Late diagnosis: How long to unmask?

[zozie]

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?

 

[Raggamuffin]

I can be myself to a certain degree around friends. My partner sees it all. At my current workplace I have no friends, so I mask all day here. The masking and lack of friends has been progressively getting me more and more depressed.

I'm 34 and on a waiting list for an assessment. I wonder if one of the factors I don't socialise much on weekends is because I want to horde as much time as possible where I'm being myself.

Ed

 

[zozie]

I wonder if one of the factors I don't socialise much on weekends is because I want to horde as much time as possible where I'm being myself.

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.

Contrast that with my private life, which is as alone as I can possibly be as a single mom, very quiet, and just so different from the persona I show others. But this quiet is so very needed. I would wonder if I was just hiding from the world, and who would spot me. And then I would go out and be gregarious.

People seemed to like me when I had my mask on. They'd smile, anyway, and tell me that my comments are thought-provoking and interesting. I liked it when they smiled. But I had always felt that I'm a hard person to know. Guess masking is why.

My social life is nearly non-existent. Most of it is online or text-based. No partner. One in-person friend I see every couple of months.

One of the "downsides" of unmasking and getting to a more comfortable baseline is that I want to unmask more often. I want to be comfortable.

Ironically, it's only now, when the mask is off, that people suspect I'm pretending. This makes me angry and frustrated. I feel gaslit. Mask on or off, it would seem that unhappiness is part of the package

 

[Nervous Rex]

At home, I am very much myself. My family and friends know and understand me. In my current working-from-home situation, my desk is full of things for me to fiddle and fidget with that I wouldn't have out when I was working in an office.

I mask extensively at work. Prior to my diagnosis, I just thought of it as a collection of rules to cope: Don't be seen doing anything weird, always be polite, keep personal stories and interests short and to the point, etc. It seems like most of my rules for behavior at work and in social settings are based on my mistrust of people. I don't want to expose any quirks or weaknesses that others can exploit or judge me for. I hope this is a skewed view from reality and that people are generally kinder than that, but I have not overcome it yet. I don't feel like I will fully drop the mask until I retire (which is still years away).

 

[Judge]

IMO there is no correlation between unmasking and receiving any formal diagnosis. Keeping in mind that there will be a very small number of those who will want to understand, and succeed. Still a few more who want to understand, but fail. And the vast majority of those who will simply expect- even demand that you socially conform to a neurological majority. This is our social reality.

So it all comes down to the company you keep or work with at any given moment. Never assume that just because you are formally diagnosed that people will suddenly and miraculously understand and accept who and what you are. The likelihood of that happening is quite remote. Even if and when it involves friends and family.

When do you unmask? Only when you can be comfortable in knowing those around you at a specific moment aren't likely to give you a black eye, scorn you or simply avoid you. Where in most cases you can only safely accomplish this when you come home and close the door on the outside world.

Or you can choose to strip away your mask and attempt to make those around you understand and accept. Which will involve all the energy of a salmon trying to swim upstream surrounded by bears ready to eat you.

Like our autism, masking is for life. Welcome to our world.

 

[Tom]

I am not saying there is anything wrong with your idea of wanting to unmask, be comfortable, etc. But I do not think going far in that direction would work for me. I guess I think of 'masking' in broad terms. Unmasked means raw Aspie nature and Masked means constructed (partially) NT behavior. Sometimes the NT response feels better/more positive then what I might go to with my Aspie inclinations. It means there is no easy street, I must still evaluate each situation anew - but I believe it gives the best results, with relationships, people interactions, work, finances, health, etc, etc.

 

[zozie]

I don't want to expose any quirks or weaknesses that others can exploit or judge me for. I hope this is a skewed view from reality and that people are generally kinder than that, but I have not overcome it yet. I don't feel like I will fully drop the mask until I retire (which is still years away).

It's interesting that you say this. Do you feel like the price of masking outweighs the price of being yourself (in public settings)? As I reflect on your comment, I realize that I've had some traumatic public experiences that I've spent years working through. I wonder if that informs my strong desire to take off the mask, regardless of what people say? But even then, there's a price.

 

[Judge]

As I reflect on your comment, I realize that I've had some traumatic public experiences that I've spent years working through.

Precisely.

Cause and effect. It comes with a nasty learning curve that most of us inevitably abide by rather than resist.

I am retired and live in near isolation. Yet nothing has ever changed for me relative to having to mask, even with a tiny social orbit of those who have known me all my life. But then I didn't choose my relatives...and my friends who did seem to consistently tolerate me have all moved elsewhere and moved on with their lives. Something that I've come to regard as just a part of adulthood for many of us.

