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.

31 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

    Like

  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

    Like

    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… @__@;

      Like

  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.

    Like

  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.

    Like

  5. 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.

    Like

    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.

      Like

    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.

      Like

    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.

      Like

      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.

        Like

      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.

        Like

    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.

      Like

  6. 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.

    Like

  7. 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.

    Like

    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.

      Like

  8. 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.

    https://uclpsych.eu.qualtrics.com/SE/?SID=SV_3O7aRsEvVeooytT

    Like

  9. 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.

    Like

  10. 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?

    Like

  11. Pingback: Masked Smile 🎭
  12. 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.

    Like

    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.

      Like

  13. 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?

    Like

  14. 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.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s