To mask or not to mask autism (giving up to pass as NT)

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JSBACH
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15 Aug 2018, 10:57 am

Hi everyone,

I would like to read your advice, remarks, thoughts and/or suggestions on the following subject. It is a lengthy post. For increasing clarity of the issue, I divide it into three parts: situation, example and questions!

Situation:
To many people, I'm able to pass as NT (I have an official autism diagnosis), however, this comes at a very high cost!
I often find myself completely overwhelmed after social engagements, sometimes needing multiple days to recover. I am seriously doubting wether or not it is worth to spend so much energy on trying to pass as normal. (The cost/benefit ratio is completely out of balance).

Example:
On an obligatory after work party, a colleague that sees me on a regular basis asked if I had a girlfriend. I answered that I'm not social enough to maintain a relationship. With disbelief she disagreed with my statement, saying I was so social, well mannered, easy going...
A friend of mine said upon disclosing my diagnosis, that he had not noticed it, but that he assumed I must be masking very well because of high intelligence.
It are mostly people who work with me on a daily basis that notice something off, only few are able to pinpoint this weirdness directly as being autistic.

I feel like playing a strategic game on every social occasion. Controlling all parameters: how often and how long to make eye contact (which I don't find comfortable), not moving (if I don't pay attention, my body starts moving: gentle rocking, tapping feet etc.). This constant acting like in a theatre role playing is so exhausting. I can literally run 20 kilometres and feel like I just came out of bed, however being out of my house for two or three hours, talking to people in busy and noisy places steal more of my energy than running a marathon. (I mean that literally. I love long distance running).
I'm still a student. Studying for hours per day for an exam at university: only mild usage of energy resources. Taking a public transport ride for one hour: equal to 3-4 hours of studying energy.

Questions(3):
1) How does consciously (not) hiding your autism affect your personal and professional life?

2) Using earplugs in public outings and while talking to people in busy environments is good for my energy conservation and anxiety. Should I refrain from using it to make others feel more comfortable (they think I can't hear them, while I hear everything perfectly)?

3) Gentle stimming (feet tapping, gentle rocking...) really calms me down. However (sorry for this extreme example, I don't know how to state it otherwise) one doesn't masturbate in public because it feels comfortable..., so should I refrain from stimming in public?

To conclude: as a bonus for all my efforts at passing, getting accommodations at university (just got a degree in art) was very hard because I'm not enough visibly disabled. Upcoming September I am starting another study in science at another uni. I really consider giving up my efforts at appearing normal. I'd rather have people know I'm autistic than having them think I'm lazy, uninterested, and on drugs (when very overwhelmed my eyes look like I smoked weed, my speech sounds like I'm drunk. For your information: I don't use substances besides coffee!).

For those who have made it this far, please enlighten me with your experience!


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Trogluddite
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15 Aug 2018, 1:06 pm

Your experiences sound very similar to mine, and I think you're right to think of it as a "cost/benefit" ratio for which you need to find a balance. I've only known my diagnosis for a few years, so lived a long time thinking that masking was just something that I "had to" or "ought to" do, and I'm still working on finding a better balance. I can't really comment on professional life, as I have been out of work for all of the time since my diagnosis, but I have begun to reveal my autistic traits more in my personal life.

The key, I think, is to go slowly and be vigilant for other people's reactions. I have encountered some people who either will not believe my diagnosis or who take the attitude that if I could conceal my traits before, then there is no reason why I shouldn't continue to. Other people have been very understanding when I have described to them why masking is so exhausting and have happily accepted less eye-contact, visible stimming etc. For the most part, those are people who are familiar enough with me to know that I have struggled for a long time with tiredness, insomnia, anxiety and depression - that is, they were already aware of some of the costs, even though they didn't know the causes. I haven't found much difference in the acceptance of say, avoiding eye-contact versus stimming; folks who are prepared to accept one autistic trait have generally been prepared to accept others (though I still avoid potentially more disruptive stims such as pacing around or making noises.)

