Late diagnosis: How long to unmask?

[Matthias]

Hi all,

I'm 40 in a few months. I've been referred by my therapist for an ASD assessment. While I wait to be seen, I've begun experimenting with letting my body do what it wants to do and not letting ingrained social expectations get in the way. Taking off the mask.

Sometimes this feels like a relief, like with (more visible) stimming, and other times I am very conscious of how others are responding to me, particularly people who knew me when the full mask was up. Like my therapist and my voc rehab counselor, for example.

How long did it take for the mask to come off?

I used to think the only options were acting 100% autistic or masking everything (black and white thinking). I've since learned that everyone has flaws and many people hide them because they're worried about other people judging them. I've found that what works best for me is being myself (expressing opinions, telling people how I feel, asking questions, taking risks, and not worrying too much about what people might think if I said or did something odd) while avoiding things that I know annoy people. Keeping stims hidden isn't any different than what many non-autistic people do when they have tics, odd quirks, or annoying habits that bother people.

The latest for me is paring down eye contact (I was one of those who would stare as a way of showing that I was listening. Most friends and family remarked that my gaze was intense). I realize now that when I make eye contact, I feel ...overconnected? Like the relationship is unbalanced and I am in an intimate exchange I didn't ask for. And when I don't make eye contact, I feel more comfortable most of the time. Almost as though I'm in a bubble, or shielded somehow.

There are moments, though, when I feel the other person staring at me, willing me to look at them. That's a different kind of uncomfortable.

For those of you who are seeking diagnosis later in life, or who have been diagnosed late, what was your unmasking process? And how did it affect the people who knew the "normal" you before?

And did you ever think, during this process, "I'm not autistic, I'm just broken" because of how much you masked before? And how skeptical some people are now that you're unmasking?

I recommend trying to find a balance between what other people desire and what makes you comfortable. For example, try to look at people's eyes so they think you're interested and paying attention to them but not too much that it makes you uncomfortable. Try to observe other people's eye contact and you'll eventually start looking at people the same way they do.

The hardest part about unmasking and being myself was being afraid of being rejected. I'd feel worse whenever I sensed that people were uncomfortable or were thinking negative thoughts about me. I had to keep reminding myself that I wasn't being rejected and had to go slowly to avoid being overwhelmed by painful emotions. I kept persisting and now I'm able to be myself all the time without masking anything. If you're like me, how quickly you're able to unmask depends on how much painful emotions you can handle. It's hard at first and still hurt even when I knew I wasn't being rejected but it got easier over time and I feel so much better now that I'd never go back to hiding my true self and living in fear ever again.

 

[lateundiagnosed]

i was diagnosed as bipolar but im sure i would pass the autistic test with flying colors. this mask thing everybody talks about is becoming more apparent to me when im around people. they think im so freaking NICE. i cant help it. i help when i can. but this backfires all the time. people think its because im interested in some romantic relationship with them when I'm NOT, its a mask ,its just a mask. i dont want to be in a relationship or anything of the kind. this has been something ive always run into all of my turbulent life. ,just saying. its all soo true.

 

[zozie]

I love all of the different voices on this thread. There's so much to consider and think about, and all of you are making me think in new and important ways.

The hardest part about unmasking and being myself was being afraid of being rejected. I'd feel worse whenever I sensed that people were uncomfortable or were thinking negative thoughts about me. I had to keep reminding myself that I wasn't being rejected and had to go slowly to avoid being overwhelmed by painful emotions. I kept persisting and now I'm able to be myself all the time without masking anything. If you're like me, how quickly you're able to unmask depends on how much painful emotions you can handle. It's hard at first and still hurt even when I knew I wasn't being rejected but it got easier over time and I feel so much better now that I'd never go back to hiding my true self and living in fear ever again.

This advice really resonates with me, especially the living in fear part. For some, it seems masking is a necessary strategy and one would do well to keep it handy. For others, it's intolerable. I'm finding where I stand, though I tend to favor not hiding my true self. It seems NT folks have the same quandary, albeit in different ways or about different things.

Earlier in your post, you say that you took an all-or-nothing approach, which has been my go-to, I realize. And later, you suggest trying to guess how a person is feeling based on how they appear, before they speak. My first thought is that this is absolutely impossible, or maybe I work really hard and get it partially right, but perhaps, with practice, I'll notice enough patterns to get the hang of it.