Sadly it all sounds harsh, because it is harsh. But you aren't alone.

 

[Rasputin]

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 just turned 62 and was diagnosed with ASD eight months ago. I don't doubt the diagnosis, but have not changed in terms of masking at work. At home I have relaxed masking, and my wife has disclosed some sensory issues to me. She and I both sleep with night masks and weighted blankets, and we are both introverts. She has not been diagnosed, and I do not know if she has ASD or just some ASD traits. She and I'll both hyperfocus when working, and basically get in a zone excluding outside distractions. I don't mask at home, except when my wife's sister visits. My sister-in-law makes fun of my voice rising and other behaviors that she finds weird. So I am acutely aware of masking around her.

One improvement since my diagnosis is I have a better understanding of myself and I have eliminated some sources of stress, such as outside commitments that cause burnout.

 

[Suzanne]

I had my official diagnosis 2 and a bit year's ago now, but even before that, because I suspected strongly that I was on the spectrum, I began to understand why I found eye contact to be so disturbing and in fact, discovered that if I felt uncomfortable with the person, eye contact was difficult, or if someone was talking a lot, I would become too aware.

Now, I am a little more assertive, when telling that I can only do certain things and it is accepted.

 

[elbowgrease]

When I first came across an article about Asperger's (and then read lots of them because they sounded an awful lot like the story of my life), I went through about a month of laughing and crying at the same time and barely sleeping while I reflected on my whole life and feeling like it made sense for the first time.
After receiving a diagnosis, I think it took about a year for me to feel like I had discovered all of the things about myself which couldn't be discovered without knowing about ASD and to unmask (which isn't to say that whatever masking I was doing made me blend in at all. Honestly I think it made people think I was weirder than they would have if I hadn't ever attempted to mask in the first place). For a while during that period, I felt like I was making life-changing discoveries about myself every week. And there were quite a few times I thought things like maybe I'm just making this up, or playing this up, or acting, or making it seem worse than it actually is, maybe the doctor was wrong (it wouldn't be the first time), etc. I feel like I'm pretty much over that now, though.
As far as stimming, I'm not really sure what I was doing before in order to hide it or stop it, so I can't really say how I came to let myself do it. I just know that I do, kind of a lot sometimes, and it doesn't seem like it has the potential to hurt me or anyone else and a lot of times I don't really notice I'm doing it. I do remember the first time I rocked back and forth (or at least the first time I noticed it), during a relatively stressful conversation with a friend while I was trying to explain something and couldn't, I realized I was rocking back and forth pretty hard while I was talking, and can't really describe it better than to say that it made my brain feel good. Almost like spinning in circles to get dizzy but different.
I'm not sure I was ever very good at eye contact. I feel like every time I've ever made an effort to maintain eye contact the other person almost immediately looks away. I really just don't try to maintain eye contact now, other than maybe in attempt to gather information about the person I'm encountering. Which isn't to say that I feel like I get any useful clues from eyes, or really any other part of body language, but that I realize people do things with their eyes in order to express themselves and that sometimes I remember to pay attention to that.
I haven't really been around anyone who knew me before enough to find out if they've noticed a difference. I haven't really met a lot of people or made a lot of friends, and most of them have been in other cities than the one I'm in. I know that very often, people's first impression of me has been something along the lines of intimidating, rough, scary, etc (have heard all of them verified in a roundabout way). So I've sort of assumed that maybe some of that was my attempting to mask, and have heard that some people just get that impression of autistic people anyway, and kind of came to the conclusion when realizing that I was masking, and it wasn't working, and it was all an effort to make other people less uncomfortable around me rather than me more comfortable around them, that I really just need to absolutely not care at all what other people might think of me, or what impression they get from me, and just allow the mask to fall away.
If I'm going to be perceived as something like weird, I might as well act natural.
I was 31 when I stumbled onto an article about Asperger's syndrome, 32 when I got a diagnosis (level 2), 35 now.
I think that the biggest difference for me has been that I'm basically not depressed at all anymore. At least not without a good reason.
Kind of rambling today.

I'd also add that, at various times through the initial year or so of discovery after initial diagnosis, when I was doubting all of it, I came across people's stories posted on another autism forum which were uncannily similar to my own experiences and things I had never heard anyone other than me say or think. And even saw that some of those with whom I shared unique experiences were also even diagnosed at the same level as me (levels are weird). All of that made me feel a lot more comfortable with everything, and doubt it much less.

