to not understand the concept of masking

[tattooedteagal]

I'm trying to understand better due to my son's autism, but the notion of masking ADHD or autism doesn't make a lot of sense to me. Surely if you understand social cues enough to put on a convincing facade throughout your childhood or adulthood, it contradicts one of the core definitions of autism. Feel free to correct me. I'm not saying I'm right (I'm probably wrong) I'm just struggling to understand.

I have ADHD and it was picked up on when I was 14 so I'm obviously crap at masking. It's caused me a lot of issues and I don't want to gatekeep ADHD, but it annoys me when people think they might have it because they get irritated at slow drivers or have a clutter drawer in their house.

I don't have autism, but I do have quite a severe anxiety disorder, and although both are similar, they come from different places. However, I spend 95% of my working life masking to some degree. I can't handle social situations, even with people I know, and unfortunately for me 100% of my job is social to some degree. People think I'm confident, and in control, and at ease, whereas in reality it's constantly painful. As a result, when I get home I'm exhausted, and over time this emotional exhaustion builds and builds, my copy strategies stop working, and I end up with even more severe anxiety and depression. This has gotten worse over the years to the point where if I could have a people free job like data entry WFH I would. I'm running mentally at full pelt toward retirement where I can just breath and relax.
So to answer your question, yes, masking exists, and (unlike me) you don't have to know you're doing it, to do it, to just get by until you can shut your triggers and stressors off and be at peace.

Every one "camouflages" in that we adapt our behaviour to the environment. Respectful at a funeral, shouting at a football match etc. Masking is similar but to the maskers detriment in that it takes more effort, is not instinctive, and is a façade /act/roleplay rather than the real thing.

I was t really sure about masking until recently but my experience may help with a bit of an explanation:

I’m fairly sure that I have ASD based on what I was like as a child and teenager and because there is a lot of it in my family. It took me a long time to work out social rules but because I was always keen to be well behaved, my social struggles weren’t as much of a red flag as they would have been if I’d been acting out as well. I didn’t perfect my mask until my early 20s and even then it would slip occasionally.

However, I didn’t even realise that this was masking until I became chronically ill a few years ago. I have debilitating fatigue and other unpleasant symptoms constantly now and although I just about manage to work part time, maintain my relationship with my partner and be a semi decent parent, the social stuff which I used to be so good at masking has just gone. I struggle to make small talk, to make eye contact, to smile engagingly when I meet someone - all the little things that I taught myself and practiced over and over again until I thought they felt natural. I’m too ill and I’m too tired to put the mask on now (apart from on odd occasions when it is a superhuman effort). And that has left me feeling very exposed and very aware of how much I was masking for my entire adult life.

That's only a tiny part of masking. Imagine for a moment that you couldn't see facial expressions unless you focused 90% of your mental capacity on examining every aspect of somebody's facial movements - while you're talking to them, you have to check the position of the eyebrows, the shape of their eyes (but you can't look at their eyes), the shape of their mouth, the way they're moving their head, the direction of the pitch in their voice as they're speaking, the intonation and cadence of their speech...

And, while you're doing that, you're trying to pick out their voice while every noise around you is just as loud or louder than their voice, no matter how faint it is to other people.

While that's going on, you also have to remember to move your own face in the way that they expect relative to what theirs is doing and in relation to what they're saying.

Finally, alongside all of that conscious effort, you still have to reserve enough concentration to track the conversation's position in the script you've prepared - which isn't a single linear script, but more of a decision tree like a Choose Your Own Adventure book but includes body movements and social cue responses as well as the words you've got to repeat. And, of course, deciding how to react if the conversation strays out of it - at which point it's like searching a database of films, books and previous conversations for possible similarities.

That's what masking looks like from the inside - it's not just hiding emotional responses and the like.

Most people with autism end up not being able to live in the expected normative way unfortunately. Even those who seem to be on their way to learning how to adequately mask their traits. Eventually something ‘gives’, the ability to self care, to hold down a job, manage household admin/bills, mental health, holding relationships… there are so many things people don’t think about longterm with what they consider to be ‘high functioning/low needs’ ASD that when they inevitably come crashing down around them they don’t even recognise it as a consequence of not understanding that autism is that disabling - able to communicate or not.

For me masking means I am constantly analysing my behaviour and what I say to people and whether I am asking questions in the right places and not going on about my special interests instead of having an actual two way conversation. It means I don't make the random noises like I do at home or blurt out random phrases with no context. I don't stim my hands (or if I do I do it under a table or when I go to the toilet) like I do at home.

I do all this and then I go home exhausted from the mental pressure and I go over and over every conversation I had just in case I said something wrong, and then worry that whoever I was talking to thinks I'm weird and didn't like me.

This happens to virtually everyone I meet, unless it's either my partner, or my few good friends. And even then sometimes I worry I've said the wrong thing. And none of them have seen my stim, or heard my vocal stims.