With the people who have accepted more obvious autistic behaviour, there has definitely been an improvement in my relationships with them. They seem more likely to ask, rather than assume, how to interpret my non-verbal communication, and I feel more able to express myself without "clamming up" out of anxiety. I think it's important to point out to people that finding a compromise between our differing communication styles is not just selfishness - it is for their benefit too. More effective communication means that I can learn to understand them better; feeling less exhausted means that I can spend more time with them; and I'm less likely to have meltdowns or burn-outs that might leave me needing to lean very heavily on them for help or unable to help them when they need me. So, being more open can be a big help, but it's important to remember that this does not just depend on changes in your behaviour, it may depend on others being willing to change theirs; otherwise the risk is that conflicts will arise which are more stressful than the masking (another cost/benefit ratio.)

Outside of those people, I generally still mask unless it's pointed out that some specific trait which is creating a problem, and I try to explain without mentioning autism ("I'm just one of those people who...".) If I won't be spending much time with someone, the stress of explaining won't pay-back through easier interactions later on, so the cost/benefit ratio is different and I'm far more cautious. I do allow some of my autistic behaviours to come out at group social occasions in public, where I have sympathetic friends who will back me up, but not in casual or functional interactions with strangers (unless I'm already too overloaded to have any choice in the matter!)


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Chronos
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15 Aug 2018, 2:36 pm

JSBACH wrote:
Hi everyone,

I would like to read your advice, remarks, thoughts and/or suggestions on the following subject. It is a lengthy post. For increasing clarity of the issue, I divide it into three parts: situation, example and questions!

Situation:
To many people, I'm able to pass as NT (I have an official autism diagnosis), however, this comes at a very high cost!
I often find myself completely overwhelmed after social engagements, sometimes needing multiple days to recover. I am seriously doubting wether or not it is worth to spend so much energy on trying to pass as normal. (The cost/benefit ratio is completely out of balance).

Example:
On an obligatory after work party, a colleague that sees me on a regular basis asked if I had a girlfriend. I answered that I'm not social enough to maintain a relationship. With disbelief she disagreed with my statement, saying I was so social, well mannered, easy going...
A friend of mine said upon disclosing my diagnosis, that he had not noticed it, but that he assumed I must be masking very well because of high intelligence.
It are mostly people who work with me on a daily basis that notice something off, only few are able to pinpoint this weirdness directly as being autistic.

I feel like playing a strategic game on every social occasion. Controlling all parameters: how often and how long to make eye contact (which I don't find comfortable), not moving (if I don't pay attention, my body starts moving: gentle rocking, tapping feet etc.). This constant acting like in a theatre role playing is so exhausting. I can literally run 20 kilometres and feel like I just came out of bed, however being out of my house for two or three hours, talking to people in busy and noisy places steal more of my energy than running a marathon. (I mean that literally. I love long distance running).
I'm still a student. Studying for hours per day for an exam at university: only mild usage of energy resources. Taking a public transport ride for one hour: equal to 3-4 hours of studying energy.

Questions(3):
1) How does consciously (not) hiding your autism affect your personal and professional life?

2) Using earplugs in public outings and while talking to people in busy environments is good for my energy conservation and anxiety. Should I refrain from using it to make others feel more comfortable (they think I can't hear them, while I hear everything perfectly)?

3) Gentle stimming (feet tapping, gentle rocking...) really calms me down. However (sorry for this extreme example, I don't know how to state it otherwise) one doesn't masturbate in public because it feels comfortable..., so should I refrain from stimming in public?

To conclude: as a bonus for all my efforts at passing, getting accommodations at university (just got a degree in art) was very hard because I'm not enough visibly disabled. Upcoming September I am starting another study in science at another uni. I really consider giving up my efforts at appearing normal. I'd rather have people know I'm autistic than having them think I'm lazy, uninterested, and on drugs (when very overwhelmed my eyes look like I smoked weed, my speech sounds like I'm drunk. For your information: I don't use substances besides coffee!).

For those who have made it this far, please enlighten me with your experience!


These are issues encountered by just about everyone with invisible differences.



hellhole
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16 Aug 2018, 8:21 pm

I probably pass as NT without trying. I’m not 100% on how you could tell if someone is on the spectrum anyway... I know some of those people have certain mannerisms that sort of give it away, but let’s be honest plenty of NT have those traits too; there’s no crime in being ‘quirky’.

