The concept of “compensation” makes sense of several autism puzzles

By Alex Fradera

A process involved in neurodevelopmental disorders that we are only just beginning to understand is “compensation” – the way that a deficit can be partially or wholly masked by automatic mental processes and/or deliberate behavioural strategies. For instance, a person with dyslexia may achieve typical levels of reading ability after an earlier diagnosis, not because the disorder has gone away (subtle tests might show continuing problems in phonological processing, for example) but through the use of behavioural strategies, such as reverse-engineering a tricky word from the meaning of words around it. In a new review in Neuroscience and Biobehavioral Reviews Lucy Anne Livingston and Francesca Happé, at the Institute of Psychiatry in London, take us through what compensation might mean for autism.

Compensation in autism could make sense of several puzzles. One is how high-risk individuals – with an autistic sibling, and showing markers for the disorder at the age of one – sometimes beat the odds and go on to seemingly normal development. Similarly, some individuals are diagnosed with autism, but in adulthood achieve what is termed a “good outcome”: functional social relationships, work life, and general independence. These cases could be explained by compensation mechanisms kicking in at different times. Meanwhile, people who remain undiagnosed until later life could have been relying to that point on compensation mechanisms that have become ineffective, perhaps because their lives have become more complex.

Moreover, scientists are reassessing the prevalence of autism in girls and women, now understood to stand at around one female for every three males according to one analysis. The reason for the historical under-estimate – even fairly recently standing at a male to female ratio of four to one – and for why autism may present differently in women (who are often diagnosed later in life), may again be compensation; one source of evidence for this is that women with autism report a higher inclination to camouflage their difficulties in order to fit in socially.

A core deficit of autism is an impairment in Theory of Mind: difficulty figuring out what people are thinking in order to make sense of their behaviour. Livingston and Happé asked themselves how this might be compensated. It’s possible that what neurotypical people achieve implicitly can also be achieved explicitly, by reasoning through situations to predict behaviour and motives. If true, it’s likely higher intelligence would assist this compensatory process. Consistent with this account, intelligence is one of the strongest correlates of “good outcome”; it also tends to be higher in the unaffected siblings of those with autistic spectrum disorders (ASD), but lower in women diagnosed with autism.

Another factor likely to be relevant to autistic compensation is “executive function” – the suite of meta-cognitive functions that includes planning and inhibiting action, flexibility in thinking and switching focus. It’s easy to see how being able to prevent undesirable behaviours and plan appropriate social responses ahead of an interaction might prevent visible faux pas and allow an individual to pass as neurotypical. For a long time, executive dysfunction was seen as core to autism, and Livingston and Happé point out this could be because when that dysfunction was present, compensation was lacking, making autism symptoms more obvious.

For autistic people and those around them, understanding the nature of their compensation may be very useful. Compensation may be deep or shallow: Livingston and Happé refer to the development of echolocation by blind people, which genuinely restores some of the functionality of sight (i.e. deep compensation), versus the use of a cane, which serves a much more circumscribed role (shallow compensation). In autism, two individuals might present as equally adjusted to social situations, such as responding to jokes, but the one relying on a shallow strategy (for example, join in whenever other people laugh) is vulnerable to making errors and may struggle in novel situations (e.g. a one-on-one date).

Moreover, compensatory strategies are likely to exact a cost, drawing on resources that would normally be invested into other tasks. A common complaint from those on the spectrum is it’s hard work to “act normal” – as recently expressed by TV presenter Chris Packham (see footnote). Diagnosed with Asperger’s later in life, Packham says he was “forced to develop” a number of coping mechanisms. Individuals who spent more of their life undiagnosed – and hence without a way to make sense of their difference – are likely to have spent extended periods working to pass invisibly in society, and this may go some way to explain the higher levels of suicidal ideation in this group – at 66 per cent, far higher than in those diagnosed in childhood. Understanding different forms of compensation and their consequences may be an important step in helping autistic people manage their mental health more effectively.

