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.

Dd8 awaiting diagnosis will mask, she tries to fit in doing things she doesn't want todo because everyone does it, even little things like using hand drier in public loo she hates them they hurt her ears but she will push through that an use them as quickly as possible because everyone else does even tho I tell her we don't have too. Altho as she's getting older it is getting harder for her to mask.

My son is severely autistic. He can't mask. I don't know if he knows what it would even mean, but he sure as hell doesn't care!

I have Asperger's (it's not diagnosed that way anymore), and I mask, a lot.

Unpopular opinion but I like masking and yes I want to present as 'typical' to the world, thanks.

I agree with this.

Hi @Imdrivinginmygetawaycar

Yes, I’m a teacher and about to apply for EdPsych doctorate.

Whenever I’ve had to write a school-based account of a girl’s behaviour for an ASD assessment I look for sensory and social clues. So things like:

• hates loud noises, general classroom chatter, soft noises, any noises, finds auditory discrimination tough in a classroom, has perfect pitch, issues with showers/clothes

• Finds it tough to fit in, has limited affect, strange voice perhaps, takes instructions literally, very slow and deliberate, one intense friendship or on the edge of social group, people-pleasing, school anxiety

There are loads more but perhaps teachers might consider these things before writing a school account.

I know it's not a one size fits all situation but can I ask about accommodations? Lots of posts mention making accommodations for people with ND but they never really say what they mean by this. I think more people would be open to the idea if they knew what they were being asked to do/ not to do

Masking doesn't mean covering up a meltdown. It means consciously adopting behaviours that fit better in the NT world. Prolonged masking can lead to meltdowns as it is so overwhelmingly exhausting.
It can be simple things like suppressing a stim when out in public. Or using social rules/conventions in interactions that don't come naturally but ease relationship

They're refused so far 🙄.

But on another level I'd so love to ask you All The Questions! (I wont) I did a second degree in psych so I could train as an Ed psych but this after having kids we moved and it wasn't going to be feasible.

I do autism education though so it scratches my itch but I really did want to be an ed psych...

Exactly. I remember when I was 14 a friend of mine pointing out I made no eye contact. To this day I find myself hyper fixated on getting the ‘right’ balance with eye contact especially if it’s someone I don’t know very well, because I don’t want to have too much /too little.

One thing I think is that my Adhd brain is always going fast.
So it's probably hard to 'chat' as whilst I am making conversation, my brain is as usual thinking madly, running ahead with scenarios, info, so also looking interested in the other person, listening to what they say and making the correct expressions is not easy because by then my brain is 3 steps ahead.
Masking is a funny word imv as it suggests a flat expression when in fact you are doing all the things you think are expected of you, eg raising your eyebrows in suprise at their comment, smiling empathetically etc. The opposite.

I wasn't even aware I was masking at work and in social situations until I was in my early 40s. I kept getting burn out from working and found it impossible to keep up with everything that other people could do as part if daily life as I just felt completely exhausted all the time. It made me ill.

Now I have adjusted my expectations of myself and try not to do too many things that mean I have to mask. I also allow myself to unmask around people who are safe to be around.

Let me tell you what happens when I end up masking frequently without a chance to recharge my social batteries. So on Friday DD (also autistic) was invited to an End Of Term party at a friend's house (and I stayed and talked to the other parents there for several hours), I then had a 3 hour hair dressers appointment (social chit chat) on Saturday, a rare kids party invite for DD Sunday (again I have to stay which means talking to people) and a playdate yesterday (slightly better as the parent knows I'm ND and I'm in safe-ish company).

All four involved me having to mask to a certain extent (making eye contact, small talk and focusing on the topic of the conversation, clues on when to speak, what to say, not interrupt, talk too loud, too much or too intensely and so on. Basically avoid looking and acting too weird so DD gets invited to these things again) and today I feel totally wiped out and fluey. I am not working at the moment but if I did I'd be off sick. Such is the extent of the exhaustion that follows masking, for me. I wouldn't normally have so many things on so am aware that I sort of knew it was too much but it seemed unavailable.

Just typing that was exhausting 😴

Sorry I meant to say you are right @user1471530109 that masking is having to work really hard to fit in and is exhausting.

It's a minefield and I think 'ND' should not mean things like severe ASD/non verbal etc types

For example, I am a capable, literate woman who has a degree and family. My son has the same diagnosis nowadays since my Asperger's would just be autism that he has yet he will never be out of nappies, smears, can't speak a word and is a danger to himself and other people if not supervised 24/7. His care team for respite now need 2-1 for care.

Accommodations would mean a whole host of things for him. For me, maybe more time to process a request? So world apart.

My eldest son masks. He knows he has autism. He knows he is different. He can see how others behave and he tries to be like them. That means not stimming. Watching what he says and how he acts. Trying to not show how loud or sudden noises distress him etc etc.
All to try to fit in to an NT world that does not accept him as himself.

The stress that causes him is enormous. He needs to stim. He needs his routines. He needs to cover his ears at an unexpected noise.

But he knows what other people say and do if he does.

