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.

For some, it goes well beyond learning to accommodate social rules. It includes coping all day with things you find acutely uncomfortable, like noise and crowds, without appearing to over-react; trying to follow conversations or teaching using figurative language that you just don't understand; working out when someone is being sarcastic or ironic so you shouldn't take them literally. And that's before you take into condition other frequently co-morbid conditions like hypermobility that make the joints really painful.

I know how stressed I get if I have to try to work in, say, an extremely noisy environment. I can't imagine having hyper-sensitive hearing so that it feels like that all day every day. It must be incredibly hard.

@XDownwiththissortofthingX mild is such a crappy term. It just shouldn't be used as it's offensive to every day struggles of those with things like Asperger's such as myself

My life is extremely challenging for me because I'm navigating social situations and pre planned scripts, always constantly 'on the ball' thinking am I making enough eye contact? Etc etc. it's awful

But as you say, there needs to be a clear defined term for those with profound autism and neurodiverse doesn't touch the sides when it comes to my son and many like him

I guess he's few and far between, though. There are a lot more children being diagramed as autistic nowadays but they're seemingly more like me as a child/adult than my son. It's great there's more awareness and more adults (particularly women), are getting diagnosed - I'm happy they're reaching out for support

I do personally think though, that this has somehow watered down the word 'autism' and as a result, people don't appreciate just how severely disabled an autistic person can be anymore

Maybe I'm wrong though and other people find the opposite. I don't know

I'm not entering a severity discussion, but not all non verbal autistic people also have learning difficulties, nor do those who are still in nappies necessarily have low iqs. It can be a sensory issue around the sesnses that let you know you need the loo.

Its erroneous to suggest these are not sometimes caused by the autism itself. Thats the idea behind a spectrum disorder that it impacts in different ways.

But i on the topic of masking some non verbal autistics are also seen to mask stimmimg behaviour sometimes.

What is means to me, mother of autistic 12 year old -
DS was in mainstream school. He couldn't focus in class of 30, and was emotionally and academically behind so spent a lot of time outside the classroom with his 1:1. Time in the classroom was supported by his 1:1.
He didn't know how to be anyone other than himself. He was massively into dinosaurs and didn't understand that not everyone was. So he talked at them. Kids got annoyed after key stage 1 (ish) when they are all a bit random, and then he become the kid who spent breaktime walking alone around the edge of the playground. He did not have the social skills or ability to play tag, to do imaginative play when it wasn't his game (dinos) and he couldn't make himself fit in. So he retreated into himself.
Now, not growling or roaring, or rocking one chair, or fiddling with threads or any of his other self soothing behaviors is masking. Every day after school he would explode. Loud, aggressive, crying, screaming. All that held in "being himself" had to be let out.
Age 8 he moved to a specialist school for autistic children. He's in a class of 6. They all have their quirks. They have sensory rooms to retreat to. They have freedom to learn by following own interests as well as curriculum. They have walk breaks. They have staff to aid in their cooperative play. They have social skills lessons but it's games. The staff truly know each child on a individual level, and when DS comes home from school there is rarely any meltdown. Most days are a good day and overall every week is a good week. He has friends. He accepts his friends little quirks and obsessions and they accept his. They've learned mutual respect by being with others like them but different. My DS can tell me that behaviour is communication, when child x gets upsets and breaks something it's because they are struggling so we help them.
Anyway 9/10 days he comes home and he is fine. Settled. Happy. No meltdowns. I can't remember the last true meltdown. He isn't masking at school anymore as he is free to be himself. And being himself all day means he is happy, relaxed and not ready to pop when he gets home.

I have no idea if that explains masking or not.

To my NT kids I say we all mask to an extent. I hold important meetings by pretending to be a grown up, professional woman. When they have a school play they can pretend to be a confident actor (naturally shy and timid children). For NT people masking is a tool also, but for ND people they don't feel the need to do it all the time which must be truly exhausting, draining and detrimental to mental health.

Excuse typos and last sentence should be for ND people they do feel the need to mask all the time...

I think some people are getting mixed up with learning social cues and being able to use them automatically and masking.

This is how I mask as someone with ASD/ADHD:
I have to actively remember to use eye contact.
In conversations I'm never quite sure when it is my turn to speak so I am constantly thinking of that.
I zone out regularly, especially when people talk to me, so I find myself mirroring the expression of the person talking to me because I have no idea what they have said.
I don't understand small talk so I usually research questions when I'm in a situation with new people. If it's someone I know, they get the unmasked version of silence unless relevant.

I am sure there are more. But the only way I can express masking is it is like I learnt some rudimentary French and now I live in France. It's not natural to me and when I get home it is exhausting and usually means I don't want to socialise with friends/relatives because I've used up all my social battery life.

As someone who has Asperger’s who worked with children with the full spect of ASD, I totally agree. Having Asperger’s and Autism as 2 different diagnoses makes total sense and I don’t know why they changed it.