Although it’s early days, we’re starting to understand how to identify compensation in autism. Work with “good outcome” individuals shows that with sufficiently sensitive tasks, such as anticipating where people direct their gaze in complex social scenarios, it’s possible to pick up Theory of Mind deficits that were otherwise undetectable. The next step, argue the authors of this new review, is to develop a gold-standard measure that we agree captures the core, deep marker of Theory of Mind deficits in ASD, just as precise phonological measures do in dyslexia. Through this, we can not only understand the disorder at a scientific, medical level, but we can arrive at a personalised account of the ways individuals live with the disorder, the situations that may challenge them the most, and the psychological toll that they pay to pass in neurotypical cultures.

Conceptualising compensation in neurodevelopmental disorders: Reflections from autism spectrum disorder

–Image: Chris Packham: Asperger’s and Me was broadcast last night on British television and is available in some regions on BBC iPlayer. Naturalist and TV presenter Chris Packham described how he hid his autistic traits for most of his life

Alex Fradera (@alexfradera) is Staff Writer at BPS Research Digest

13 thoughts on “The concept of “compensation” makes sense of several autism puzzles”

  1. I still struggle with if getting a diagnosis in my mid 40’s is functional. One of my key camouflaging strategies was always what I call ‘propping’. At school when I was 9, I would commonly take 20 or so objects, such as a crystal radio set that I had built and housed in a Tic-Tac box. These objects would be used to fixate and occupy those who, when bored, would turn to bullying and the penalisation of non-conformity. Doing nothing for neurotypical people is exactly that, totally role based automaton behaviour. For me and I’m guessing others who have autism, we fly manually, every tiny miniscule movement, postural change or facial expression is managed and conscious. What to do and when, is totally bewildering, which is why throughout my childhood, despite heavy camouflaging, friends would often observe me with my arm or leg, frozen in a former position, while I moved on to some other topic or posture. I got in trouble, because I couldn’t be in a social situation especially in a room, for long. I always tried to be outside, the fewer people the better. During my delinquent years, I had stopped to chat with a school friend, who I bumped in to whilst being chased by the police. We were mid conversation and he started staring at my arm and said, what the heck, put your arm down. My arm was pointing to where the police were, but the conversation had moved on, but my brain hadn’t attended in order to reset my arm’s position. At school I thought that I was getting on well at some gymnastics and talking normally and without surprises with the teacher. He told me to jump an obstacle, but I look at it and perfectly logically I said it is too high and therefore I should not attempt it. She then got angry, for no known reason to me and said that I was getting too big for my boots. This totally confused me, as I looked down at my plimsoles and said, but I’m not wearing boots. She went berserk and I was sent to the headmaster’s office to be disciplined. It took me literally years to work out that she thought my factual response was misinterpreted as arrogance or defiance. You can camoflage most situation. I developed the class clown response for most of my school years. Getting suspended for destroying a teachers command of a class, because they were all rolling around laughing, was much more desirable than counting the seconds, whilst trying to pretend to be normal and then getting your head stamped on by 5 guys. The part that I still struggle with is uncontrolled clumsiness, bumping in to things, dropping things, unsteadiness of gait and generally looking odd on account of a manual posture.

    Most normal people role play in every aspect of their lives, even psychologists and psychiatrists. Most of their mental existence is automatic role play or normative repetition. When you fly manually, there are a huge amount of things that people take for granted, that look totally unnatural when you are trying to reproduce them from past observation, such as masculinity. The problem that creates for autistic males especially, is that just the absence of masculinity, when you abstain from role play behaviour/posture, is almost identical to the presence of femininity, campness or perceived weakness. When women refrain from role play, you do not notice it as much, because females are by nature cultural passive, reactive and expected to be innactive. Hence the diagnostic anomaly, an absence of roles in men is implied to be an indicator of the contrary behavioural state, femininity. The same absence in women is ignored, because it is analagous to their normal cultural mode of engagement.

    If you want to really get in to camoflaging, go to Cambridge University. During my whole life, my time there was filled with meeting a huge amount of people who I recognized as fello ‘blaggers’ or people who are camouflaging. I could spot them hundreds of metres away, just from their unnatural posture and constant close watching of other people’s body movements. The unnatural broken face smile, caused by too close manual control of their facial expressions, the keys, newspaper or other prop objects in their hands and constant checking of their clothing and posture, gave them away. Someone once spotted me in a photograph of thousands of people, taken from about 500 metres away. I was amazed at their apparently military skill in spotting a person, (who I desperately hoped that they saw as normal). Turns out that my posture was so unique and recognizable, that it was easy to them, but a mystery to me.

