We all know about the downsides of quarantine, but Karen Massey shares some surprising upsides to lockdown for children with autism.
A core component of Autism is a difficulty with flexible thinking, and people with Autism like and need routine, structure and familiarity. As well-meaning family members, friends and professionals, we often assume that the regular routine of attending school, college, work or community activities is necessary in the lives of those with Autism whom we know and love. After all, surely long periods of unstructured time will be difficult for them to cope with? However, even with a strict routine, life is unpredictable and anxiety is commonplace. If something does not go to plan, anxiety increases. Sometimes an unforeseen event occurs – cue an increase in anxiety. Anxiety can lead to a meltdown for many; in others, it leads to a social withdrawal. Anxiety can often be recognised as part of someone’s Autism diagnosis, but it may be so debilitating that it is seen as an additional diagnosis of General Anxiety Disorder. Although research is not clear as to the proportion of people with Autism who also display symptoms of anxiety, the link between the two is not surprising. Untreated, anxiety in individuals with Autism can lead to depression, self-injurious behaviour and obsessive compulsive behaviours. Selective Mutism and Pathological Demand Avoidance (PDA), both commonly associated with Autism, also stem from anxiety.
Social situations are anxiety-inducing for many reasons. As mentioned above, an unplanned and uncommunicated change in routine and predictability is one factor. In addition to this, there may be unpleasant sensory information in the form of sights, smells and sounds. Then there is the notoriously tricky challenge of navigating the thoughts and feelings of everyone else around, when identifying and responding to one’s own thoughts and feelings is hard enough. Social situations can increase anxiety before they even begin as you anticipate how things will play out beforehand. During the event, it may be a test to simply survive the sensory overload, the conversations, the facial expressions and the unpredictability at every turn. Even when the situation is over, anxiety may remain as you recall and replay events, wondering if you responded in the correct way.
The impact of the lockdown
So how has the current lockdown in the UK impacted people with Autism and their anxiety? Has it led to an increase in anxiety? Certainly it has for those people concerned with the virus itself. Children whose communication skills are limited may have been getting more frustrated than usual, leading to challenging situations for them and their families. However, perhaps having a life that is based around strict routines has actually benefited many people on the Autism spectrum. The reduction in social interactions has been welcomed. Not having to attend school, college or work, removing the daily social expectations, even if they are seen by others as a beneficial component of the weekly routine, has been an immense relief for many. There will still be rigid daily routines, but they are likely to now be led more by the person with Autism, increasing their control and thereby decreasing anxiety levels.
When talking to people about this, a familiar theme has been that life is not so different for those with Autism. After all, social distancing rules are hardly new if you have spent your life trying hard to avoid large gatherings, or crossing the road to avoid close contact with another human being. In fact, there is a sense that for once we are all in the same position. Both adults and children with Autism have commented how their anxiety has decreased massively. This is due to a stricter daily routine, more freedom to regulate arousal states due to not being at the mercy of someone else’s activity schedule. There is also a security of only being around close family who best understand their nonverbal cues and subtle communication signals. For some individuals, the usual requirements of attending school or work induce severe anxiety and panic attacks. This is especially true for children and adults with significant demand avoidance or diagnosed PDA . Therefore, while society as a whole may be finding lockdown life challenging and isolating, for a group of people with Autism, after adapting to the initial changes, this new way of life is actually a great relief. They have found people to be more accepting of their social needs and are experiencing much lower levels of stress. So much so, that the threat of a return to normality in itself is stirring up new waves of anxiety. Hopefully, the experiences of everyone in society during these past few weeks will have helped to increase awareness of social behaviour, of stress and anxiety, and also of the various coping strategies that seem to benefit us all. Keeping the focus on mindfulness, appreciating nature and prescribed daily exercise, along with a new sort of routine, would be a good start.
About the author
Karen Massey is an experienced Speech and Language Therapist working both independently and for the NHS. She specialises in working with children and young people on the Autism spectrum.