I am very encouraged by all of the opinions shared here. Again, thank you for being so open with how masking feels for you, and how and when you use it, and why.

 

[Au Naturel]

I love all of the different voices on this thread. There's so much to consider and think about, and all of you are making me think in new and important ways.



This advice really resonates with me, especially the living in fear part. For some, it seems masking is a necessary strategy and one would do well to keep it handy. For others, it's intolerable. I'm finding where I stand, though I tend to favor not hiding my true self. It seems NT folks have the same quandary, albeit in different ways or about different things.

Earlier in your post, you say that you took an all-or-nothing approach, which has been my go-to, I realize. And later, you suggest trying to guess how a person is feeling based on how they appear, before they speak. My first thought is that this is absolutely impossible, or maybe I work really hard and get it partially right, but perhaps, with practice, I'll notice enough patterns to get the hang of it.

I am very encouraged by all of the opinions shared here. Again, thank you for being so open with how masking feels for you, and how and when you use it, and why.

I think you will like this blog post on the topic.

"Hon'ne" and "Tatemae": A Basic Explanation For Westerners, By a Westerner. | This is my place.

 

[SusanLR]

Not much more I can add to all these posts.
I resonate with most of them. Little eye contact, masking at work, thinking in pictures,
being nice resulted in a lot of people thinking along romantic interests when that was not the purpose,
and I loved the one line: Aspie behaviours are simply irritating and often seem childish to NTs.

I was late diagnosed in my fifties and it didn't change any of my ways on masking.
The thing was that I had known I was weird and non-social all my life, but, I didn't care.
I only felt the need to mask when working and I always tried to get employment where I could
either have my own area and I also did a lot of delivery jobs, so I was to myself most of the time.

My parents knew I was different, but, in those days it wasn't picked up on in school like it is today
so they mainly thought, and so did I, that I just didn't care about being social and by age 13
I developed anxiety and panic attacks. So a lot was blamed on that.

I managed to slip through life being pretty much just me which was not masking.
Then came the time I was left with no family and on SSI. I found renting half of a house
from an elderly man who wanted someone to help him around and didn't want to be living alone
was the best I could afford.
THEN I really felt the need to mask. Living with someone I barely knew from the tennis club!
What an experience, plus his temperment leaves a lot to be desired.
I started going to grief counseling, telling him I was having a hard time getting over the loss of my
Mother. It was there, the counselor told me she thought I had Aspergers.
I got the diagnosis and the person I live with actually found my ways more acceptable after
finding out.

 

[zozie]

I think you will like this blog post on the topic.

"Hon'ne" and "Tatemae": A Basic Explanation For Westerners, By a Westerner. | This is my place.

Something in your blog struck me. You write:

To some extent, everybody has to put up fronts to get by in life, multiple fronts for different groups we interface with. American tradition has it that it is duplicitous and immoral to do so yet the penalty for being your true self may be great.

I'm really wondering now what cultural influences my thoughts about masking have. We do tend to be quite individualist in the US, at least on the surface. But we're quite tribal as well, and vicious to those who don't fit in. Darned if you do and darned if you don't.

I'm thinking back to my childhood in Germany. I have American parents but my mother believed strongly that if you live in a foreign country, it's only respectful to get to know the environment, learn the language, and befriend the people. The German way, at least to my 9-year-old self, seemed quite reserved on the surface and quite passionate underneath. Studying German philosophers reveals another layer of intensity and passion.

Is it human to mask, then? And does setting aside the words "pretense" and "duplicity" give the concept a kinder bent?

I'll be pondering this for a while, Au Naturel, thank you.

 

[Judge]

I just see masking as a defense mechanism. Nothing more, nothing less.

Though in American culture I do see the hypocrisy of it all, in that while individual achievement is celebrated, one is easily scorned when they appear different than those in the rest of any one group.

Quite a mixed message in our society.

 

[elbowgrease]

I've always wanted to go to Germany. Haven't made it there yet, though. I was conceived there but born in the US. My step brother and at least one of my stepsisters and maybe my half brother all grew up there. Bamberg and or Baumholder.

