By Liv

There is a myth that autistic people do not require or strive for relationships with others in the same way that our neurotypical peers do. Relationships are a basic human need; one that leaves me, as an autistic woman, constantly listening, observing, searching for any hint of shared experience that might connect me to another human. Usually this requires me to enter into the neurotypical world to move towards an understanding and appreciation of a neurotypical way of experiencing and thinking.

Observing the impact of being in lockdown on others, I have been able to draw parallels with some of the difficulties I face through my autism. I can understand the frustration and fear people are experiencing as a result of all the change and uncertainty. I live the anxiety people feel as they tackle previously unremarkable tasks, like shopping. I know the power of routine and the need to stick to this. I feel the agony of social isolation; of being unable to meaningfully interact with others, however much you might want to.

Like lockdown, being autistic is not a heterogenous experience. While both share characteristics, the lived experience for the individual is very different. Unbeknown to you, the ‘new normal’ that lockdown has created has bought you closer to how I experience the world. I hope that by reflecting on the difficulties that you currently face, you will gain a deeper understanding of and empathy for the neurodiverse in their struggle to navigate a neurotypical world.

Change and uncertainty. It is a common assumption that an autistic person will struggle with change. In fact, it is most often the uncertainty that change creates rather than the change itself that is the issue. Given enough warning, choice, control and information about what is going to happen, change can be manageable for many autistic people.

Think back to the weeks leading up to lockdown, when unclear, conflicting and inconsistent responses to and messages about the virus from the government left members of the public confused, angry and panicky. I wonder how you felt during this time? Reflect back on this, and how those close to you reacted. Now imagine how exhausting it would be to experience these feelings every time something changed without warning, clear guidance and support. Imagine how anxious you would feel; how you might constantly try to anticipate any changes to your routine or plans and what all the alternatives might be. Imagine how you might try to control your life and those of the people around you to minimise any uncertainty, to lower the anxiety you are experiencing. Imagine how you might limit the places you go, the people you see, the activities you do in an effort to make life more manageable.

Rules and rigid thinking. In many of her speeches, Greta Thunberg talks about people’s perception of her as having black and white or rigid thinking. Greta lives her values; the fact that we are in a climate crisis is clear to her and she campaigns resolutely to bring about change. In doing so she also demonstrates the more positive side of what is often pathologised as rigidity of thought. And while I ask you to empathise with the less helpful side to rigidity of thought, and how it can impact on an autistic person’s social and communication skills, I feel it is important to remember and appreciate the immense power of what can also manifest as a strong sense of right and wrong and how this can enable autistic people to be fiercely loyal friends and advocates, to fight for what is objectively right and ethical, and to make a difference, just as Greta is doing.

We now have clear rules regarding how we should conduct ourselves during lockdown. For many this may have initially helped people feel more secure. Quickly however they have created a new source of anxiety. How do you feel when you observe someone breaking a lockdown rule? Conversely, what if you feel anxious about how your behaviour may be perceived by others? Will you be one of the many victims on your community social media group who is publicly shamed for an innocent infringement of the rules? Or perhaps your actions will be taken out of context or misunderstood as you head to work as a key worker out of uniform.

Try and sit with the anxiety of every interaction feeling like this. Imagine knowing you’ve messed up more times than you can remember and you can’t understand why, even though you’ve learnt the ‘rules’. Imagine the sense of betrayal, uncertainty and anxiety. Consider the frustration when there are nuances and exceptions to the rules, which others seem to be able to apply with ease. Imagine you have to learn by error, playing and replaying each interaction in your head, checking for inconsistencies and mistakes, creating and learning more rules. Imagine the exhaustion. People will say your behaviour is rigid, that your thinking is black and white, but you are trying to keep yourself safe, trying to reduce the anxiety, trying not to spread the virus, trying not to end up as a social pariah.

Routine. By now you may appreciate the constant anxiety that comes with autism. One of the tools many people with autism will use in an attempt to manage the anxiety is to establish a consistent routine.

