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.

But there are levels given on diagnosis though so although they may all fit the diagnosis their level of need and severity of symptoms can be very different.

Personally I have no issue with people using the term mild. One size doesn't fit all.

Me too, but in my case it's shyness and not autism. I also find one-to-one interaction more difficult than groups, which is funny because all the advice for shy people is to interact in smaller groups!

Levels indicate need not functioning levels or how ‘mild’ the autism is. Not that all diagnostic systems uses levels, because it’s really not reflective of autism in general. I have one child who would have been diagnosed ‘Asperger’s’ a few years ago, but his needs have severely increased over the last couple of years where in some ways he’s higher needs than his severely autistic/GDD brother. It’s not recognised as much because he’s verbal and seemingly has receptiveness in communication. Too many people think that this type of ASD means a person can be ‘moulded into the normative’ when in fact those who are wrongly seen as ‘high functioning’ are the ones more prone to MH issues or lacking expected functionality in the future.

"Only if she was at home, largely unable to engage with professionals but expressing a wish to attend school and be "normal". "

This scares me a bit. I keep getting ADHD videos on social media. I'm pretty sure I haven't got it, but sometimes they say things like 'if you act out pretend/potential arguments you have ADHD'. Please tell me other people do this! I even did it in public a couple of weeks ago - I was angry and stressed at the time and people just thought I was angry about something else.

Wrong quote above, it was supposed to be the person who said that 'everyone is like that' actually finding out they were also neurodivergent!

Both myself and Ds have been diagnosed in the last 4 years. One by the NHS, the other privately (the private diagnosis was far more detailed) and neither diagnosis came with levels. Both said ASD.

@Gwenhwyfar if it’s simply just that it’s very unlikely you have adhd. It’s when more and more things (usually things you’ve been berated for your whole life and you just don’t understand where you’re going wrong) start clicking. Do any of the following also click for you?

The more you try to concentrate the more you zone out.

Not realising you’ve zoned out and realise you’ve missed a whole time period.

Having less ability to sit through films or read a book. Any form of entertainment either has to be a ‘hyper focus’ (something that you spend far too much time engaging in) or something that takes seconds (hello TikTok addiction).

Getting really angry when someone interrupts you when actually concentrating highly on something.

Object displacement - losing keys and glasses every day. Having no memory of putting them down despite knowing every damn day you need to put them somewhere safe/in routined spaces. Literally putting something down and not seeing it again for months/ever again.

Doom piling things on to a space, think tidying is shoving crap into a cupboard. Also hoarding.

Unable to function unless given a deadline. Always in trouble in school for not doing homework. Being shouted at for not looking at the homework book (which ceased to exist the moment you put it in your bag to your mind). This carries on into adulthood - major tasks don’t get done unless there is is a very specific reason to do so (can’t tidy fully unless someone is visiting, wont put petrol in the car unless is literally chugging alone on fumes, can’t start a project until it’s the very last second and the panic/adrenaline kicks in).

Getting obsessed with things but instantly dropping it as soon as you’ve had a ‘high’. For example ‘I want an iPad, I will use the iPad for this idea I have, it will pay itself off in the long term’. By the iPad, love the anticipation of getting the box, opening it, use it twice, hide it away forever because the dopamine hit ran out and now you have guilt/shame but no motivation to carry on the idea.

And of course, the completely over wired brain that doesn’t shut up day and night. Like being stood in a small room with 20 people all talking at you/over each other, reminding you to do this and that, repeating random shit, telling you to google everything, having great ideas, telling you off for being lazy/useless, where are your keys/glasses now, the bin needs go out, oh 5 more minutes on TikTok, did I order that item I needed, I haven’t sent off those emails I promised, shit how has 3 hours passed in 20 minutes….

If that’s you on top of the self arguments then you might want to consider an adhd referral…

Thanks Gerrataere. I know people with ADHD and am pretty sure I don't have it. I was actually hoping someone else would say they have these pretend/prepare arguments though!

They do. No one has been diagnosed ND for simply playing out arguments in their mind. It’s just a form of disassociation, we all daydream it’s just when it starts affecting your day to day life there’s an issue.

I also find masking a very confusing term. If we went by the core traditional definition of autism from 20+ years ago, then masking would be a type of lying or changing your self-presentation which should be very hard for autistic people to do.

now that we have a much wider understanding of autism, the idea of masking is much more prevalent. But it is also linked to social anxiety - to worrying about how other people see you and whether they are judging you etc.