    You tend, after many years of camoflaging, to give yourself the luxury of believing that maybe people see you as normal. Then inevitably, we have this kind warm illusion shattered. Someone at work, who I’ve worked with for about 5 years, got talking with me about behaviour. I said something about my shyness and they replied, is that why you are “like you are”? Illusion and heart shattered. I’ve had several of these ‘setbacks’ which remind you that you never will have the ability to just fit in, despite feeling that you are doing everything according to the manual.

    Should adults get a diagnosis, I would like to think that in the ideal situation, yes, it would help with having a prop, which helps explain ourselves to ourselves and others if necessary. My GP is from India and he has little warmth for Psychological issues or what he sees as unnecessary costly diagnoses. His favourite term is ‘not on the NHS’ and he is rewarded financially for non-referrals, so what chance have I got? I suffer from chronic Social Anxiety, have previously lost 7 years locked in my bedroom, am single at 45 and have a horrific experience just negotiating things like walking past people and having conversations that exceed my 60 second limit, where my face starts to get so tense that I twitch and pull all kinds of funny faces. It doesn’t help that I have a visible artery on my lower lip, which causes people to bite and scratch theirs in an act of mirroring. However good things get mentally, the physical anchor of the lip artery, pulls back the social anxiety and high self monitoring and amplifies the autistic mal-adjustment. Again my GP says, it is purely cosmetic, ‘Not on the NHS’. I leave the office crushed and back to square 1.

    So sometimes, despite extensive experience of covering up your autistic traits, you can’t get a diagnosis, because of an unwilling GP and you can’t move forward. I’ve spent 7 years working in a supermarket despite my degree, but even that is almost unbearable some days, if I have a bad face day or bad posture day, or people are particularly nasty or I happen to have someone who spends too long fixed in up close conversation, then my nervous system/facial muscles gets worn out and I lose control of my face through camoflaging fatique. This is why, people with autism in later life, often make sure that conversations are quick, transient, never dwelling and always, passing comments, with little or brief eye contact. As long as I’m always moving and never get caught, I can pretend to be a worthwhile person who people won’t attack.

    1. Thank you, Nick, for sharing your story and experiences – you speak so honestly and eloquently about what compensation feels like to you. I am the first author on the paper that has been described in the article above. We are really keen to hear from people about their experiences, such as the ones you have described. We feel this will be one of the most informative ways to understand how these compensatory strategies work for different people. I will leave the webpage to our online study here, just in case you (or anyone else who is reading this) are interested in taking part: All the best.

      1. Thanks so much Lucy, all filled in and completed. I very much appreciate the chance to discuss and voice these issues.

    2. Hi Nick,
      Just to echo Lucy, thank you for sharing your experiences and providing a window into your world.

    3. Nick, your GP is incompetent and you really should get a new one. I would find a local
      facebook group and ask for a recommendation of GPs who are good with adults with autism. But
      failing that any decent GP will refer you. (In your situation I might actually make a formal
      complaint about yours.)

      I was diagnosed last year at 47. I’m very glad I had it done and it has been helpful in ways I
      couldn’t have anticipated. My GP had no objections at all to making the referral even though
      everyone I’ve told has been surprised I’m autistic. I did have to wait about a year to be
      assessed. I was impressed by the range of services on offer to adults in my area and, athough
      most of the services were not for me, some were, and I could see the others would be useful
      for other people. I was also impressed by the understanding and accommodation of the staff,
      who would for example ask if the room was too bright and otherwise go out of their way. They
      really seemed to have a good understanding of the many difficulties people with autism can
      face and how serious they can be – unlike your GP.

      There seems to be an increasing awareness of adult autism and diagnosis later in life. You’ve
      got nothing lose any maybe a lot to gain from pursuing a diagnosis.

