Today I want to take a paper about social camouflaging and discuss it a bit. Social camouflaging is the act of trying to hide a part of yourself so that you can fit into society better. It is something that is used by a lot of different groups of people throughout society (essentially think of most minorities and in some way there is some camouflaging that can take place to help them to fit in with the majority).
If you are autistic, you probably know exactly what this feels like. As autism is considered a ‘disorder of socialisation’ in some, this in itself puts a huge pressure on autistic people to fit in. It creates a feeling that either you mask it so no one can tell you are autistic, or they think that you are weird and isolate you. However, in masking it you end up creating a degree of isolation and separation anyway, so ultimately you end up in a problematic situation.
The neurodiversity movement is pushing for everyone to be accepted for who they are and to see the value of having people who are different from the norm, which is really super. However, as society currently is, there is still that deep seated feeling that you need to conform to what society deems normal if you want to be a part of that society (ex. keeping a job, having friends, finding a partner).
I read an interesting blog article a while back from ‘Musingsofanaspie’ on the myth of passing, which I found fascinating to think about. We put a lot of effort into ‘passing’ and social camouflage. However, personally, I can look at people across the street and figure out if they are autistic. It’s a sense that’s come from meeting a lot of autistic people over time and growing up with a family who are autistic. There are little things in the way someone moves that tells you that they don’t like certain sensory things doing on. You can tell by how aware or unaware they are of their environment. You can tell by some quite subtle things that I can’t even say because it becomes so engrained in that it is basically instinct. We can pass for neurotypical people with no experience of autism, but when it comes to people with experience in some way then actually people can tell.
These are the people where you’d hope it wouldn’t matter if they could tell. However, if other people can tell then we can’t actually be all that good at passing? And if that is the case then why put so much effort into it?
We are going to look at an article by Hull, et al. titled ““Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions”. This is a piece of qualitative research, and so I’m going to analyse it a little differently to previous quantitative studies that I have put up. For this I’m going to use a CASP framework to give a bit of information about what is going on, and then we can bring that together to talk about what we learn from it.
Section A: Are the results valid?
Was there a clear statement of the aims of the research? – Yes. The research is aiming to answer the following questions:
1) What is camouflaging?
2) What are the techniques used and what do people with ASC think camouflaging is?
3) Why do people camouflage their ASC?
4) What are the consequences of camouflaging?
They explain in their introduction that they believe that camouflaging in ASC may be different from camouflaging in the neurotypical population, mostly in that it requires a lot more effort and challenge, that they associate with autistic people being less able to manage the way others perceive them in social situations due to the condition. Therefore, it is a unique area that requires investigating. They also discuss how camouflaging may be an explanation for missed or late diagnosis in females, a population that is significantly less likely to receive a diagnosis than males even if they have similar levels of traits.
They go on to discuss other gender differences in autism, providing an interesting idea that males with ASC are more likely to experience externalising difficulties (ex. Hyperactivity, conduct problems) while women are more likely to experience internalising problems (ex. Anxiety, depression). This is interesting to me and I can see how this may be correct. On a personal level I feel like I have met a fair few males who present more like women are meant to, and some women who present more like males are meant to. But there are always exceptions to generalisations so let’s just leave that one there. What this does provide is a good reason why some people are diagnosed late, particularly for women, as this internalising element means that a lot of the classic traits needed for a diagnosis of autism are not present (however, the symptoms are).
They discuss about how camouflaging may make others feel like the person is functioning well, while actually they can be struggling a lot. They talk about how, people who have to camouflage less generally have better mental health than those who have to camouflage more. When you add that with figures about health inequalities showing that rates of suicide are 3.5 times higher in ‘high functioning’ autistic people than in the general population, then this would make some sense and highlight the really terrifying burden of camouflaging.
Is a qualitative methodology appropriate? – Again, yes. This is something that is requiring you to look at people’s experiences and trying to develop our understanding of a phenomenon. This is an ideal thing to study using qualitative research. There are ways you could investigate this with quantitative methods (ex. numerical scales on surveys, mental health questionnaires). However, this isn’t what you should be doing with these research questions at this stage.
Therefore, I think there is validity in what they are looking for.
Is it worth continuing?
Was the research design appropriate to address the aims of the research? – For this we need to look at the research design. They take a group of 92 adults from 15 different nationalities (with 55% being British) who were over the age of 16 years and received a DSM-IV or DSM-V diagnosis of an autistic spectrum condition. They note that they weren’t always able to independently verify the diagnostic status of participants, adding a limitation to their study, but they tried what they could to do this. They found out about questioning through an online questionnaire and then analysed this.
This seems like a fair research design for what they are after. After they got the information they did six phases of thematic analysis and gained some results on seven themes and sixteen subthemes.