As we began lockdown experts recommended that everyone form a routine to help manage the ‘new normal’. We have a shared understanding of the value of creating predictability within the chaos. If you didn’t follow this advice what was it like for you? If you now have a routine, how has it helped, and how does it feel when your routine is disrupted? However, if there wasn’t a shared understanding of the need for routine, would you be as sensitive to and understanding of this need in others?

Sensory processing. A majority of autistic people have difficulty processing incoming sensory information. There will be a mix of hypo (too little) and hyper (too much) sensitivity to different sensory input, which may differ for the individual depending on environmental factors, levels of fatigue, mood etc. Sensory processing issues can affect every aspect of our lived experience including the clothes we wear, the places we go and our receptive and expressive communication.

Lockdown rules have meant that a lot of social and business interactions have shifted to online platforms. What has this been like for you? Has your internet been too slow, did pictures and sound become distorted and out of sync? How easy was it to have a meaningful exchange of information, to connect with people, to concentrate, to read body language, and to follow the thread of a discussion? How did you feel afterwards? Now consider navigating your whole life through a dodgy Skype connection!

Social isolation. This is likely to be the biggest and most obvious area that links lockdown and the lived experience of the majority of autistic people. As I have already described, not only is it challenging for autistic people to connect and communicate with others, but the environment we are expected to function in is too challenging for many of us to tolerate for long periods, which reduces the chances of being able to meet new people, socialise and engage in shared interests with friends. Personally I feel it goes deeper than that; I feel that my lack of understanding of and connection to the shared experience of the neurotypical majority cuts me off from being able to feel a sense of belonging, community and deep connection on an individual level (with the exception of a select few very empathic friends).

Many people have been struggling with social isolation during lockdown. We have been encouraged again to use online platforms. People have been having zoom parties and quizzes, online Zumba and yoga classes, joining choirs and community groups. How have you been managing? How have you felt when you have been unable to meet up with friends however much you might long to? Have you felt a desperation for meaningful connections with others?

When I first started thinking about the similarities between the autistic lived experience and lockdown I felt like the lockdown world was, at last, designed in our favour. I thought the imposed rules and new clear social norms, shared routines, quieter shops, shared experiences of social isolation not to mention everyone having a specialist subject - Covid-19, would make the world, temporarily easier to navigate!

As time has gone on and I have experienced the reality, the experience has not been what I had hoped for. You may be having similar experiences as I would ordinarily, but my autism hasn’t disappeared during lockdown, and I find myself just as much at a loss as you are. And although lockdown will undoubtedly end for you at some point, my autism will not.

So when we return to some semblance of normality, I hope you will remember what ‘normal’ life can be like for the neurodiverse. If you see someone resisting change, consider that they may not be awkward or stubborn. If you encounter someone who seems unable to adopt a different point of view or alter their routine, empathise with the anxiety and exhaustion they may be experiencing. If you are perplexed by someone unable to understand what you are saying, do not think this reflects their level of intelligence. And if you know there are people in your community who are alone, take the time to enter their world and find out how you can connect with them.

A few side notes:

  • I have tried to frame each area I explore positively, rather than with a focus on dysfunction, as experiences of autism are so often portrayed. Being autistic is being different not dysfunctional, the issues that we face as autistic people are most often as a result of having to get by in a world which shows little empathy for, or appreciation of, our different ways of experiencing and interpreting.

  • I have referred to myself and autistic people in general without using person first language because for me (and many others) I am no more separate from my autism than I am from my personhood. Autism is not an add on that might be, or should be, removed or ‘cured’. My autism is integral to my identity and how I experience and interact with the world, I am not a person with autism, I am autistic.

  • Please do not view this article as an invitation to say, ‘we are all a little bit autistic’. Yes, autism is a spectrum, but it is an experience in it’s own right with very clear differentiations from the neurotypical experience. Please do not belittle our struggles by using phrases that attempt to dilute and ultimately confuse the boundaries between a difference that, whilst it does not make people less, has a significant impact on how we understand and relate to our shared world.

  • Please remember that autism is a heterogenous experience and whilst I have based the observations in this article, not just on my own experiences but from years of working with adults with learning disabilities and autism, I would encourage you to be person centred and flexible with your application of anything you take away with you.