 

[menander]

A life-altering event.

It made it so I could NOT mask anymore. All my coping skills had to go into just surviving and I had no energy, ability, or where-with-all to navigate the extremely complicated world of masking anymore.

I would rather have not had that event, but I did. But I am happier with myself now.

 

[Streetwise]

Never until I can't fight it ,which has been twice in the past two years

 

[Thinx]

I tend to minimise contact with others and always have, this lessens a need to mask as you noted. Also I am fairly expressionless and still, naturally I think, my mum said I was like that in the cot even, while my older sister, also with high autistic traits or Aspergers, used to sit up in her pram and sing the theme music to radio programmes. Guess I realised I couldn't compete!

On the whole I have never drawn attention, and I have always minimised eye contact. I have not pursued diagnosis as I don't need it for any reason and when I was at work it wouldn't have been helpful, even if it was given which it may not have been bearing in mind that I have always coped financially and am female. For me understanding what autism is explained some aspects of my experience that I hadn't been able to understand previously, and enabled me to stop trying to change or learn in certain areas that I had never progressed with. But also to find strategies that worked for me.

The problem we're up against as @Judge has described, is that we can't 'unmask' to people who do not understand or have a concept of who we are. This is the limiting factor for many minorities, that the external available ideas of who they are are not accurate to who and how they actually are.

One way minorities break out of that to an extent is through depicting themselves in writing, or in film or theatre, media, blogs or arts etc. Or online, on forums. And here we are doing that!

 

[zozie]

Thank you all for your thoughtful and useful replies!

Never assume that just because you are formally diagnosed that people will suddenly and miraculously understand and accept who and what you are. The likelihood of that happening is quite remote. Even if and when it involves friends and family.

When do you unmask? Only when you can be comfortable in knowing those around you at a specific moment aren't likely to give you a black eye, scorn you or simply avoid you. Where in most cases you can only safely accomplish this when you come home and close the door on the outside world.

Or you can choose to strip away your mask and attempt to make those around you understand and accept. Which will involve all the energy of a salmon trying to swim upstream surrounded by bears ready to eat you.

In my case at the moment, I would say especially my friends and family, who are invested in having a relationship with my performance. In this case, I do admit to avoiding any contact with them because I don't want to deal with their reaction to me unmasked. I hope this is temporary and I can weather their response in time, but for now, I doubt they would miraculously accept me, as you pointed out.

One improvement since my diagnosis is I have a better understanding of myself and I have eliminated some sources of stress, such as outside commitments that cause burnout.

This has been a big factor in me coming to terms with my own inner skepticism, as well as the skepticism of others. I've done years of therapy to help resolve trauma that have been quite helpful. Seeing other stressors in my life through the lens of ND and implementing ND solutions has helped me feel more energized.

For a while during that period, I felt like I was making life-changing discoveries about myself every week. And there were quite a few times I thought things like maybe I'm just making this up, or playing this up, or acting, or making it seem worse than it actually is, maybe the doctor was wrong (it wouldn't be the first time), etc. I feel like I'm pretty much over that now, though.

I'm still in this phase, exacerbated by a degree in Philosophy, which is both a blessing and a curse in its ability to question reality.

If I'm going to be perceived as something like weird, I might as well act natural.

I think that the biggest difference for me has been that I'm basically not depressed at all anymore. At least not without a good reason.

Amen to this, and what an amazing difference.

A life-altering event.

It made it so I could NOT mask anymore. All my coping skills had to go into just surviving and I had no energy, ability, or where-with-all to navigate the extremely complicated world of masking anymore.

I would rather have not had that event, but I did. But I am happier with myself now.

This resonates with me a lot. It's clear that we all have our own reasons for masking or not, and when, and mine is related to energy output. I'll put energy into helping myself cope with others' response to me, but for me, it seems less certain that I'll get a return on investment if I put energy into making someone more comfortable around me, as @menander said. And there's just no energy anymore, it seems, to perform for someone else's benefit at the expense of myself. Either that or I'm just sick of it. Maybe it's both.

The problem we're up against as @Judge has described, is that we can't 'unmask' to people who do not understand or have a concept of who we are. This is the limiting factor for many minorities, that the external available ideas of who they are are not accurate to who and how they actually are.

One way minorities break out of that to an extent is through depicting themselves in writing, or in film or theatre, media, blogs or arts etc. Or online, on forums. And here we are doing that!