      Lastly, being autistic doesn’t mean you’re not a worthwhile person. Some of us don’t like too
      much eye contact, or loud noises, or whatever. That’s just the way we are and not something we
      should apologise for. The people who should apologies are those who treat autistics badly.
      Spending just a little time around other autistics, and the NHS staff, for whom autistic
      traits are just normal and unremarkable, helped me to change not just the way I think about my
      autistic features but how I feel about them and myself. Now I don’t beat myself up so much.
      It’s just the way I am.

      1. Thanks so much Tim, you’re a very kind and understanding person. I sort of know that he’s incompetent, because he treated my mother and father. Despite months of complaints about pain in his arm and a lung breath test, he died a week later from apparently chronic COPD, not a mention of which had ever been said. A year earlier, he allowed my mother, who had breast cancer, to miss appointments and stop taking her medication. We had suspected post-natal Psychosis for years. Despite a history of mental health issues and totally denying that she had cancer, the GP just left her to her own devices. If that was anyone paying attention, he should of at least sent her for a MH review, to ensure that he was meeting his duty of care. We joke that he killed both my parents, but in all seriousness, I sometimes wonder if he is qualified to do the job he’s doing. My GP diagnosed me with chronic Social anxiety, but only after I told him that I was suffering from it. He replied ‘ Oh you’ve definitely got it’, so why on earth had he never mentioned it before. I believe it’s the non-referral incentive scheme they have, so they are effectively paid to ignore evident illnesses. I have asked before to transfer to another GP within the practice, but they refused and said that I would have to leave the surgery for another one entirely. I feel like I couldn’t even raise the subject of an autism diagnosis, without him dismissing what I say and stating ‘Not on the NHS’.

      2. I’m really sorry to hear about your parents Nick. That’s awful. I have my own complaints about various GPs but nothing like that. I’ve seen articles about how some shocking percent of GPs are incompetent, but I forget the figure. Unfortunately it seems for many conditions you often have to diagnose yourself and worse maybe fight to get an official diagnosis.

        Could you change to a new surgery? When I had to find a new one the “find local services” part of this website was useful:

        But a recommendation of an autism-friendly GP would be even better.

        Have you ever tried the Alexander technique? I went to sessions on and off for a couple of years and I found it helpful for posture and movement. I also found it was an unexpectedly good way to relax. It’s slow-paced and contemplative, but engaging enough to keep my mind from wandering. It has a philosophy of being aware of and doing what’s right for you at the moment, and the talk was all about the ongoing movement activities rather than small talk.

        Thanks for your kind words and good luck.

  2. This is called ‘learning.’ All children learn by imitating. The learning is more complicated if you are of a minority brain type. It is very similar to being of a minority culture and trying to learn how to play be the same rules as the dominant culture. People of different culture are not compensating, they are learning to live in a world that was arranged by and for people of a different culture, which can be very confusing.

  3. There needs to be more thorough diagnosis by elimination: checking motor skills; sound processing and visual processing and fine-tuning as much as possible. Once that is done messages go more efficiently from eye to brain for example and hence bumping into tables etc stops.

  4. My son has Asperger’s, diagnosed at 19 after crashing out of uni with depression. He is an excellent compensator and camouflager, but has always found social situations stressful and exhausting, partly because he is also an introvert, but also really needs social contact. He would not be happy living on his own in the forest. But he has really enjoyed living abroad in a different culture, 9 weeks in Spain on an exchange at age 13 and another exchange in China later on. I’ve always felt he finds it easier when he doesn’t have to fit in, as he is always in the position of observing from outside a culture anyway. He has now learnt to accept himself more (now age 24) and has a happy small group of friends who interact online and has started an apprenticeship in a career which I think will really suit him. He had to go through years of rejections from interviews to get there – it just needed someone to give him the chance and not judge on initial awkwardness.

    1. That’s really good to hear that he’s got an apprenticeship, the most important thing for someone with high functioning autism is to earn a living, so that you’ve got a roof over your head, when your parents aren’t there to support you. Many people end up in poverty, because they don’t have the social skills to hold a job down. I’ve said it before, you can get away with almost all disabilities, apart from social weirdness. People of all classes and intelligence levels, feel it is totally fine to alienate, label and reject someone, as long as they can put the Weird label on you. They’re not interested in looking deeper, they just want you categorised and dealt with psychologically. I wish you and your son the best in the future.

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