But on the topic of masking, everyone has to learn the social cues but for people with autism, it never becomes natural it’s something you have to think about all of the time.

For example at work I have to think about:

Can I get away with walking on my top toes right now? I definitely shouldn’t flap my hands because I’m excited right? If I swing on my chair for a bit, does it look like I’m being lazy and not working?

A group of people are going into town for lunch, is this an open invitation? I need to go into town, should I walk with them or go alone and risk bumping into them? Should I go later or earlier or will they think it’s weird that I didn’t go with them? If I do go with them can I break off and do what I need to do or do I need to stick with them?

Can I talk about my dog right now or have I already talked about him too much? This person has a dog so do they want to talk about our dogs?

Should I tell my colleague that their fan is annoyingly loud?

How do I bow out of a conversation about Harry Potter with another autistic person so that I don’t look weird?

Is this an appropriate time to ask a work question to a colleague or are they busy with their own work? If I ask someone else, will they be offended?

Have I remembered to ask everyone about their weekend? Do they really want to hear about my weekend or are they just being polite and I should just respond with, “Good, thanks”?

I have 2 people who make the most intense eye contact and they also have the bluest eyes I’ve ever seen. Do I try to match this? Are we just going to end up in a staring contest? How often do I lift my eyes up to look at them?

A colleague makes a joke about being overweight and they are, do I laugh? Surely that’s offensive? Do I tell them they’re not overweight? That’s a lie and they’ll know I’m being insincere.

I made a comment and no one responded. Did they not hear? Should I say it again? Did they think it was a weird thing to say so they ignored it?

Can I please talk about my dog now?

It was explained to me that masking is essentially doing something using the cognitive elements of your brain rather than it being instinctive to you. So you’re thinking about what you’re doing rather than going ahead and doing it.

Everyone including NT mask, so think when you hear someone put on a telephone voice or a shop assistant that is polite and professional despite dealing with an arsehole. That is also masking.

It is doing something that would not necessarily be your natural response to a situation to ensure your response is appropriate. Because Autistic people and people with ADHD use different processes to try to fit in, it’s considered masking because it’s not their natural response. It can however become habitual and appear natural.

… or maybe you’re Autistic too? It runs in families.

No not everybody has to consciously do all those things.

Have I remembered to ask everyone about their weekend? Do they really want to hear about my weekend or are they just being polite and I should just respond with, “Good, thanks”?

This has made me laugh, because it reminded me of something I was going to say when a previous poster was asking about 'adjustments'.

It sounds glib, but one of the things I ended up requesting was that my colleagues stopped trying to engage me in idle chit-chat because it used to completely nonplus me, and frequently they got really offended by my responses and/or total lack of enthusiasm for it.

"Did you see Strictly on Saturday night?"

"I don't watch TV, and Strictly is brain dead shite targeted at mor..... Oh...."

😐

So much this!

And there is definitely a 'she brought it on herself' perception regarding things like this, because other people would understand not to take things so literally. Because of that, ND girls and women don't necessarily feel about to talk about these things. The response is usually not exactly sympathetic.

Yes, but that doesn't mean your autism is considered 'mild' because your autism impacts on your life differently to how the next person's affects theirs.

I agree, which is why I purposely didn’t use the term “mild”. Difference in presentation doesn’t mean my child’s life is easier than another’s, it’s just different. My DS has a much easier time in school than my DD because his presentation is less socially awkward and he’s more able to mask, but it takes its toll in other spaces. Many people would suggest his autism is “mild” but he expends a lot of energy trying to fit social norms, can be very anxious and struggles in areas that are much less apparent to the general public.

One of the challenges for me as a mum is that my kids present in completely different ways and need completely different approaches and supports, usually at the same time. The impact on each of them isn’t what I’d consider mild.

YABU very unreasonable, suggesting people who are neurodiversity don't learn from social mistakes!

From my experience masking is trying to mimic those around you and putting a lot of energy into regulating your emotions which is why when you get to your safe space you can relax which then results in all the tension and pent up emotions rising to the surface which can then lead to a meltdown, shutting down or extreme fatigue and weepiness.

Oh I also forgot to mention putting a lot of effort into trying to remember and implement appropriate social cues, it’s exhausting trying to constantly fight with yourself not to interrupt someone, wait your turn, control your volume, your hand motions, don’t move around too much, listen, pay attention, don’t go off track etc

Also applies to asd

Just musing and wondering if modern life is more difficult for autistic people because now it’s all about individuals?
Eg when I was a child in the 1960’s school was very strict with lots of rules and regulations; you were expected to be quiet and do what the teacher said, not express yourself.
We didn’t have to worry about social situations, going out to new places because you didn’t really go anywhere other than school home and to visit grandma.
Food was set meals on set days, so always a roast on Sunday so you knew what to expect.
Would this have been easier with a clearly laid down schedule?