So he comes home overwhelmed, exhausted and very upset and here he is safe to be himself so he stims and talks about his favourite topics and yes he shows the distress he's been trying desperately to hide all day.

This is why so many people with autism end up with mental health problems.

NT inability to accept people who are different is what is causing these problems.

That said, not every autistic person can mask. My younger son can't. He stims and shouts and lashes out because the world is pure torture for him day in day out. He cannot filter out any sensory input. Imagine blinding lights, loud noises, scratchy clothing, horrible smells and overwhelming taste and texture your entire life. How well could you function if that was your reality?

I know some people don’t like it when people say “but isn’t that what we all do?” and think it’s like saying “we ll have autism” - but I don’t think asking this question is bad. It may mean you are realising you also “mask” in an ND way, but it could be just describing the way most people do adjust their behaviour to the situation and have for example a work “self” and a different persona with friends or when relaxing. That’s normal, but IME the difference with masking is that it totally exhausts you and you’re very stressed afterwards.

I wonder about it too as I do have ASD and ADHD in my family, my DC have some traits and I sometimes think I do, but then lots of things don’t match. Being a massive introvert also involves feeling exhausted after social interaction, but I don’t feel like I copy other people or “pretend to be normal”, it’s more like I’m just a bit shy, crap at small talk but sometimes really hit it off with someone and can chat away happily and easily (including taking turns etc).

There’s also broad autism phenotype where you wouldn’t get a diagnosis as such but have some tendencies, often occurring in family members of people with ASD. So I think it’s a normal process to wonder “does everyone do this, or is there something unusual about how I’m doing it?” And there can be grey areas and misdiagnosis.

@Imdrivinginmygetawaycar

Feel free to ask all the questions, would be interested to hear about your job too!

I’m sorry that school are being unhelpful, they need to read up on autism in girls.

I have had difficulty making friends all my 50+years despite all my masking - I honestly don't know what I'm doing wrong but others detect something which makes them avoid me.
So when others say 'doesn't everyone do this' well if you have lots of friends and enjoy socialising - you're probably not doing it to nearly the same extent as a ND.

my adhd brain is never quiet - I’ll be thinking about a conversation I had a week ago, thinking about what I might have done or said differently, while two different songs or a movie scene are playing on a loop in my head (right now it’s the courtroom scene from legally blonde). I’ll possibly be thinking about what I’ll have for dinner at the same time. I can’t stop it so I have to concentrate extra hard on normal conversations so as not to appear a total weirdo. Couple that with all the other adhd traits - it’s exhausting.

so it’s like basic French in a French speaking country but the little bit of Spanish you know is going round in your head too and it wants to come out but you know that’s inappropriate. You try and stop the Spanish but then that means you’re not paying attention to the native French speaker in front of you. Then they notice that you’re acting strangely and that’s super stressful to someone who is masking because it means you failed.

The difference is that we all need to learn social cues and behaviour but once learnt it's easy for an NT person to follow them (and pick up new ones).

Both my DSes have ADHD. They were at the same school from age 3 to 11 (DS1) and 8 (DS2). It's a VERY strict religious school, where the DC are graded out of 10 every week for their behaviour and it impacts their overall grades.

My DSes always had almost perfect behaviour marks. We had zero complaints from school. DS1 had communication difficulties (with peers and teachers) but that was just dismissed as being shy (or in one notable case, insolent. Until I pointed out to the teacher that he has difficulty chatting to his friends too and she realised it was true and backed off).

At home however it was completely different. The coke bottle analogy totally applies to my DC.

An extreme example of masking: my DS1 was 10. Doing reasonably well at school. Had 2 good friends and was included in a larger crowd too. Excellent weekly behaviour grades. In the space of 4 months he tried to run away from home twice ("I don't deserve a nice home I deserve to sleep in the street"), tried to cut his wrists with a knife 3 times, tried to strangle himself in the playground (another mum told me, supervising staff hadn't noticed) and tried to jump out of 3rd floor flat window 2 times.

He just wanted the pain inside to stop and he felt like he didn't fit in this world despite all his efforts. And my god did he make a lot of effort. It was heartbreaking.

[Update 2 years later: we've moved a long way away and he goesto a much more relaxed school, he's taking ADHD meds, and is absolutely loving life. He's top of his class (they rank the kids here) and we no longer have the huge angry outbursts because the pressure is off].

That's pretty much the analogy I used to then 9yo DS driving home from him being diagnosed; I wasn't expecting such a definitive diagnosis to be made so "easily" and I was reeling at the time, but he needed to know what the appointment was about and what it meant.

DH has an automatic. I drive a manual which I'm well used to. I've driven the same make for 10+ years because it fits my ergonomics. When I get into DH's car, I'm still driving and doing all the observing and reacting required for driving, but the controls aren't in the same place. I've got a dialogue chuntering through my head of "don't use my left side" and my left hand flaps for non-existant gears when I change speed, the controls feel odd and clunky, my right quad burns because of the awkward angle of the accelerator etc. I'm still driving but there's more mental effort and I get physically tired much quicker.
That's what it must be like for DS getting through most days, manually vetting most interactions, battling sensory input.