Was the recruitment strategy appropriate to the aims of the research? – Yes. They used the autism research centre in Cambridge’s database and people who responded to the opportunity. This is appropriate. There is something to be said around all of the study that people who have successfully camouflaged for a long time and thus never been diagnosed or feel like there is no effect on their life and so wouldn’t be involved in research may not be included. However, it may be difficult to reach people in this group to gain their perspective, so I can understand everything in that perspective. They also note this as a limitation and state that it may not represent all autistic people, which is good.
Was the data collected in a way that addressed the research issue? – Yes. Questionnaires are fair. Online questionnaires are efficient, and possibly better for autistic people as it gives them more time to consider their answers. There are chances for bias with the method, but I think that it is a fair method to use.
Has the relationship between researcher and participants been adequately considered? – This I can’t tell from what I’ve seen. The study has ethical approval, and informed consent was gathered at each stage. Seeing as though the researcher was generally away from the study itself (as it was a questionnaire) there is probably not much influence from this, but there is nothing I can see to say that this was considered.
Overall, I feel like the study is worth continuing from this and had a good methodology for what they were wanting to look at.
What are the results?
Let’s talk about the fun bit – what did they find. They ended up having seven themes that falls under their main questions: what is camouflaging? (‘Masking’ and ‘compensation’); motivations for camouflaging (‘to know and be known’ and ‘assimilation’); and consequences of camouflaging (‘I fall to pieces’, ‘I’m not my true self’, and ‘people have stereotyped views’). In these are sixteen subthemes.
They have a population of 55 females, 30 males and 7 non-binary people (Table 1). Interestingly, the response to these themes have a bit of variation between genders (thought it is difficult to compare with the non-binary group, for while there is a fair number of people in this group given that studies are often underrepresented by non-binary people, the numbers are still small and so one person not agreeing can considerable change the percentage). Males generally reported less of the problems – in particular regarding people having a stereotyped view. But generally everyone experienced these themes.
|
Theme |
|||
|
Female (n=55) |
Male (n=30) |
Non-Binary (n=7) |
|
|
Assimilation: “hide in plain sight” |
49 (89%) |
20 (67%) |
7 (100%) |
|
“To know and be known” |
42 (76%) |
24 (80%) |
5 (71%) |
|
Compensation: “to exceed what nature has given” |
45 (81%) |
22 (73%) |
7 (100%) |
|
Masking: “I’m hiding behind what I want people to see” |
38 (69%) |
18 (60%) |
7 (100%) |
|
“I fall to pieces” |
44 (80%) |
21 (70%) |
7 (100%) |
|
“People have a stereotyped view” |
32 (58%) |
6 (20%) |
4 (57%) |
|
“I’m not my true self” |
31 (56%) |
15 (50%) |
3 (42%) |
Table 1: Shows the number of participants referencing each theme, but with percentages to show relation between the different groups.
Taking their first question on what camouflaging is (they start with motivations for camouflaging in the results section, but I think that doesn’t make sense after their earlier aims, so I’m doing it my way XD – Also, something I have learnt while writing this is that I do not know how to spell camouflage). This was reported as compensation and masking. Compensation is the idea of having strategies to counteract the difficulties that you can have with socialisation. A lot of participants reported having strategies for specific situations to perform behaviours used in typical social encounters (including forcing and maintaining eye contact, effort to display facial expressions, small talk, asking questions of others). Overall, what this shows is that autistic people in the study felt like they were putting a lot of effort into the conversations they have. Masking is the idea that you develop a persona (go Arsene!) or character to use in a social situation so you can hide your ASC characteristics. Participants reported masking and minimising stimming behaviours (doing them in subtle ways if at all), presenting a different identity (to extreme elements in some cases) and mimicking the behaviour of others. Both of these ring true while reading some of the accounts of the participants.
Next we’ll look at motivations for camouflaging. They start by discussing assimilation. Participants who were female or non-binary primarily reported wanting to ‘blend in with the normals’ with this feeling that there is a social expectation from the general population that they needed to change in order to fit in. Overall the aim was to avoid the feeling of being uncomfortable and appearing different. An interesting view suggested is that everyone, including neurotypicals, are camouflaging at any time. I think that this is sort of true, though I’d argue that neurotypical people may not feel they have to do it to the same extremes and so don’t get a lot of the side effects that neurodiverse people may get. They study continues to say that people are always wanting to do it for pragmatic reasons (to get jobs or qualifications). Some people reported doing it for safety, to avoid being ostracised, verbally, emotionally or physically attacked.
The other motivation discussed was “I want to know and be known”. Camouflaging provides people with the opportunity to interact with others. A common theme with autism that I have seen is that some autistic people really want to be able to socialise with others, and are able to do it. However, it is exhausting due to the efforts they have to go through to fit in with the different view. This is reflected in this study. An interesting point from this is that some people felt that this camouflaging was only appropriate at the early stages of a relationship, and as they developed deeper bonds the need disappears and you can be more genuinely you.