After meeting people I usually go into shutdown and can't physically move and have to sleep it off.

I wasn't talking about global delays or learning difficulties, just purely ASD. Yes I totally accept that you can have specific deficits in particular areas where others don't etc..but the levels indicate need and severity of symptoms of ASD.

Therefore imo it's perfectly acceptable to say someone has severe or perhaps profound autism whereas someone on level one like DC may consider themselves to have 'mild autism'. I don't see anything wrong with that as she doesn't see her need as being the same.

If you had an illness such as asthma that only requires salbutamol now and again rather than daily steroids etc...you would describe it as mild asthma perhaps. It doesn't mean it may not develop or that it shouldn't be taken seriously but day to day the same intervention isn't required

Another reason why I don't accept use of the term 'mild'.

Neurodiversity is not an illness, so using in in conjunction with terms that are used to quantify the severity of actual illnesses just perpetuates yet more myth and misinformation.

Most people with autism end up not being able to live in the expected normative way unfortunately.

Being able to live in the expected normative way, and not being able to live independently are two different things though. My work brings me into contact with many adults with an autism diagnosis and while they absolutely have challenges to varying degrees and need mental health support at various points they are generally able to sustain employment and a home. They are living an independent life.

Its not the same as never being able to get a job, manage a tenancy, mobilise independently, have a social life, be able to dress and feed themselves, manage finances etc which I also see in my line of work.

I’m not saying there aren’t significant challenges, or that people with autism who manage independence aren’t struggling and in need of care and support. I am saying that comparing my DCs autism presentation with that of @surveythebest is comparing apples and pears though the diagnosis is the same.

Personally I think a lot of people want to label themselves as ‘mild autism’ as they don’t want to be associated with those with higher needs. That there’s some sort of shame being labelled the same condition as those who are non-verbal and have high care needs. I’m not saying this is you or your daughter but I do take issue with the term ‘mild’ autism when there’s really no such thing. The spectrum isn’t a line from bad to passably ‘normal’ because you’ve learned to mask well.

I understand it like this - please correct me if I'm wrong.

I'm (as far as I know) neurotypical. I have a slight, not phobia as such (as I can go up tall buildings in a glass lift etc) but fear of heights- when there is a chance of falling from them, anyway. Mostly I'm ok but I can get vertigo on stairs and escalators from time to time. In spite of this, as DH loves mountains I have tried to overcome it and have hiked/scrambled up some mountains - by the easier route with no narrow ridges or big drops. Still, it takes me a long time to come down - pensioners zooming past me - the up is fine, I'm quite quick, it's not a fitness issue. I start getting jelly legs on the way down and end up bottom shuffling. If there was a big drop I'd freeze completely. The whole thing is exhausting - not because of the physical side, but it's mentally and emotionally exhausting as I'm afraid. On the way up my brain is saying "What if you get stuck? What if you find this bit too steep on the way down?" and so on.

I think this is what it's like for DD2 (ASD, ADHD) to go to secondary school. It's like climbing a mountain every day. She may look fine on the surface, swan-like, but the legs are swimming nineteen to the dozen underneath the surface.

@PietariKontio

You don’t have an autism diagnosis, but what you’ve described sounds like autism to me.

I wouldn't know what other people do because I'm not in their heads. The NT "experts" who have compiled the diagnostic criteria tell us that having to consciously and carefully monitor our facial expressions, tone of voice, and body language our whole lives without it ever becoming instinctual isn't normal. So I'm going on that.

I suppose I only gave half an answer, excluding the things I have to make sure I don't do.
As well as closely monitoring the things I should do in order to appear "normal" I'm also suppressing the urge to stim (which for me is hand flapping when I'm stressed, little dances and hops when I'm happy, vocal stims such as meowing or repeating a sentence over and over), not grimacing and covering my eyes when it's too bright or my ears when something is too loud, not scratching at uncomfortable clothing and fidgeting in general. Not getting distracted by background noise and conversations in order to focus on what the person I'm talking to is saying. Not droning on about my special interests.