Things like eye contact - there really are NO rules. There are a bunch of books that tell you rules but they are WRONG. Some people make eye contact 80% of the time. Others make eye contact 20% of the time. Both are perfectly effective at communication. the problems come when people think that there is a rule and that they are getting it wrong and start getting anxious about it.

So if everyone was a bit more chilled about the social rules and could find ways to help reduce people's anxiety about social rules, that would be great.

Looks around the room for a spy cam...

It's the hunting around the house for keys that finishes me off... when they're in my own bloody hand.

Anyway I need to go, I promised myself I'd do yoga at 9 and I really want to do it.

It sounds like you’ve had a really hard time growing up, but also this is the flip-side of ‘I don’t understand the need to tell white lies’ or ‘I say things in a horribly direct way’ in your case. Many of these comments will be true but they aren’t kind to say to anyone. I make a lot of accommodations for the autistic people in my family and in my classroom. I gently remind about personal space when needed and occasionally have to ask for very loud verbal or physical stims to be stopped for the sake of others in the class being able to learn (and me being able to function as a noise-sensitive person myself!) but otherwise I always expect kindness and tolerance from my other students not masking by the student. However, I have a real issue with the ‘honesty’ thing. We cannot have a situation where one child is sanctioned for being unkind to another for liking things that are different (‘it’s not normal that you play with dolls still’ - which is true but unkind) but don’t sanction another child for saying something unkind because they have an instinct for honesty (‘you have a big nose and it makes you look strange’). I think this is one ‘masking’ social rule that has to be non-negotiable. Most NT can learn to accommodate difference in social interactions and absolutely should accept that nor making

I swore I’d go to the gym today, I’m still in my nighty. I’ve said I’d drop the kids at their dads for 1pm, whatever 1pm is in the real world 😂.

Oops - I pressed to post by accident without finishing.

meant to finish with:

NT shouldn’t have to tolerate ‘honesty’ that is unkind because it’s unnecessary and makes them feel sad and unhappy.

Well yes I did say need. But less need is exactly that. Level one does not require the same level of support so I think it's understandable that the term mild is used in some cases.

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.

I understand why they got rid of the Asperger's term but it really was quite helpful in many ways. Dc still use it and also high functioning and mild. I often think lumping it together under one diagnosis does a disservice to those who have greater needs. Many others agree as I'm aware of the movement to change this the next time round.

You’ve explained this perfectly and really simply.

Masking is incredibly exhausting. Myself and ds often need a day at home to decompress after a full on day with friends or relatives.

I have generally stopped being so direct and ‘honest’ these days. I have a very very small friendship group that I feel comfortable enough to let down my guard with, but I’m always careful about what I say and try and play in my mind what it will sound like to others. Some days I do slip up, especially on social media platforms where there is less need to care about the impact of the words used. I personally don’t often care about what I say if I believe it to be true but I’m not an arsehole in general, I don’t want to actively be crass or hurtful. But some days I fail in that. I wouldn’t now say ‘god that’s crap/boring/stupid , I don’t like it so you shouldn’t either’ but I definitely lacked a filter for far too long. However I was severely punished as a child for getting things wrong so actively tried to just not say anything at all to avoid awful consequences. I pretty much completely shut down as a teenager and ended up having a bit of a breakdown.

This is is, exactly. Further, to my knowledge, the levels attached to DSM V diagnoses were designed to assist with insurance requirements in the US (ie to indicate the level of insurance required to support the individual).

Of course, the inherent problem with assigning "mild" or "low/high functioning" labels to someone is that autistic presentation isn't static - which manifests in two ways. First is that...I can have days when I'm totally able to mask and present as NT to the outside world, but then I can have days (and even weeks) where I'm unable to even handle the basics of life and sometimes can't even speak.

Second is more long-term. It's no accident that lots of people are being diagnosed in their late-30s and 40s, if my experience is anything to go by (and I've spoken to lots who've had a similar experience). Basically, the strain of masking in the modern world, with all of its expectations and consequences for being "abnormal", takes its toll over the years and after a few decades the cracks in the mask begin to appear. Our behaviour starts to revert, we start missing cues, folk start asking if we're OK, we start getting excluded socially, it's harder to communicate at work but it's harder to get new jobs even though we've previously had high offer rates when we've tried previously, people start suggesting we ought to seek therapy...and eventually either somebody will suggest that we might be autistic or the YouTube algorithm will figure it out before we do and start chucking autism-related videos at us until we catch on.