 

[Au Naturel]

You could think of masking as a defense mechanism. I grew up thinking it was just politeness. If I had a trait that irritated people I met, I could go hide in a hole, I could let it hang out and not care about the people I was bothering (and alienating) or I could put a cork in it to the extent I could without blowing up.

33 years I have been married and my wife still goes nuts when I start seriously stimming - tapping my foot, thrumming my fingers, or whatever. It irritates her just like multiple confusing conversations drive me up the wall. I know for a fact that many people are bugged by pronounced stimming. So yes. I do clamp down on stimming. If I have other habits that annoy, I'll try to limit those too. Like my voice getting higher and louder as I continue talking, loud laughter in a quiet setting, (I really do have volume control issues.) or compulsively correcting every mistake made by others. (I keep my clothes on too.) I will try to act in a way that does not cause disruptions in the office.

I think of it as acting and my work role was unemotional but supportive tech or unflappable engineer. I have a different role at home. I also think of it as courtesy. I am the outlier and it is unreasonable to expect the entire world to arrange itself around my needs.

 

[Matthias]

You could think of masking as a defense mechanism. I grew up thinking it was just politeness...

I think what you described is politeness. I don't think of hiding stimming and other behaviors that bother people as masking if you're still being yourself. I see masking as not expressing how you feel or avoiding doing something because you think someone might be bothered by it or because you're worried people might think you're weird. That kind of masking (being afraid to say or do anything that might cause someone to react negatively) can be very stressful and cause you to feel alone even when you have friends since no one knows the real you. Simply hiding odd behaviors is much easier and something I think is often a good idea as long as you're still being yourself.

 

[some/aspies/need/hugs/13]

I actually don't mask unless I need to hide something very important sometimes it has been a great thing other times it has been a horrible thing. Being masked was never an option for me really I always have some degree of anxiety around others and never really cared what others thought. Most of the time I hide some of the worse stuff. Usually I mask with guys to a degree but not with girls. Some things to consider are that masking is good for certain situations like work, public gatherings, etc. Now for the downside sometimes you will use the mask when you shouldn't and vice versa. For example my cousin and his wife when I go out to eat I will usually get sensory issues because he chooses loud restaurants, I usually hug his wife afterwards and she studies psychology and understands the reason but from this he intuited that he should hug me as well and I hate male hugs but I have to mask and pretend everything is ok so as to not make him upset.

 

[Ursus Chainus]

Hi all,

I'm 40 in a few months. I've been referred by my therapist for an ASD assessment. While I wait to be seen, I've begun experimenting with letting my body do what it wants to do and not letting ingrained social expectations get in the way. Taking off the mask.

Sometimes this feels like a relief, like with (more visible) stimming, and other times I am very conscious of how others are responding to me, particularly people who knew me when the full mask was up. Like my therapist and my voc rehab counselor, for example.

How long did it take for the mask to come off? The latest for me is paring down eye contact (I was one of those who would stare as a way of showing that I was listening. Most friends and family remarked that my gaze was intense). I realize now that when I make eye contact, I feel ...overconnected? Like the relationship is unbalanced and I am in an intimate exchange I didn't ask for. And when I don't make eye contact, I feel more comfortable most of the time. Almost as though I'm in a bubble, or shielded somehow.

There are moments, though, when I feel the other person staring at me, willing me to look at them. That's a different kind of uncomfortable.

For those of you who are seeking diagnosis later in life, or who have been diagnosed late, what was your unmasking process? And how did it affect the people who knew the "normal" you before?

And did you ever think, during this process, "I'm not autistic, I'm just broken" because of how much you masked before? And how skeptical some people are now that you're unmasking?

I actually don't have a mask because I am a very odd kind of aspie. I could never focus long enough to figure out how to have one or what a mask should look like. I have rules instead about what to do and not to do. I am very WYSIWYG. Because of this, I have developed methods of dealing with my feelings by focusing on my breath. My feelings make absolutely no sense to most people.

so... I may not have a mask but I felt that I could not be myself without massive problems.

My stimming and meltdowns are very different from most. I stim by saying certain phrases in my head over and over. My meltdowns are rare and usually come from emotional overload. I am generally OK with many things that are hard for other aspies. I actually enjoy crowds of people because I like to watch people... preferably "under dressed" people at festivals like burning man. Bodies are fascinating.