Then again, as Thinx explains above, no choice comes without a price, such as being misrepresented by the majority who has inaccurate information. I'm grateful for this forum and for the voices here, speaking for themselves.

Thank you again, it means a great deal.

 

[Magna]

Masking is adaptive behavior; it's an adaptation. It's useful in certain circumstances for that reason. It's true, however, that it comes at a price and unfortunately it has a cumulative/latent negative effect over time. After I was diagnosed late in life I didn't have a militant conviction that I would never under any circumstances mask again. After nearly five decades, I was good enough at it where I could pass for NT in interactions of short duration.

In my case, I only stim when I'm under a lot of stress. My main thing is eye contact. I want little to none of it. I also think in pictures so when I'm talking it helps NOT to make eye contact; it helps even more for me to close my eyes when I talk or describe something that requires concentration because I'm basically narrating what I see (my "thoughts") in real time as if the inside of my forehead is a movie screen.

My advice would be not to overthink it. It certainly feels unnatural to mask, but it can also feel unnatural to almost force yourself to unmask in EVERY situation. Maybe that's just me.

One more thing I'd add that I found interesting regarding masking and "passing" for NT: There was some study done in which it was determined that NTs can sense when someone is ND (Neurodiverse) even if the person is masking. The NT person generally won't actually conclude "That person is Neurodiverse/Autistic!", but they perceive something on an instinctual level that they might not be able to pinpoint. There are "high functioning" autistic people that will say things like: "I can pass perfectly as an NT. When I mask, no one can detect that I'm autistic." The study I mention (I wish I'd bookmarked it) found that it's not true. Even for those "perfect" maskers, NTs know that the person isn't NT so in reality, they're not "perfect" maskers even if they think they are.

 

[elbowgrease]

I'm still in this phase, exacerbated by a degree in Philosophy, which is both a blessing and a curse in its ability to question reality.

The love of wisdom can be difficult sometimes.

 

[zozie]

I also think in pictures so when I'm talking it helps NOT to make eye contact; it helps even more for me to close my eyes when I talk or describe something that requires concentration because I'm basically narrating what I see (my "thoughts") in real time as if the inside of my forehead is a movie screen.

I do this, too! Not all the time, but you're right--it's pretty impossible to describe the picture in your head while you're looking into a person's eyes.

My advice would be not to overthink it. It certainly feels unnatural to mask, but it can also feel unnatural to almost force yourself to unmask in EVERY situation. Maybe that's just me.

I'm sure I'm overthinking it at least a little bit. Finding what's natural is a process, it seems.

 

[MyLifeAsAnAspie]

I believe the worst advice you can give to an autistic person is to "just be yourself". I realize masking is very taxing and you may want to cut back on it though. I think I spent much of my life trying to find people who understand me enough to allow my poor masking to be effective. I self-diagnosed around age 20, but didn't embrace or explore ASD until recently. So looking back I probably socially connected with many more ASD people than I had realized. I only know of one who was obvious, I doubt he was diagnosed or self-diagnosed, and I have lost contact with him.

Here is a study of autistic masking and a list of masking techniques used in the study.

https://molecularautism.biomedcentral.com/track/pdf/10.1186/s13229-019-0308-y

https://static-content.springer.com/esm/art:10.1186/s13229-019-0308-y/MediaObjects/13229_2019_308_MOESM1_ESM.docx

 

[Au Naturel]

The mask... part of every Aspie's toolkit.

It isn't much different than the closet. But gays and trans folk are far more accepted today than they once were. So their closet has become somewhat optional. If nothing else they can migrate to the cities where there is greater acceptance.

The mask is not optional. There is no city with Aspie pride parades, no social consensus that you can't fire someone for Aspie traits. No community where I can drop the mask.

Dislike for gays is something taught. It can be unlearned - or better yet - not learned to start with. They have a powerful political bloc to defend them. Aspie behaviors are simply irritating and often seem childish to NTs. One of the few character types you can still insult and make fun of in these days of political correctness. Bullies seem to have radar that allows them to zero in on the vulnerable.

So it isn't optional. My advice is to take it on like an acting role. Study people for hints and clues on how to act like them. Try to figure out what people are feeling and thinking just by looking - listening comes later. Over time I was able to develop algorithms to mimic what I couldn't actually learn. The role can become comfortable and second nature with enough time and effort. You'll make mistakes along the way but as long as there's no blood flowing, shrug your shoulders and move on. Rome wasn't built in a day.

I keep my mask in my back pocket. Even when I'm not wearing clothes. Always right there. Never know when I'll need it.