I guess it depends on how unusual you come off, if you do come off like that it might be worth masking it, but elsewise I wouldn’t really bother. Unfortunately, there are people out there who will pick on you over anything, but I don’t think you should have to change your behaviour just because of that. You know what they say, they don’t pick on you because they want you to change, they do it because they’re looking for someone to pick on... :|


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16 Aug 2018, 8:56 pm

Cost benefit analysis is a good way to think of it. Would you lose more than you would gain if you stopped "masking"? The answer to that question changes throughout one's lifetime and only you know the answer to that.

Examples:

Someone in their twenties or thirties may have a strong desire to have a meaningful long term relationship, family and friendships and finds that some level of masking results in better opportunities while dating and searching for a mate rather than no masking at all.

In this same age group someone may have a need to mask in order to obtain, keep or improve their employment rather than go to interviews not masking at all and with lackluster success.

HOWEVER, perhaps a person is or was in a solid relationship, has or has had a family, doesn't want friends, is financially stable after years of working and is in a position to say "screw it", and decide they're done feeling like they need to be a trained monkey any longer. In effect, they choose to "retire" from masking with aplomb and no apologies. After all, it is indisputably, work. I wonder if there is some of this in the age old stereotype of the older man who seems to turn "crotchety"?

I'm much closer to the latter than the two former examples.



Last edited by Magna on 16 Aug 2018, 10:17 pm, edited 1 time in total.

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16 Aug 2018, 9:24 pm

For the most part, I don't think that people who see me would figure it out. Though I wouldn't be surprised to know that they think I might be a bit odd. I'm fine with that.

I think that since Autism wasn't widely discussed or understood when I was growing up, I managed to adapt myself to function "as an NT", though it took work. Yet, since I didn't know any different I wasn't really aware of it being work.

Over the past few years, I believe that my 'symptoms' have progressed. My socialization and anxiety have become worse, and I find that things like my ADD have certainly gotten much worse, to the point where I can't read a book because I no longer have the attention span to maintain reading it. I've now opted for audio books. Perhaps contributing to this is my eyesight has deteriorated.

Of course, it might just mean that I'm getting old.


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Babi dwr
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17 Aug 2018, 3:57 am

Ive recently tried giving up masking even at this basic level I was still doing it at. Id already had to give it up at the higher level I was before because I had an autistic burnout and couldnt cope any longer. I didnt know thats what was happening at the time either so this is all just looking back.

I would say that my ability to mask saved me because even though I had no idea why, I naturally worked hard planned and saved my way to the type of place I can be comfortable. I moved to that place, quit my job and made the choice to find a more suitable role. It was all driven by what I was feeling with no understanding of autism. I can only tolerate so much and I then have to change my life. Its like I detonate a bomb under everything I 'said' I wanted not long ago and then I begin again with a new plan. Obviously that surprises some people but to me it makes perfect sense. If somethings no longer good for you - just change it. Age helps with that too, Id say dont give up until your secure enough to do so.

What I have found is that when you give it up, you get really rusty and when you do need to resume then you struggle! I would suggest keeping well practiced even if you do give up full time, just take short dips into the NT world and make sure you remember the essential skills of it. You never know when you will need to mask properly again. Im doing that now, working on re-gaining some of the skills because I dont like being my fully exposed asd self, I dont want to be noticed for that. I prefer to be anonymous.



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17 Aug 2018, 4:13 am

Masking is a tool that should be used to get things nothing less, nothing more. Like with anything in life overdoing it leads to problems. With masking they can be quite serious burnout, forgetting who you are, constant anxiety from fear of slipping and bieng exposed.

If masking is thought of as method to become “normal” it is more likely you will overdo it and get clinically depressed because at times you will inevitibly fail at being normal because you are not normal.


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17 Aug 2018, 5:11 am

ASPartOfMe wrote:
Masking is a tool that should be used to get things nothing less, nothing more. Like with anything in life overdoing it leads to problems. With masking they can be quite serious burnout, forgetting who you are, constant anxiety from fear of slipping and bieng exposed.

If masking is thought of as method to become “normal” it is more likely you will overdo it and get clinically depressed because at times you will inevitably fail at being normal because you are not normal.


Great post. I agree. If it helps and feels okay, do it. If it makes you feel bad and isn't helping you, avoid. The long term consequences can be awful.


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17 Aug 2018, 9:19 pm

It's exhausting but a must in order for me to keep my job.