Dr Lucy Anne Livingston examines the trials and personal costs facing many autistic people as they struggle to appear “normal”
A key characteristic of autism is the great variability we see between different individuals. This means that although all autistic people generally show a similar pattern of behaviour – difficulties with social interaction and repetitive and restricted behaviours and/or interests – these behaviours can manifest very differently from one person to another.
For a large proportion of autistic people, their behavioural differences are strikingly clear to those around them. From childhood, they may stand out next to their neurotypical peers – to parents, teachers and doctors – and as such receive a timely autism diagnosis as a child or young adolescent. However, there also appears to be a subgroup of autistic people who, at least in certain contexts, show very few autistic features. They may make good eye contact, demonstrate neurotypical-like social reciprocity and do not express obvious special interests. They are often told by others, including professionals, that they simply don’t “look” autistic. Because of this apparent non-autistic presentation, these individuals may not receive a necessary autism diagnosis until adulthood. It is this latter group that mine and Professor Francesca Happé’s research together has focused upon.
How is it then that “neurotypical-presenting” autistic people exist? The simplest explanation would be that these individuals are simply experiencing a milder form of autism; they show fewer autistic behaviours because they are less autistic. However, our research so far has showed this is unlikely to be the case. We investigated autistic adolescents and measured their observable autistic behaviours, as well as their internal mental processing using computerised tasks. In particular, we measured their theory of mind – the ability to understand other people’s minds – which is often found to be affected in autism. We found that a subgroup of individuals, despite profound difficulties in theory of mind, actually showed few autistic social difficulties when interacting with the experimenter. These individuals also showed other typical autistic characteristics, such as a tendency to focus on detail over the bigger picture. Therefore, this suggested to us that perhaps these individuals are experiencing similar levels of autistic difficulties and differences as other autistic people but they have greater ability to compensate for them. This is the compensation hypothesis of autism.
In our initial study, we refer to these individuals as “high compensators”; somehow they are able to get by in social situations without relying on a theory of mind, at least in the way in which neurotypical individuals do. Further analysis gave us some insight into how this might be possible. These high compensators demonstrated greater intellectual ability, and greater ability to plan and regulate themselves (known as “executive function”), than other autistic people in the study. Perhaps then, these autistic people are able to intellectually work out social rules and so-called “acceptable” forms of social behaviour, enabling them to regularly pass as non-autistic in social situations.
Further evidence that autistic people who compensate are nevertheless autistic, and often still require an autism diagnosis and support like other autistic people, comes from some qualitative research. We asked autistic adults to tell us in detail about the strategies they use to compensate for things they find difficult in social situations. We found that many autistic adults work really hard in social situations just to pass as neurotypical, with the experience of socialising often feeling like learning a foreign language or doing complicated mental arithmetic. For example, one person said, “we have a hell of a lot of difficulties and just because we hide them doesn’t mean they don’t exist”. This again suggests that, although it might not always be obvious to other people, neurotypically-presenting autistic people are still inherently autistic, experiencing both difficulties and strengths associated with the condition.
We also found that there is an array of different strategies autistic people use. These include learning when and how long to make “appropriate” eye contact and modelling neurotypical people’s gestures and facial expressions, as well as using sophisticated internal calculations to work out other people’s thoughts and feelings (for example, facial expression A + gesture B + context C = thinking D).
Finally, we found there are both positive and negative consequences associated with heavy use of compensatory strategies. On the one hand, strategies that enable individuals to at least “appear” less autistic on the surface may help them to gain employment and relationships and live independently.
On the other hand, compensatory strategies often come at a high cost to the individual, causing high levels of stress, depression and even suicidal ideation. Such individuals are also less likely to receive appropriate support and a timely diagnosis, as their difficulties are often overlooked by doctors and other professionals. One person who received their autism diagnosis in mid-adulthood said, “adults with undiagnosed autism consider suicide, because every day is like a scheduled and definite torture session. Even on a good day, my face and mind is exhausted from the performance that I have to put on”. This is also poignantly reflected in Duncan’s story (below). It is clear that he has reaped both the benefits and significant personal costs from using compensatory strategies throughout his life. Therefore, compensation – which enables you to appear more neurotypical than you truly are – may represent some kind of double-edged sword; as one person put it, “we exist in a harmful no man’s land between disability and normal functioning… we have enough skills to at least do something, but we always skip along that fine line, where at any time we could be rejected, hated or attacked for being different”.
As researchers, clinicians, parents and other professionals, then, we should be aware that compensatory strategies may not necessarily serve a positive role for all autistic people and be careful about necessarily promoting such strategies, for example, through social skills training. Training an autistic person to “appear” neurotypical may not necessarily result in the best outcome for that individual. Overall, much more research is needed to understand wide individual differences and complexity in autistic people’s experiences. As Duncan so aptly puts it, compensation is both a friend and a foe. It can be an “indispensable lifeline”, but this may come at the cost of sacrificing a happy and healthy life. Here, Duncan tells his story.
My life has been a story of all-pervasive coping strategies. I have a fulfilling career, but only thanks to a vast amount of support and perhaps a pinch of luck. Without my compensation mechanisms I’d have been able neither to carve out this life for myself, nor to survive it day-to-day. As I grow older, I realise just how heavy a toll they exact. These strategies get me through life, but exhaustion and frequent burnout is the price. With them, I can almost pass for neurotypical, but then I find I’ve got in too deep and I crash in a scrambled heap.
Since childhood, I have had to be constantly rescued from precipices of behavioural disaster, skewed perception, emotional anarchy, sensory turmoil and social despair. My parents three times moved house to accommodate my needs and give their bizarrely wild and unpredictable offspring a chance. Eventually, my diagnosis of autism made sense of the chaos and contradictions, but the everyday challenges endure.
An important strategy is eye contact. “Look at people when they’re talking to you”, my mother would encourage.
Today everyone thinks I do it very convincingly, but when I’m tired I struggle to maintain it. It’s a conscious, learned skill, and lots of energy goes on “doing” the eye contact at the expense of fully digesting what the person is saying.
I like people and I love life. I learned to watch and analyse others, creating my own persona in order to swim rather than sink. I observed social successes and noted precisely how they were achieved. I scripted and rehearsed conversations, and copied behaviours became my own as I painstakingly matched them to the situations I met. But I was clueless inside, calculating my reactions without nuanced understanding. Often, I have appeared to be socially confident and adept when I’m a crashing mess of confusion, so the support, explanation and reassurance I’ve desperately needed are the last thing anyone around would think to give me. Sometimes I pull it off, but sometimes I don’t, and inner bleakness and feelings of unworthiness result. Whenever I said something that worked in a conversation, and I felt I’d said something that contributed a flowing energy to the dialogue and didn’t stick out, I felt an inner swelling of pride and success.
Another important strategy is “layering”. I’m invariably gripped by obsessive anxieties which have to be constantly thought through. So I layer my thoughts and attention, packing the intrusive thoughts onto a lower level of processing in order that I can proceed with the events of the moment.
The careful management of my schedule is another strategy, and I’d highlight two typical instances. Firstly, I struggle to keep the bigger picture in mind and I become obsessively absorbed with one topic. Counteracting this is vital to maintaining equilibrium and good mental health. Secondly, my compensatory strategies exact a heavy toll on my energy, so it’s essential that I plan ahead, spreading out my work pattern with frequent breaks to recharge. My desire to test and flex my social muscles has often led me to over-socialise, but social situations are exhausting and can be baffling, so I have to ration them.
Compensatory mechanisms form the glue that holds my fractured being together in the face of the world. I couldn’t manage without them, but sometimes their camouflage is as much my foe as my indispensable lifeline.