That would be my ex. It took years but I’ve convinced my ex that he has ASD traits (it ‘helps’ that one of our children is his personality twin and has been diagnosed). But he still hasn’t gone through the process for his own diagnosis, and will definitely have a massive burnout in the next few years.

For me masking my ADHD is hiding my true personality so I don't get shamed for being 'dramatic' or 'loud' or told to 'calm down' when I'm passionate about something.

It's purposefully turning the volume down on myself so others don't shame me.

I masked so well I didn't even realise I was doing it and I wasn't diagnosed until my 30s. I copied girls at school all the time and obsessively read fiction and watched sitcoms to learn the social cues and skills I needed. I still mirror people's body language etc because it helps me get through the day.

I still mask because if I didn't I wouldn't hold down a full time job or cope with the day-to-day sensory hell. I'm constantly exhausted and burned oug. When I'm tired it's harder to mask and I have to put more energy into not being blunt and literal, because people interpret that as rude.

Thankfully my DP doesn't think I'm rude when I don't ask him about his day in the evening and just go straight to my special interests. He knows I don't do small talk because it's a waste of time.

I relate to this except I don't and can't be bothered 'to mask'

Apparently I'm blunt, can be rude, don't tolerate idiots, and I've been eccentric for as long as I've been aware of my impact upon others. As a teenager I was very popular, rebellious, argumentative, loved a good debate, wore slightly off beat clothes and rather than gossip I learned to box. Small talk is time wasting, boring and confusing. But I've learned to parrot a few phrases, because it seems to make people feel you care.

I never understood the rules, well aware of them but since they make no sense 🤷 not wanting to blindly follow. In a sense it's a virtue to use philosophy and reason to inform conduct and behaviour, as opposed to the touchy feely subjective mash up that seems to guide most people. But you see, I do care and I have bags of empathy and I do understand the reasons behind social adaptability and links with survival in a species that is interdependent, no man an island.

I have no diagnosis. And yet Im fully empathetic with those who feel they have to mask, because its exhausting to go against one's own instinct, and why is it that we feel somehow that the social norms of the NT world are somehow better?

I have no diagnosis. And yet Im fully empathetic with those who feel they have to mask, because its exhausting to go against one's own instinct, and why is it that we feel somehow that the social norms of the NT world are somehow better?

In your case, you just sound like a non-conformer to me (think of the couple in 'We Will Rock You').

There are elements of your post I resonate with - I can't be arsed with the rules and I think being normal sucks - especially for women.

I don't get the connection with being ND though - to me, it is just being 'myself' and is about personality and free choices. I don't want to fit in because 'in' sucks.

Hmm... I'm not sure about that.

I got yelled at because I wrote all 'e' as Capital 'E' because I couldn't master the lower case version, then years later I got strips torn off me and sent to the headmaster's office by a Home Economics teacher because I couldn't knit without tensing up and becoming flustered to the point where the rows would get progressively shorter. The same teacher had me belted because the sewing machines I was expected to use triggered a sensory overload and I'd frequently break the needles.

There was absolutely no understanding that some children need more patience and understanding, or that perhaps there might be some reason other than 'spite/naughtiness/laziness' behind their inability to perform certain tasks to the standard of their peers.

School was hellish for me, it made me utterly miserable, and by the time I was 15 I just use to go into registration and then leave for the day. I couldn't have cared less about the consequences, and my education suffered enormously as a result.

For people like DS who can (at great effort and personal cost) superficially live pretty "normally" as in function through mainstream education and most social settings, I suspect the pace of modern life is a clincher in reaching an assessment threshold of being autistic.

In a smaller world of small shops with familar shopkeepers following a script, less music, softer lighting, smaller classes, fewer expectations, a lot of those sensory overwhelms would be reduced.
Then again, natural fibres would have irriated him far more- clothes would have been more difficult.
He'd have struggled with his dyslexia/ dyspraxia in the education system.

I think there are a lot of older undiagnosed "high functioning" males in the family and they coped through strict schools and found comfortable niches in specialist fields, or in one elderly relative, a content solitary life maintaining the small family farm. The younger generation are getting diagnosed when they are struggling.

I'm not going to pretend it was a golden era, and absolutely not if you were recognised as being "mentally handicaped" as one of my relatives was in the 1960s. (Fortunately he was raised in the family and the offer of being sent to an institution, not taken up until he moved into community based residential care in adulthood that was a far kinder environment.) But there are definitely a lot of additional social and sensory pressures added to people in the past 20, 30 years that will tip the balance of coping with society's expectations for many people.

I have autism/Asperger’s, and I don’t understand masking either. I was diagnosed back in the 90s when I was 7, and haven’t really heard about masking until a few years ago. I’ve tried to understand it, but I honestly can’t get my head around it.