There’s such a thing as “autism camouflaging” and it might explain why some people are diagnosed so late

By guest blogger Helge Hasselmann

While autism is usually diagnosed in childhood, some people remain “off the radar” for a long time and only receive a diagnosis much later. One possible reason is that they have learned socially appropriate behaviours, effectively camouflaging their social difficulties, including maintaining eye contact during conversations, memorising jokes or imitating facial expressions.

This pattern of behaviour could have serious consequences for the lives of some people with autism. It is easy to imagine that camouflaging demands significant cognitive effort, leading to mental exhaustion over time, and in extreme cases perhaps also contributing to anxiety and depression.

If there are gender differences in camouflaging, this could also help explain the well-known male preponderance in autism spectrum disorders. At least part of the gender imbalance may, in fact, stem from an under-diagnosis of autism in girls because they are better at “masking” symptoms.

Before now, autism camouflaging has not been studied in a systematic and standardised manner: a recent open-access study in the journal Autism, by Meng-Chuan Lai and his colleagues, is the first to offer an operationalisation of camouflaging, which they define as the discrepancy between internal and external states in social-interpersonal contexts. For instance, if an autistic person maintains eye contact during a conversation because they have learnt that this is socially appropriate, even though this clashes with how they really want to behave, this would be an example of camouflaging.

Lai and his colleagues used clinical instruments that are well established in autism research to measure the contrast between internal and external signs of autism among 30 women and 30 men with an established diagnosis of autism. Both gender groups were matched on age (average age: males 27.2 years and females 27.8 years) and intelligence and were free from intellectual disability.

The researchers used the Autism Diagnostic Observation Schedule (ADOS), which includes several tasks requiring social interaction with an experimenter, to measure overt behaviour (external state). And they used the Autism Spectrum Quotient (ASQ; a questionnaire assessing autistic traits) and the “Reading the Mind in the Eyes” test (a computerised task that measures social cognitive ability, e.g. inferring how people feel based on their facial expression) to provide information about internal states. Relatively low scores on the ADOS (i.e. few signs of autism), combined with poor performance on the ASQ and the Reading the Mind in The Eyes, was taken as a sign of camouflaging.

Because camouflaging likely comes at considerable cognitive and emotional costs, the researchers also studied their participants’ levels of anxiety and depression, as well as their executive function. Finally, they also used magnetic resonance imaging to scan the structure of their participants’ brains.

As the researchers expected, women with autism had significantly higher camouflaging scores than their male counterparts, although there was considerable variability in both groups. Across the whole sample, higher camouflaging scores were associated with higher levels of depression, but not anxiety. When looking at gender differences, the association between camouflaging and depression remained significant only in the men (so it could be speculated that men are more susceptible to the negative consequences of camouflaging). Conversely, verbal intelligence was not associated with camouflaging in either the whole sample or genders separately. Interestingly, camouflaging correlated with executive function in females, but not males. This indicated that women who camouflaged more tended to have better executive function.

The extent to which individuals with autism engaged in camouflaging was not related to their age. This indicates that camouflaging may not necessarily increase with greater learning experience, as might be expected with older age.

Neuroanatomical findings differed between sexes, with links between brain structure and camouflaging generally more pronounced in the women. For instance, higher camouflaging was associated with smaller volume in temporal, cerebellar and occipital brain regions in women, but not in men. While there is no easy explanation for this sex difference, it could be speculated that the involved brain areas have a different function in camouflaging for women compared with men. These brain regions are associated with emotional processing, so perhaps they are involved in an emotional component of camouflaging that is more relevant to women. However, this needs to be rigorously examined in future studies.

This study is the first to offer systematic, methodologically sound evidence in support of higher camouflaging in women than men with autism. As such, these results support reports from parents or clinicians that hint at better social skills in girls with autism as compared with boys. However, as the study found evidence of men who engaged in camouflaging and women who did not, camouflaging is unlikely to constitute a uniquely female presentation of autism.

There are several points that limit the scope of this study. First, the sample size was modest and only included individuals with an established diagnosis of autism who were free from intellectual disability. To study the “real world” implications of camouflaging, it would have been interesting to study people with sub-threshold autistic scores because camouflaging might be one of the reasons why they have remained below diagnostic threshold in the first place. This information might also be relevant for healthcare professionals in terms of both diagnosis and treatment.