Finally, they discuss the consequences. The most common response was in the category of ‘I fall to pieces’, which was their way of detailed exhaustion. Overall, whatever your method and motivation, camouflaging is exhausting (I’ve also started to learn how to spell camouflage now – yay!). Having to constantly think outside of yourself about what you need to do, having to constantly control yourself and the discomfort from doing all of this is exhausting: physically, mentally, and emotionally. Doing this can lead to a significant worsening in mental health, with people reporting extreme anxiety and stress through the hypervigilence that you need to develop. Camouflaging in autism is to an extent like trying to look left and right at the same time – it goes against the abilities that we have at our disposal. Instead of looking left and right at the same time, you are constantly darting between the two. It is not in our capability to get it right all the time. Interestingly, a small group of participants reported feeling satisfied or relieved after camouflaging. I can sort of understand this in certain situations, though I’d more feel relieved that I got it right or something bad didn’t happen, which is probably not quite the same thing.
Another consequence is that “people have a stereotype view”. That, because of camouflaging, people say the dreaded “Oh I never knew you were autistic” line that always leads to me doing a placating smile while feeling irritated. This allowed people to live their life, which people took as a positive. However, for some people it lead to a feeling that others questioned their diagnosis and whether they were #actuallyautistic. It also meant that people received less support for their autism and the expectation was that they would be fine in a situation. This is a quite self-defeating thing, as the more you show you are comfortable in a difficult situation, the more people think you will continue to be comfortable. This leads to a principle that I found really relevant for myself previously where you get to a certain level and stop being able to function as you should because you are beyond your capacity, yet other people don’t see it coming because you dealt well before then.
Finally, people reported that they were not being their true self and that affected their perception of their authenticity. A fair number of people I’ve met quite like their difference (their awesomeness) and so hiding it away is a real struggle. Some people in this study reported similarly. They also reported that they felt their relationships were built on deception because of this camouflaging, reinforcing a feeling of loneliness and isolation. Some people had it to such an extent that they felt like they were losing a sense of who they really are, which produced a lot of anxiety through a loss of grounding and security in their identity.
This is a lot of interesting information, but also information that makes sense if you have some experience of it. Reading this I found a few bits interesting to see, but a lot of it made sense from my own life and I imagine that if you are reading this and are autistic then you might have a similar experience.
Continuing our full analysis:
Have ethical issues been taken into consideration? – Yes. The study was approved by an ethics committee. They explain how they conducted the study and gave every opportunity for participants to withdraw from it.
Was the data analysis sufficiently rigorous? – Yes. They have explained the thematic analysis they used and how they did it.
Is there a clear statement of findings? – Yes – we’ve just discussed a lot of it and they state it clearly in the discussion section too.
Will the results help locally?
How valuable is the research – The research does add a good contribution of information into the subject that other people have not done as much work on. This is work on adults with autism, women with autism and non-binary people with autism – which are all areas that are underrepresented. So this is really good. They identified where this research can lead next, which is great. They discuss how their research is not necessarily relevant to all autistic people, but still it has applicability and manages to catch a nice snapshot of various populations.
Conclusion
This is a good study that provides some interesting points. It does have limitations, which we discussed above so is probably not completed applicable. But it has a lot of strengths and, even with the limitations, does what it sets out to do.
Finally there are my feelings on camouflaging. I am slowly trying to change my life so I am camouflaging less at the moment, as I have seen what camouflaging does to my mental health and I want to be happy and healthy. As there is evidence that mental health in autistic people is not great (referring back to the suicide figures from earlier as one bit) then I feel like there is something that needs to change. While there may be genetic reasons why autistic people are more likely to have mental health problems, I feel that addressing social reasons is still going to help regardless and everything I saw in this study reinforces my feeling that camouflaging is a contributing factor to this.
Does this mean I’m going to stop camouflaging (really nailing that spelling now). No. There are benefits from it and sadly it is a part of living in the world. But what it does mean is I am trying to do it less and accept my awesome. If I feel the need to stim, then I am going to do it. If someone has a problem with it, then I’m ok explaining that. If I need to walk away during a social situation, then I’m going to do it. What I have found so far is that if I do something like that then it doesn’t cause the world to end. It doesn’t really have much of a consequence at all, apart from I feel a bit more comfortable being me. I want to work on my ability to be brilliant as me, which probably isn’t going to be easy, but will probably make me happier in the long term.
References:
Critical Appraisal Skills Programme. (Last accessed: 23rd February 2019). CASP Checklist: 10 questions to help you make sense of Qualitative research. (URL: http://www.casp-uk.net)
Hirvikoski, T. Et al. (2016), Premature mortality in autistic spectrum disorder. The British Journal of Psychiatry. 208. 232-238.
Hill, L. Petrides, K. Allison, C. Smith, P. Baron-Cohen, S. Meng-Chuan, L. Mandy, W. (2017) “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. J Autism Dev Disord. 47. 2519-2534.
Musingsofanaspie (2013). The myth of passing (URL: https://musingsofanaspie.com/2013/10/24/the-myth-of-passing/) Last accessed: 23rd February 2019.
Red Mage Darni 