This is the first few hours of my morning when I have to go into the office.
Wake up on alarm.
Check written morning routine list and tick off as I go through it (like brush teeth, brush hair, open window on catch, make bed etc). If I don’t I will likely miss something. I hate brushing my teeth because of sensory issues but I know that it is socially unacceptable to have bad breath so it goes on the list of morning ‘rules’.
Practice potential conversations out loud in the shower.
Leave two hours earlier than I need to, to ensure without a doubt there is a parking space and am able to use the same one everytime (I have huge parking anxiety/stress).
Get to my desk (as I now finally have my own desk rather than being forced to hot desk) to find the cleaner has moved things into the wrong position. Luckily I am the only one there so can allow myself to process this by swearing out loud and having a mini meltdown without being accused of ‘over reacting’.
Go through my computer switching on routine and office day set up.
Practice in my head saying good morning or hello the ‘correct’ way for the next person that comes in.
Next person comes in and I say ‘Morning’ in what I think is a cheerful way. Person doesn’t respond. Did I not say it loud enough and they didn’t hear? Did they not see me? Should I stand up and say it again? Was it not as cheerful as I thought? Do they just not want to say good morning? Are they going to tell others about how rubbish I am at saying good morning?
Now I want my morning cappuccino using the machine. I am the only one with the pods. Should I offer one to the other person here? But if they say yes, then I’ll have to give them some of my pods and I don’t really want to but then people might say I’m selfish so maybe I should. But I’ve never seen that person drink cappuccino so should I just say do you want a drink? But then I’ll have to make a separate drink when I’m only making cappuccino. But that’s what everyone does and it’s a big social thing so I definitely should do it and ask.
Work up courage to ask if they want a drink and they say no thanks.
Is that because they know I’m really not bothered if they want a drink or not? Did I not say it with enough enthusiasm to make them think I care about whether they have a drink?
Make my drink and take back to my desk. Wonder if I should ask that other person how they are? Agonise over it then decide to avoid it.
Other person’s shoes are squeaking everytime they move and now they are jiggling their feet which makes it worse. Is it too early to get my noise cancelling headphones out? Will other person think I’m being rude. The noise of the shoes is making it impossible to concentrate and I want to blurt out stop jiggling your bloody feet to them to make it stop but then I will be considered rude and overreacting so I take deep breathes to try to calm down and put all my energy into trying to ignore it.
More people arrive and the noise level increases with chatter and screeching which is like needles into my brain. Secretly check social notes I keep to remember who has been doing what and silently practice asking things like ‘oh how is your dog? It was ill wasn’t it?’ and ‘how was your daughters play?’. I don’t actually have any interest in these things but this is what you have to do to maintain relationships at work so no one thinks you’re a horrible person.
Someone turns the heating up and it is now uncomfortably hot for me. Can’t ask to turn it down as everyone might think I’m inconsiderate. Stress levels start to rapidly increase. Secretly start stimming with a fidget cube to try and regain some balance.
More noise now because the window has been opened and they are mowing grass outside. Something else is buzzing. People are still screeching. It is too hot. All I want to do is go and curl up under a blanket or get in my shower but I have to maintain a smile and interact with people that have questions.
Someone says something and I have no idea if it’s a joke or serious so don’t know the appropriate response. Instead I just sort of half smile and rack my brains for something ‘small talk’ to say even though small talk is excruciating for me. Another person asks what I did at the weekend and I’m not sure how to answer. I did nothing basically except a jigsaw and drank wine, but if I tell the truth will they think I’m weird and laugh that I have no friends? So should I lie? But what would be acceptable? In the end just say what I’ve heard others say previously ‘just a quiet one’ which is supposedly a normal response.
I need to be left alone now so give in and put headphones on.
Things level out a little as people go off to different tasks. Balance is starting to be regained a little. Get told by manager that I need to do something else today instead of what I had planned and prepared to do. Get incredibly stressed about this but can’t show it as I need to be flexible and not ‘difficult’ or ‘uncooperative’. Anxiety is now through the roof but can’t show that either so use a huge amount of energy to internalise it.
Now the headphones are hurting and I can hear my own heartbeat so I need to take them off, but then someone might talk to me and I haven’t practiced what to say yet and I’m trying to do this thing that wasn’t in my plan today and it’s completely thrown me off so I keep them on. But now I am in pain and too hot and I can hear my heartbeat even more. End up taking them off.
I can hear a conversation happening across the way and I know the answer to their query. Do I go over there? Do I stand up and say it from here? Do I do nothing? Will they think I’m butting in even though I could solve the issue for them? Will they think I’m just being a know it all and tell everyone later? In the end I do nothing because it’s too much of a social minefield to navigate.
Enter online meeting. Am forced to turn camera on and therefore have to consciously manage expressions, eye contact with the camera and not obviously stimming. Accidentally interrupt people multiple times as I thought they had finished. Generate awkward silences by finishing what I’m saying too early then having to think of something else to say to fill the space. Wonder constantly if the awkward silences are because I have said something wrong or accidentally offended someone. Struggle to follow things being said because auditory processing is hard and I’m too busy trying to work out other people’s expressions and what they mean.
After meeting spend time analysing the meeting and what I might have done wrong and whether people now think I’m a horrible person. (Will do this multiple times over the next days, weeks).

Thats just a tiny, tiny snapshot of only a couple of hours at work. It’s fucking EXHAUSTING.

You either meet the criterion for a diagnosis of Autism or you do not. The children you are describing are the people with Autism who also have some more profound learning difficulties and lower IQ's. They are no 'more' Autistic than any other person with Autism, they have different comorbidities.