Finally, the operationalization of camouflaging may be vulnerable to subjective bias: For example, ADOS raters may be guided by implicit gender stereotypes, leading them to give inappropriately high autism scores to girls who behave in more “boyish” ways.

To conclude, this study provides the first systematic definition of camouflaging in individuals with autism and shows that this behaviour is more common in women than men. These clear-cut gender differences highlight the need to consider camouflaging in clinical contexts in the future.

Quantifying and exploring camouflaging in men and women with autism

img_20150110_163732Post written for BPS Research Digest by Helge Hasselmann. Helge studied psychology and clinical neurosciences. Since 2014, he is a PhD student in medical neurosciences at Charité University Hospital in Berlin, Germany, with a focus on understanding the role of the immune system in major depression.

59 thoughts on “There’s such a thing as “autism camouflaging” and it might explain why some people are diagnosed so late”

  1. ‘girls … are better at “masking” symptoms.’ Or maybe the pressure on girls to be socially competent is greater than the pressure on boys, so we put in the effort rather than be ostracised. I was a weird, socially awkward kid who got obsessed with fire hydrants who’s now trying to get an autism diagnosis as an adult. People tell me I’m too ‘normal’ to be autistic – but, as the article suggests, the cognitive effort involved in masking my difficulties is exhausting.
    The first question in my assessment by MH Nurse was ‘what makes you think you’re autistic?’ Umm, you want me to have an awareness of how neurotypicals respond to the world, and compare it to my personal responses, and explain the differences to you? Any idea how impossible that is? Currently waiting to get an appointment with a psychiatrist. Wonder how much of his medical training covered autism in adult females?
    Great blog post, anyway. Many thanks to all those doing the research

    1. Or maybe girls aren’t rejected with the utter contempt that boys experience at a young age. Women are more allowed to be different, at least in American culture, whereas men are expected to act in a very specific fashion.

      1. oh i see, you’re an incel. that explains your ignorant comments about autism. if you think it’s socially acceptable for women to be awkward and unsociable, you are an idiot who knows no women.

  2. Yes this makes clinical sense. Some men I see do camouflage, but the ASD women tend to be better at it . All the same others find these ASD women odd interpersonally and that the smiles and simulated social graces do not feel genuine quite ‘fit with the occasion ‘a lot of the time. They still misunderstand social cues, and I often find they are puzzled at the reactions of others. It must be exhausting to try and fit in.

    Clinical psychologist

    1. It is. So I quit. I just try to be polite now. That and honesty are the important things. Still exhausting. Maybe its the way people always ask if I noticed the look on /her/ face. Yeah but no… @__@;

    2. I’m not that expressive. Maybe that’s one of the cons of “passing”. Autistic people tend to have abnormal facial expressions when they express emotions. To look normal, we have to “pass”. In articles about aspie husbands, it mentioned about the lack of emotional connections. Maybe the pressure to act normal played a role. If they become expressive, the problem is that they might be perceived as immature. They might not express emotions even when they’re happy. I’m thinking that it’s probably better not to “pass” when expressing emotions is needed. We should have autism acceptance.

  3. I’m willing to volunteer for future, more extensive studies, should they be funded. I’m still trying to get an official diagnosis at 35 and my experiences trying have been plagued by medical personnel with superiority complexes who seem to think that either there’s no possible way I could have functioned for this long without a diagnosis or that I’d I’ve gone this long I should just keep “dealing with it” the way I have been all my life. Which would be great if masking/camouflage didn’t lead to complete emotional breakdown on a fairly regular basis. It’s exhausting trying to live up to someone else’s expectation of normal when you’re literally incapable of it.

    1. Good luck to you. I hope you are successful. It is, as you know possible to go that long without being noticed… I had no idea that I was autistic until I read an article about women on the spectrum and realized that was my experience. Officially diagnosed at 44.

  4. I know I’m autistic, not diagnosed but I camouflage And have done since primary school and bullying by teachers. It’s hard but I work in a field with many Neuro diverse people so being “odd” is acceptable more than in the wider world.

