are generally down, anxious, or angry. This affects my well-being more than anything else. Mirror–touch synesthesia, which allows me to empathize with patients, friends, and family, has been difficult during this time. Mirror–touch synesthetes have a higher ability to feel affective empathy.^[8]Mirror-touch synesthesia is linked with empathy (Banissy & Ward, 2007)^[9]The relationship between mirror-touch synaesthesia and empathy: New evidence and a new screening tool (Ward, Schnakenberg & Banissy, 2017) They can therefore experience the same emotions that someone else may be observed to feel. I am having a hard enough time dealing with my own emotions, let alone everyone else’s.

So, I found myself struggling with anxiety and depression, sometimes becoming quite manic about how to help those around me, to the point that it affected my own health. My best friend struggles likewise. When we are not careful, we can fling one another into a maelstrom of anxiety. Fortunately for me, I am antifragile—when you apply pressure to my system, I will end up doing better. I took two weeks off of work and took a neural rewiring course as well as a breathing course. I am feeling better now than I did in about six months.

Dynamic neural rewiring via the Dynamic Neural Retraining System (DNRS) works really well for autistics because we have alterations in our limbic system that affect the same areas of the brain like anxiety, depression, and PTSD;^[10]McMaster University Observational Study shows Significant Changes in Health Outcomes with Dynamic Neural Retraining System™️(DNRS) | The Dynamic Neural Retraining System namely the cingulate cortex (a gateway for negative stimuli), the amygdala (the brain’s alarm system), and the vagus nerve. Breathing exercises massage the vagus nerve resulting in activating our parasympathetic system, which ultimately calms us.^[11]Self-Regulation of Breathing as a Primary Treatment for Anxiety (Jerath et al., 2015)^[12]Vagus nerve stimulation promotes generalization of conditioned fear extinction and reduces anxiety in rats (Noble et al., 2019)^[13]The Neurobiology of Autism (Bauman, 2006)

We have become ever more disconnected from our community. At times, I do not want to go to work. In fact, I have cut down my hours of in-patient contact and am doing more writing and assessing. So there is an irony. Social isolation is driving this cycle, and yet, when we feel out of sorts, it is our tendency to isolate. Many of us are finding the substitution of computer-based or telephone interaction unsatisfying and inadequate. This has led to consequential or even dangerous adverse effects on our mental health.

I should not find this too strange, as we see higher suicide rates in health care workers, so I am proactive in watching my mental health. On the upside, Mr. Pluts (a.k.a. Pluto), my dog, has now realized a lifelong dream—he gets to go to work with me every single day. The showoff is in there 5 minutes earlier than me!

Touch

One of the critical elements missing for many of us, is touch. Physical touch is a basic human need for everyone, including autistics. Research shows that touch is a natural instinct that provides emotional security even for us with sensory processing challenges.^[14]Soothing the emotional brain: modulation of neural activity to personal emotional stimulation by social touch (Kraus et al., 2019)

Some touch is highly aversive to autistics—for example, clothing tags. But many of us crave touch—a firm hug, heavy blankets, or patting our pet.

A touch from another affects us differently than touching ourselves. When someone touches us, there is a social component. The brain lights up as it releases calming and joy-producing chemicals. However, when we touch our own skin, it actually causes the sensory neurons to stay silent. In essence, it desensitizes that part of our skin. This is why you can not tickle yourself.

In a study published in 2019, researchers scanned the brains of 27 neurotypical adults while the participants had their forearms stroked. Their brains’ social areas—such as the superior temporal gyrus—lit up with activity. When the participants stroked their own arms, the same regions showed no change in activity, which makes sense considering stroking your own arm is not a social activity. But unexpectedly, the participants’ basic sensory processing areas also stayed silent. So when they stroked their own arms, they desensitized that part of their body to touch in general.^[15]How ‘social touch’ shapes autism traits (Musser, 2019) | Spectrum^[16]Distinction of self-produced touch and social touch at cortical and spinal cord levels (Boehme et al., 2019)

Touch gives us a sense of ourselves. Not being touched can make us feel anxious, depressed, and in some cases, like we are losing our mind.

If a waitress touches us when handing us the bill, we will give her a higher gratuity. If you touch a bus driver when getting onto a bus, they are more likely to let you ride for free. In some places, like Japan, centers have opened where people can go just to be held. But now, touch feels weaponized. It feels unsafe, which has significant consequences for everyone.

So, what can we do to fulfill this need as the pandemic rages on?

• Well, the brain can be tricked into the experience of social touch.
• Repeated fantasies about a person can trigger dopamine and oxytocin to the extent you begin to bond with that person—psychologically and biologically. You create images of being touched in your mind, and your brain will respond neurochemically, even in the absence of tactile stimuli. The key is to imagine another person touching you.
• Many autistics and non-autistics alike have turned to alcohol, drugs, and food to produce these essential chemicals.

Oxytocin and dopamine not only contribute to our well-being but also help us handle stress.^[17]Happiness & Health: The Biological Factors- Systematic Review Article (Dfarhud, Malmir & Khanahmadi, 2014) Both of these hormones make us feel good. However, their absence makes us feel miserable.

Many of the positive effects caused by interaction, such as well-being, stress reduction, and even health promotion, are linked to dopamine and oxytocin released in response to activation of sensory nerves. Oxytocin and dopamine are released in response to touch, stroking, warm temperatures, good food, and during positive interactions between people or between humans and animals.

I invite you to pause, spend some time imagining those social contacts, getting a hug, and a touch on the shoulder. It will indeed contribute to your well-being.