Another analogy is like every day being like an all-day job interview. Every one puts on their best, polished front for an interview and it can be done for short phases, but to do it all the time, you'd lose your sense of self, you'd be exhausted when you get in, you'd begin to dread the day ahead when you get up each morning.

And if you're masking with autism, it's not just manually filtering your way through unwritten laws of social communucation, you're probably also battling physical urges to stim, to hide away, manage body language, and brain-mashing sensory input like that clock on the wall that ticks out of synch with your heart beat, or the faint hum that no one else seems to hear, or the way that someone's nostrils whistle when they breathe.

It was DS's regular explosions the moment of stepping out of the school doors when he could let the mask drop, once cuminating in a 4 hour meltdown that lead us to investigate/ diagnose. He is exemplary at school, but at great personal cost. He can't do anything other than zone out for at least two hours after school. Now at secondary, I judge from his head position as he walks up the road to the car if it's a radio off, and wait in silence until he can talk day.

We all have a best, polished front, but with autism it's having to be in that mode pretty much constantly to socially survive. You may not know that your doing it, but the extent of it impairs your ability to function in wider life. We hear a lot about meltdown, but shut down is another significant trait where you just can't process anything else.

OP, imagine always being the one who doesn't get the joke. After a while people call you sour or humourless, say you are no fun to be with, avoid you, exclude you.

To avoid this, you laugh, even though you have no idea why it is funny.

It's exhausting and stressful. I've been doing it for 50 years. I can't wait to retire so I don't have to cope with colleagues any more.

Oh lord reading this I let out a big sigh like I felt it I've never been able to explain it before but you have said it perfectly i was diagnosed with ADHD and ODD at 15 I didn't understand it at young and never pretend to be honest I still don't fully understand it now I was never intelligent or academically smart i never fit in at school never had friends and never understood why as I got older the behaviour I have now is copied from others around me when I get home and can be me I'm a completely different person I find it hard to make friends now because my behaviour changes so much like the more I know you the more my barrier comes down and my I don't know weirdness I guess comes out I'm not badly behaved or nasty or anything I'm just extremely hyper can be "abit much" and i didn't realise we weren't all like that untill I was older sorry for rambling this is what I do thanks for writing this though it's been an eye opener sucks I'm 26 this year and only really now am I learning more about it but as my son is going through the process now of school and we are both finding it quite difficult I'm trying not to rub off on him. Xx

I've done this - started laughing so I don't look like the odd one out who didn't get the joke

Sadly, quite a few people have noticed and then said something like 'Why are you laughing? Go on then, what is it that's funny then?'

humiliating

So imagine you go to a posh restaurant for the first time. It's a really fancy, old fashioned place. The friend your with has been before, but you've never been and it's well out your comfort zone. So when you don't understand which fork to use, or how to act, you look to your friend or diners around you and copy what they do. You don't know why it's that fork for fish, or that spoon for soup. But that's what everyone else is doing so you do the same.

You're so aware of making a mistake and embarrassing yourself. But still trying to have a nice night talking with your friends enjoying the food etc. You're in a smart dress and it's not that comfortable, you're not in your comfort zone at all and desperately don't want people around you to know you don't belong in a posh place like this. By the time you're finished you'd be exhausted right? Ready to get into comfortable clothes and just space out watching shit TV.

That's masking. Only it's everyday stuff all the time rather than the odd evening.

Ok, so my DD was diagnosed at 9, we started the process at 7. When we approached the school about it, they said she "seemed" fine. And she did, because school has a very clear set of "rules" she can follow - take those rules away, or change them, and she couldn't cope. Once I pointed this out, they began to notice that she actually was only really "fine" if everything followed its normal, predictable pattern.

Another example - she's never been a stereotypical "girly girl" and preferred cars and trains to dolls and dressing up. Started nursery and came home after the first day and told me she liked pink and princesses now "because girls have to." For about the next year and a half she wore princess dresses and played with dolls - she was following the "rules" as set down by her peers.

If you do something that makes her smile, she has a lovely, natural smile. Tell her to smile, and she'll physically put her hand to her mouth and push the corners of her mouth up. She's following the "rules" of what a smile is.

Since her diagnosis, she's gained more confidence to just be who she is, although she's definitely happier and more secure with a predictable routine.

A good example I saw of this was to imagine, as a NT person, that the "rules" we know almost instinctively for social interaction were suddenly flipped. Don't look people in the eye, that's rude. Don't ask people about their interests, that's nosy - tell them all about yours instead. Don't show your emotions on your face, instead show how you're feeling by stimming and making noises.

You'd probably eventually get used to it, and learn to "operate", but would it ever feel natural and normal to you? Quite probably not.

Anyway that's just my take on it as a (probably) NT mum to a autistic kid. I don't claim to be any sort of expert, I just try my best to support her as best I can.

No other people have an understanding and are able to just pick up and follow them without much thought. For autistic people it is a case of mimicking others and saying doing things that don’t come naturally without really understanding why. Often this comes with rehearsing as well. It is completely exhausting and often get things wrong. Other things suffer because all the mental load is going into getting the very basics right that others don’t even think about.