  5. Curious about not just gender differences with respect to camouflaging, but also potential sexual preference differences in future studies.

  6. And this is how I ended up in a relationship with an autistic man, and needed a long time to figure out what was going on.

    Please, someone needs to do some research on how to help people who end up married to autistic people who were masking in the early stages (sometimes years) of a relationship. The autistic person isn’t the only one who ends up exhausted and depressed.

    1. I agree Kris,more research is needed in this area to offer support for family members affected. Feeling lonely and isolated becomes routine amongst the rest of the routines.

    2. Thank you Kris. 32 years with a brilliant man. But his retirement has struck the proverbial last straw to break this camel’s back. I feel like I’m living with a 9 year old who just doesn’t understand anything. I started counseling because he wouldn’t. But I have been physically suffering from “seeing” clearly what the problem is, but unable to “help ” . Help. Strategies needed.

    3. I’m sure camouflaging is much more common than professional health carers realise, as they only see the people who have come for help. Completely agree with Kris that a lot more needs to be done for the partners of those with AS, who have masked it, and often continue to do so. It’s the partners who are often taking on the burden of care and being made to feel responsible for the difficulties the undiagnosed autistic people experience.

      1. Thank you for bringing this point up – now I don’t feel so alone. My husband self-diagnosed himself with autism a couple of years back though I wonder if he uses this as an excuse to behave the say he does. At this very moment my ‘autistic’ husband is sitting at his computer like he does most evenings. This is our married life. In the early years of our relationship I was studying away and I hadn’t fully realised how life would be as a married couple. He appeared to take interest in what I was interested in and vice versa but I now recognise he was making himself acceptable to me as we have little in common now. Our kids are getting that bit older (9 and 7) I’m concerned they are copying his behaviour as this is what they see modelled by him and is the easy option, eg, excessive demanding to go on electronic gadgets, ignoring me when I speak to them, forgetting things when going to school when he takes them when I know that they would have remembered if I was with them. Even more worrying is the different parenting styles and he just can’t see the negative impact of his style is having/will have. I feel as if I come across as the demon mother having to constantly remind the children of the house rules as he lets everything slip (which I know sounds contradictory as routines and order are typical traits of autism) and would rather bury his head than deal with any conflict. The kids aren’t aware that it is I who tries to create a stimulating life for them otherwise all their time would be spent on electronic gadgets/watching TV. Don’t get me wrong – l’m not perfect but I’ve seen the strains of autism can have on the family with having been a teacher and now an ed psych. My mother would often say, ‘You don’t know someone until you live with them’ – this is so true.

      2. What a brave comment Mary,thank you. I feel that you have managed to say what I feel.I wonder though what kind of support can partners of people who camouflage symptoms get. At least in my case, he manages to keep masking symptoms for the rest of the world only.Perhaps he feels comfortable at home.My husband has learned so well what he needs to say ,how to listen to acquire information not understand, even sarcasm has been fully mastered.All to the point of understanding how his action hurt others or that feelings need validating and others are allowed and entitled to their own opinion. My children and 8 and 10 and I am studying psychology.Part of the reason why I started was to understand the cold shoulder I get so constantly and to learn how to prevent my children from hurting as much as I do. Once autism was evident he admitted to it but not to the problems it causes for those around.I can see why from a ToM point of view but I still feel lost and lonely.My son has high functioning autism,he has been diagnosed when he was 3 but he is so advanced in terms of academics most people deny there is any worry there.
        I want to learn how to cope and understand situations,perhaps partners of undiagnosed ASD could support each other.

    4. Kris Hughes, you are not alone. My husband masked so well that it took years for me to figure out what is up with him. I seriously had to diagnose him myself. There’s obviously something off about his interface, that’s a given. However, it wasn’t until we were sitting in a restaurant and he just hopped up and walked out because the noise was getting to him, then became embarrassed at his own behavior, and then became hostile, that I realized I may have a serious problem on my hands. And it IS a problem. He honestly doesn’t have a clue about how narcissistic he is or how he is incapable of connecting on a meaningful level with anyone. His behavior is an odd mix of entitlement, hostility, aggression, and paranoia. It’s all the yucky stuff and it’s all housed in a six foot frame. I just don’t know.