I generally like looking women in the eyes if I find them attractive. That usually led to sex. Men often seem to feel threatened by me looking them in the eyes, so I avoid it by looking at the top of their noses.

All of this being said. I used to feel totally like I was fake. They call this "imposter syndrome".

How Autism Can Cause Imposter Syndrome — Adultistic: A Space for Adults with Autism

Almost all oppressed minorities (ASD is a cognitive minority) and many women feel this. My young black male friend has it horribly bad... most white NT hetero men don't have it. The feeling of fakeness comes from repeatedly having one's experiences invalidated by people who don't have the same experiences. I feel the mask is a way of dealing with this. Basically, your experiences are real and valid regardless of having a mask or not.

You are not broken. You are simply doing the very best you can in this totally upside down world.

 

[Au Naturel]

Rules about what to do. Yes! My social life is a thing of algorithms. A chain of if-then statements. I don't get emotionally vested in authenticity, it is a matter of whatever works. Everyone is fake when you first meet them.

I also think of it as acting. If I can act like a sophisticated socialite or a college professor I don't have to be one. Nobody you meet (except maybe a police detective with a suspect) wants to look past the facade. I may not win friends and influence people but I also don't get written off as a twit. That is important to me.

I also like watching bodies. They tell more than the words people speak. Body language can be learned as there are common rules.

 

[Rae Ray]

Rules about what to do. Yes! My social life is a thing of algorithms. A chain of if-then statements. I don't get emotionally vested in authenticity, it is a matter of whatever works. Everyone is fake when you first meet them.

I also think of it as acting. If I can act like a sophisticated socialite or a college professor I don't have to be one. Nobody you meet (except maybe a police detective with a suspect) wants to look past the facade. I may not win friends and influence people but I also don't get written off as a twit. That is important to me.

I also like watching bodies. They tell more than the words people speak. Body language can be learned as there are common rules.

True that,,, True that

 

[Rae Ray]

Not much more I can add to all these posts.
I resonate with most of them. Little eye contact, masking at work, thinking in pictures,
being nice resulted in a lot of people thinking along romantic interests when that was not the purpose,
and I loved the one line: Aspie behaviours are simply irritating and often seem childish to NTs.

I was late diagnosed in my fifties and it didn't change any of my ways on masking.
The thing was that I had known I was weird and non-social all my life, but, I didn't care.
I only felt the need to mask when working and I always tried to get employment where I could
either have my own area and I also did a lot of delivery jobs, so I was to myself most of the time.

My parents knew I was different, but, in those days it wasn't picked up on in school like it is today
so they mainly thought, and so did I, that I just didn't care about being social and by age 13
I developed anxiety and panic attacks. So a lot was blamed on that.

I managed to slip through life being pretty much just me which was not masking.
Then came the time I was left with no family and on SSI. I found renting half of a house
from an elderly man who wanted someone to help him around and didn't want to be living alone
was the best I could afford.
THEN I really felt the need to mask. Living with someone I barely knew from the tennis club!
What an experience, plus his temperment leaves a lot to be desired.
I started going to grief counseling, telling him I was having a hard time getting over the loss of my
Mother. It was there, the counselor told me she thought I had Aspergers.
I got the diagnosis and the person I live with actually found my ways more acceptable after
finding out.

I've had a lot of people after a while of knowing me say, "what's up with you" and I say, "I have ASD w/OCD and they all say back, "That answers a lot of questions." So, when it comes to masking, I don't think it works as good as we think.

 

[SDRSpark]

This really hits home. I've come to realize that I am one of those people who exaggerated socially. Gregarious, lively, lots of inflection and theatrics. I thought that everyone felt a sense of performance when it came to being social. Not always the life of the party, but often in the inner circle.

This is me. I'm known for my smile...for my "positive attitude"...it's so weird and disconcerting to have people comment on how happy I am when I'm severely depressed. They can't see it. I'm a stunning actress.

I'm sitting here typing this with a complete deadpan face.

If someone were to come up to me right now I would *come on* like someone flipped a switch...the doll comes to life...I can't imagine it's not strange to observe my mask go on. It's strange to feel, now that I'm aware of it.