I'm sorry @XDownwiththissortofthingX but you're wrong. I've spent my entire career teaching children with severe autism, and some of them absolutely did not have any co-morbidities or learning difficulties.
For example, in my last class before I retired, I had a non-verbal child, prone to meltdowns, but otherwise relatively uncomplicated compared to most of his classmates.
It was clear to me from his behaviour and the way he responded to activities and occupied himself in free time, that he was very intelligent. I could write an essay on him. He was a fascinating child to teach.

But having said that, it didn't make his parents' life any easier. They were amazing people, really tuned into him, but their lives were hugely restricted, and their worries for his future immense.

He was definitely 'more' autistic than my daughter, who was recently diagnosed. And as she also teaches autistic children in a special school, she'd agree with me.
Differently autistic could also cover it, but in practical terms, autistic people who can communicate, work and have relationships (and who often run and dominate autism support groups these days) are not always empathetic to the needs of the parents of children like my pupil.

Typical stuff on this thread. People angry at any suggestion their autism is "milder" and the reminders that it is a proper, clinical diagnosis and then everyone undermining that by suggesting someone who's a bit anxious or shy (or often if someone has been rude) is probably autistic, especially if their child is, based on one reported trait disclosed on the internet.

The PP diagnosed with an anxiety disorder that a later poster said "sounds like autism" may have pursued that path and had the diagnosis ruled out. Anxiety is comorbid but it is not the same thing!

Declaring people to have ADHD based on one reported trait (clearly prevalent on social media too, see the posted meme). Eg Having a clutter cupboard doesn't, in itself, mean a person has ADHD.

Lots of people may have a trait or two that can also be found in ND people but it devalues diagnoses to go round "diagnosing" people so glibly online based on hardly anything.

And yes, we all behave differently in different situations and with different people. That's not the same as masking which as far as I know takes considerable effort.

I just want to say that there are some wonderfully descriptive and helpful posts on this thread. They mirror and expand on my DD's description of her masking and intense rule following etc.
As my professional work was with severe and profoundly affected autistic people, I feel as though I'm learning all over again, in order to understand the way my daughter experiences life. Thank you.

My daughter has been masking since she was a toddler she’s now 7 and in the last year it’s all become too much for her . Thankfully shes getting the support , which I can see is helping

As a pre-teen and teen I would practice eye-contact and facial expressions in the mirror. They were not instinctive, but I was able to tell that what I naturally did was not getting the right response from others. Ditto small talk/ saying hello etc.

It is like being in networking mode all day. I think we all know how to be cheery, polite, make small talk in order to hand out a business card/ make a business contact and move on. But it isn't a natural way for most people you interact all day, every day. Think like work being a sale pitch, presentation or job interview.

That is what masking is like. You're trying to disguise any idiosyncrasies long enough to make a sale/ sell yourself. When you know people well, you don't have to do it as much. It gets tiring quickly. So if you have to do it too much, you are more likely to get burnt out or have a meltdown.

When I was younger I copied EVERYTHING. I watched that film The Craft and became obsessed with it so styled myself like them. Then I discovered Friends and basically copied them into my real life……phrases, expressions, acceptable reactions…..etc etc. Copied other girls I admired etc.

Even in adult life I do it. I used to have a colleague who was so good at communicating with others that I would listen and memorise different phrases she used.

@NicJean

i said a PP sounded autistic because I’ve been part of the diagnostic process for many of my female students, and I am an autism researcher. The things she described are autism traits, she might want to investigate.

Is it really that easy to tell from a quick over view of a description? I often twist myself in circles about myself, sometimes I think it’s just adhd traits, sometimes I think it’s pstd from a bad childhood and other times I think I’m just deluding myself out of what is definitely autistic traits…

But then I look at my ex and think ‘Jesus how did no one see you’re autistic up to now’ so perhaps it is obvious if you know what you’re looking for.

I explained it to someone once as follows:

Imagine the social norm was to constantly hop on one leg while going about your daily business - conversing, working, shopping. If you didn’t hop on one leg. everyone would shun you and life would be much harder. You wouldn’t really understand why everyone hopped on one leg, or why they seemed to find it so easy, but you’d learn over your life that things were easier if you just joined in with the hopping. You’d get used to doing it to fit in but it would never feel natural, and at the end of the day you’d get home, shut the front door, put your foot on the floor and breathe a sigh of relief because you weren’t consciously having to do something that felt exhausting and unnatural all the time.

That’s masking to me (I have autism and adhd)

That made me smile. I'd already had 2 dc diagnosed with ASD and my third was being assessed...I came away saying she won't make the benchmark, her responses were very normal, she's just a "mini-me" and a bit quirky.... She was the quickest to get a diagnosis! And yes I can see that they all get it from me and myside of the family...but that's normal for us!