      1. are you qualified to make such a diagnosis? because it sounds like you don’t actually understand what autism is and aren’t qualified to recognise it in others.

    5. While I appreciate your situation, it’s important that we realize these individuals are forced to pretend to be someone they aren’t. You are the one with the decision in this situation- not them. To be extremely blunt, no one is forcing you to stay. I don’t have a whole lot of sympathy because I’ve seen how most NT’s behave the second that the mask slips…. and we’re supposed to be the ones lacking empathy.

  7. Unfortunately very cisnormative especially considering the higher proportional occurrence of being trans or gender nonconforming among those who are autistic vs those who are not autistic.

  8. Not only was there ‘masking’, and I got quite good at it, but, when I was a child in the 1970s, there was hardly such a thing as “autism”, and very very few people had even heard of the word. Thus, I was diagnosed at 46 (just 3 years ago)…and, only because I had watched a television program that featured an autistic boy….and, I recognized the similarities from when I was a kid….did I even begin to suspect it.

  9. I still haven’t been able to get a diagnosis, after seeing two psychologists, but I have taken multiple tests and am definitely on the spectrum. I only began to realize WHY I was always different and on the edge of my social groups, never quite “getting it” when my daughter was (thankfully) dx’d with Aspergers as well. It all started to make sense and all the odd little pieces of my childhood and life snapped together and I could finally see a whole picture which was no longer such a mystery to me. I am now much more able to accept my differences and dont spend quite as much time masking. I just enjoy my differentness and live my life and am a better advocate for my daughter.

    1. Oh, and the second psychologist said to me “well, we are all “a little autistic, arent we?” This is when I quit seeking a diagnosis and decided to just enjoy life as it is.

  10. Thank you for your article. I am part of a team of researchers at University College London and we are currently collecting data for a study on the relationship between social camouflaging and physical and psychological well-being in adults with autism. I would like to share the link to the online survey we are using to collect data for anyone who is willing and eligible to take part, or if you know of any relevant communities to share it with. To take part, participants must be 18 years of age or older and have received a diagnosis of an Autism Spectrum Condition from a clinician (including autism, autism spectrum disorder, Asperger’s syndrome, autistic disorder, high-functioning autism or Pervasive Developmental Disorder). Please follow the link for further details on the study. Thank you.

  11. I honestly haven’t a clue if I’m on the spectrum, or simply very misanthropic, but some friends who work with people who are tell me that I may be. I’m 43 and disabled with ME, so I’m not really sure what good a diagnosis would do me at this point anyhow, lol.

  12. I’d also be interested in the effects of a parent with autism on the children. I strongly suspect my mum having autism, but she’s never been diagnosed because her mum drilled camouflaging tricks into her that much, I believe. I haven’t had a bad childhood, but there were many odd things going on or things missing. I also feel I’ve figured out a lot of social expectations a lot later in my life, because they were not expected at home. I’m not sure if there’s a line of research on this topic?

  13. Pingback: Masked Smile 🎭
  14. This whole apologia for late diagnosing of autism is not only preposterous but also dangerous. I know of no other serious disability where sufferers are able to fake normal for years. I also have not seen any research supporting such conjecture. This whole effort goes to the attempt to soft-peddle autism as some sort of high level disability that somehow is within the realm of normal. It’s a nice slight of hand. Get classified as disabled for all the entitlements, while politically insisting that autism is merely a variation of normal, not less. This soft-peddling of autism is a great disservice to the autistic, who are indeed disabled and are unlikely to fake it otherwise. The public is mislead into thinking that people with autism are clever actors. The truth is that the diagnosticians and their agent teachers, primary care providers and social workers are incompetent. Autism is not subtle. It is a train wreck.

    1. Seems like you’re trying to mislead the public that autism isn’t a spectrum and that it’s not possible to be autistic and have a normal life.