 

[Rae Ray]

Hi all,

I'm 40 in a few months. I've been referred by my therapist for an ASD assessment. While I wait to be seen, I've begun experimenting with letting my body do what it wants to do and not letting ingrained social expectations get in the way. Taking off the mask.

Sometimes this feels like a relief, like with (more visible) stimming, and other times I am very conscious of how others are responding to me, particularly people who knew me when the full mask was up. Like my therapist and my voc rehab counselor, for example.

How long did it take for the mask to come off? The latest for me is paring down eye contact (I was one of those who would stare as a way of showing that I was listening. Most friends and family remarked that my gaze was intense). I realize now that when I make eye contact, I feel ...overconnected? Like the relationship is unbalanced and I am in an intimate exchange I didn't ask for. And when I don't make eye contact, I feel more comfortable most of the time. Almost as though I'm in a bubble, or shielded somehow.

There are moments, though, when I feel the other person staring at me, willing me to look at them. That's a different kind of uncomfortable.

For those of you who are seeking diagnosis later in life, or who have been diagnosed late, what was your unmasking process? And how did it affect the people who knew the "normal" you before?

And did you ever think, during this process, "I'm not autistic, I'm just broken" because of how much you masked before? And how skeptical some people are now that you're unmasking?

I totally agree about putting on masks and I do it all the time. We all may be doing it. I think it's a coping mechanism we have all devised to cover up our ASD imperfections and flaws. The crazy part about it is, as many times as I do the masking, no matter how hard I try, I find it falling off and a lot of time I don't realize it has come off. The times I realize it has fallen off is when others start treating me differently and then I have to scurry off and put it back on. That's the biggest problem I have with masking. I have to constantly have to be aware that I am wearing one, so I can catch it when it starts to fall off. It also leaves me extremely exhausted to the point of being totally depleted. Another thing it does, it also makes me feel like a phony.

 

[Ursus Chainus]

A chain of if-then statements.

Just as long as they are not nested if-then statements... that is a sign of bad code

 

[Ursus Chainus]

This is me. I'm known for my smile...for my "positive attitude"...it's so weird and disconcerting to have people comment on how happy I am when I'm severely depressed. They can't see it. I'm a stunning actress.

I'm sitting here typing this with a complete deadpan face.

If someone were to come up to me right now I would *come on* like someone flipped a switch...the doll comes to life...I can't imagine it's not strange to observe my mask go on. It's strange to feel, now that I'm aware of it.

It is amazing how shallow people are! They only seem to look at the surface and don't see any deeper. People smiling can't hide their depression, pain or sadness from me. I see that first... sometimes I react and I think they feel violated... like I saw them naked.

What drives me nuts (I had a conversation with someone recently about this who experiences it too) is that because I actually don't even have the slightest idea how to put on a mask because I don't know what to mask... If I look a woman in the eyes and show my normal deeply caring self, they think "Oh... sex!"

I like looking in eyes but I have learned to avoid it because of sh*t like this. I think I am one of the few guys who hears the words "friendzone" and finds that delightful.

I had a bit of a double whammy recently where a new person (a woman) started at the company I work at. She had not worked for a while and I could feel she was really nervous about doing a good job. Unfortunately I also found her attractive... eep! So I couldn't help but look her in the eyes and I couldn't help but care... because that is me.

People tell me that when they are spending time with me... they feel like they are the only person in the world. She felt that and we became close as friends. It all blew up... probably because I didn't make a move (and would not have). At that point my aspieness became an issue and the relationship imploded. So utterly painful!

Sticking with fellow aspies from this point on... hell, at least most of us use words... not face wiggles!

 

[Au Naturel]

This is me. I'm known for my smile...for my "positive attitude"...it's so weird and disconcerting to have people comment on how happy I am when I'm severely depressed. They can't see it. I'm a stunning actress.

I'm sitting here typing this with a complete deadpan face.

If someone were to come up to me right now I would *come on* like someone flipped a switch...the doll comes to life...I can't imagine it's not strange to observe my mask go on. It's strange to feel, now that I'm aware of it.

Smiling depression is a real thing. It is ok to hide your inner issues from random people in your life. It is none of their affair. Just don't don't hide them from yourself.