    2. One problem knowledge about Autism is fairly recent and knowledge about it is far from complete. People fake it to make it all the time. Some call it “acting professional” . For the milder autism many consider not “real autism” it is a 24/7 effort that is harder on a constant basis. Autistics like everyone else can learn stuff like eye contact and that small talk is important. When people are constantly telling you, you suck at these things and your traits are wrong many will get the message. There are many books instructing people how to do these things. By the time some autistics are well into adulthood they can pass as semi normal. Even when this is reasonably well done this act can not last forever. The constant effort often leads to what is called mid life crises or burnout earlier and more intensely. I read about this on Autism forums constantly. Another factor to consider is just because somebody says or thinks they are passing well does not mean they are. If you are poor at reading others you are particularly vulnerable to this denial.

      I agree with you that media depictions are often not helpful. Either the autistic is a cute, funny socially awkward genius or a not fully human horrific burden

    3. Many people who were diagnosed late, like me, were diagnosed late because in the meantime we were misdiagnosed with various mental illnesses, not because we were passing as normal. No one ever thought I was normal, they just didn’t know that what was wrong with me was autism because when I was younger people didn’t think girls could be autistic. Now we know better.

  15. I know I have aspergers but no formal diagnosis. I’m 50 and as a child had selective mutism, social anxiety, took things too literally , OCD and I see most of this in my 9 yr old son. It breaks my heart because I know what he goes thru every day. I am very good at imitating people so I got by but kids are so cruel now. How do I help him?

  16. Seems like a good camouflage can fool this method, too. One can train themselves to recognize facial expressions so they can spoof the ADOS and the computerized test. The only solution might be to ask someone and listen to what they say.

  17. It’s not just a gender thing to mask.My son has managed more than my daughter.It should be recognised as some do.Too focused on girls we are missing boys that are masking

  18. An old school acquaintance was diagnosed at near 50 years having ‘rebooted’ once every 5 years or so having lost everything to exploiters and haters regularly until they were too old to start again. This person carefully modified their behaviour at every reset despite the lack of any knowledge of the later ASD diagnosis and their subliminal behavioural ‘problems’. A late diagnosis need a lot of help to eradicate the accumulated knowledge that one is sufficiently different to be treated as an outcast. I know that the person in question was beaten-up more than once a day at their primary school and was forced to fight for the entertainment of others. When this individual left the school each evening they were set upon by three others and kicked almost senseless. The school regarded it as not their business; the beatings being all of twenty metres out of the school gate. The hate has recurred throughout the persons life in different forms and even the police and other ‘authorities’ have a peculiar dislike of them. I can see the dislike but I can’t explain it. The person is just difficult to warm to; it is a subliminal feeling that they don’t belong no matter how they act. They are often excluded even in adulthood and their social activity groups reorganise smaller, closed groups to head-off their attending that group’s collective socials events.

    In explaining their experiences to me – many years on – it is apparent that even a high-functioning individual who, without realising that they are Autistic but knowing that they are different had not sufficient insight to change as necessary over a term of 60 years. The NHS and local authorities do not diagnose for fear of needing to fund services and austerity seems to have blunted the intended effects of the ‘Autism Act’ ratified in 2010.

  19. I’m in my seventies now, and I suspect that I’m a camouflage autist. Back in the early fifties, it was thought by my school teachers that I had a hearing problem. An audiology test found no hearing deficit, but I remember that my mother continued to believe that I couldn’t hear properly. I suspect that she didn’t want to admit that I had psychological problems, to avoid feelings of guilt.

    I’ve now reached an age where I find the effort involved in socializing is no longer worthwhile. My realization of that is a relief. I separated from my (long-suffering) wife a couple of years ago. That’s also a relief. And I’m now getting serious about getting back into cycle racing.

  20. So the roommate I live with might not have Narcissistic Personality Disorder and just flew under the “Autism Spectrum Disorder” radar and was never diagnosed. I mean, reading about sociopaths, psychopaths, those with Asperger’s, Narcissistic Personality Disorder or other anti-social disorders, could all be Autism Spectrum Disorders instead of Psychopathy Spectrum Disorders?? Where exactly is the line that separates the two? Or are they both one and the same??

    1. Narcissist and psycopaths are aware of others feelings and intentionally manipulate them for thier selfish reasons. Autistics are impaired with non verbal language and are much more likely to be the victim of a manipulator then the one doing the munipulation. Autistics do lie are but are likely to be caught at it.

      Autistics are often “in thier own world” as a reaction to sensory overload and or repeated failures with socializing and thus appear narcissistic. They might talk on and on about a topic they are interested in but because of “theory of mind” impairments, fail to understand the other person is not like them. They may not pick up on the other persons body language communicating bordom. Thier own body language may be atypical, they may appear uninterested when in fact they are very interested in the discussion. Eye contact is often uncomfortable to painfull for those on the spectrum. Lack of eye contact is oftem misinterpreted as lack of interest or decietfullness.

    2. you are so woefully uninformed about both antisocial personality disorder (“psychopath spectrum disoder” isn’t a thing), NPD, and autism. You say you’ve been reading but I don’t think you understood anything you read on these subjects. People with antisocial personality disorder are neurologically more like photo-negatives of autistic people, we are practically opposites.

    3. Line? There isn’t one. All of psychology is actually based on the unemapthetic nature of NT’s as some kind of assumed “normal”. It’s equivalent to guessing at the source code from the output. You really can’t with any accuracy. You’ve made a connection that eludes most people. I think you’re quite right about the cluster B’s and autism.

      1. you are obviously ignorant about psychiatric disorders and neurology if you think cluster b personality disorders and autism (which is a neurodevelopmental disorder, not a psychiatric illness) are the same.

  21. I disagree with the premise that the crux of the issue in late diagnosis for female people is that we are doing something that just makes it too darn confusing to see us for who we are.

    I think it’s two other things:

    The first and primary cause of our late diagnoses is that the world pays far less attention to what women have to say and what we think and how we process info than it does to these facets of male being.

    Particularly when we are young and perceived as pretty, this is true.

    When the pretty goes, it becomes a little easier to see the quality of our minds and struggles.

    Sexism is so pervasive I think our internal experience is not seen.

    When girls are young, fertile and pretty, therapists are looking for cutting, depression, anxiety, eating disorders, god knows what.

    As I look back on it, somebody should have noticed that I could feel a musical note in my body and dissolve into tears, couldn’t tolerate noise or my socks being wrong. I was a sensory mess and still am.

    But we didn’t consider those things autism.

    I spoke and that negated an autism dx 30 and 40 and 50 years ago.

    Later, when my then 30 year old contemporaries who were men were getting aspie diagnosis, I think in the main nobody’d heard I word I’d said in decades.

    The women I know who were diagnosed in the 70s and 80s were undeniable. They didn’t speak and painted elaborate colorscapes or had some other fancy talent.

    I don’t have elaborate shielding and camo. What nonsense. I wish to Hell I did. But the fact is, when I was young people saw my outsides. And now that I’m pushing 50 it’s suddenly apparent when a weirdo I am.

    Particularly in the 70s and 80s people couldn’t see female people as humans. The fact is, there was a lot of demanding that socially awkward girls try harder. I don’t believe most of us were good at trying harder. I for one hid behind socially adept friends. And some of us couldn’t even do that. None of it mattered because nobody cared who we were. If we were pretty, that was the price of admission. If we were nit pretty, the cost was exclusion. What a luxury for anyone to give a hoot who we actually were.

    I think it’s nuts to claim we are doing something fancy to hide who we are, versus that the therapeutic community didn’t see us out in plain sight.

    1. I agree that we could be looking for the wrong things. If the person has intellectual disability or other obvious symptoms such as clumsiness, it’s more likely that they’ll get help. Executive dysfunction may be harder to tell because it can be masked by intact rote memory or normal abilities in simple tasks.

      Camouflaging might also cause it to be relabelled. Children who “outgrew” autism had their autism replaced with compulsions, anxiety, and ADHD symptoms based on studies. That makes sense because autism is so real that we can only hide so much of it.

      Do you think it’s possible that we’re also trained to camouflage until it becomes a habit? Once it becomes a habit, it doesn’t feel like it’s camouflaging. I expect more of non-autistic ways of expressing emotions when camouflaging isn’t used. Autistic people’s facial expressions are often exaggerated and look abnormal.

      I’ve been expressive before but because of concerns of being awkward, I waited for my emotions to dissipate so that I can look non-autistic. In other words, faked facial expressions. When I smile spontaneously, sometimes people giggle. It’s probably rare for others to giggle when non-autistic people greet with a smile.

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