And then...we have the "Ohhhhh....I thought I was the only one!" moment when we meet other autistic people.

And yes, this can happen much earlier in life too - as an extreme example, autistic children who are considered non-verbal and unlikely to ever live unsupported can suddenly begin to talk with no external influence and a couple of years later they've gone from "will never have a normal life" to being able to pass for something resembling society's normal expectations without any obvious changes in their environment.

NOTE: I don't want to give false hope to any parents of non-speaking autistic children out there...I've met a few people who confounded their doctors like that as children, but they're rare.

But with ASD, needs isn’t a general, overarching term. One person may have high needs in many areas that another person with autism can manage just fine. But they themselves may have high needs in another area that someone who seems ‘more’ high needs may not struggle with. Does that make sense?

I think they key difference comes down to understanding. Comparing someone who is more ‘Asperger’s’ in presentation to someone who has global delays/learning disabilities with their autism does make it seem like one is more severe than the other. Because the person presenting as the former has a level of communication that wouldn’t make autism seem so severe. But the condition itself is the same for everyone who has it, it just presents differently and with additional needs for some.

It confuses me too because I think pretty much everyone who isn't super confident and outgoing masks to some extent. Masks unhappiness, fakes confidence, questions how they're coming across and looks to other for examples of how to act, then goes home and dwells on whether they're managed to fit and be excepted.
I've worked with some severely autistic adults who are unable to mask, it's just not a thing for them as they're so disabled they're unaware of others around them.
I think there's a really fine line between NT and ND these days.

Isn't that just what we do everyday? We all respond differently to different people and scenarios.

Yeah I also find the idea of "masking" confusing. I've learnt to follow social rules that make no sense to me and constantly monitor myself to make sure I'm doing it correctly.

Doesn't everyone? Maybe to different degrees, but everyone changes their behaviour and monitors it to be socially acceptable every day. It's v tiring, but we all do it

I have two neurodiverse sons. One did not (or could not) mask or camouflage. His speech was impaired and his attempts at being social were definitely noticeably atypical. His difficulties were noticed at the age of 2 and a formal diagnosis was made at 7, even though he received 1:1 support since nursery.

My youngest, however, seemed to be a 'typical' child. He seemed to have friends. That is, he talked a lot about one friend, and went to play at the friend's house. He did not appear to have the difficulties his brother had. Any behavioural difficulties or learning difficulties were excused by school, and by us (as parents) as attributable to the context of growing up with a brother who had, at times, very challenging behaviour.

My youngest became unable to attend school from the start of Y9 due to extreme anxiety. He now has a cluster of MH difficulties and we are awaiting formal diagnosis of ASD.

When we look back, it was obvious that our youngest was not coping. He played alongside the others, obsessed about his friend, until the friend became overwhelmed, and his ritualistic behaviour at home should have also been a warning to us.

My husband was diagnosed with ASD at the age of 52. He was brought up in the age of normalisation. His mother' ordered' him to stop 'flapping' his hands; and when he was older, he just joined in with 'the lads' drinking and messing about, because that was what many young men did in those days.

He married and tried his best to be a 'family man'. However, the demands of coping with two sons, one obviously SEN, was too much. He could not mask the empathy or understanding he needed, because he had never acknowledged his own needs. As he aged, it was impossible to mask anymore. His MH difficulties took over. He is now in a care home.

We all mask (we call it acting out roles). However, the masking of neurodiversity is not a positive coping mechanism for neurodiverse people. In my family, it has led to serious mental health difficulties, and stopped the individuals from developing strategies that help them to as neurodiverse people, and through utilising their strengths.

Comparing someone who is more ‘Asperger’s’ in presentation to someone who has global delays/learning disabilities with their autism does make it seem like one is more severe than the other.

Thats assuming that lack of verbal communication, poor mobility, lack of toileting etc are due to an additional condition (GDD etc) rather than being part and parcel of autism for them.

My understanding is that all of these things can be purely related to autism, with no other diagnosis present. In which case I’d argue the individual who is unlikely to be able to live independently is more significantly impacted than someone who is broadly able to function day by day. Not to say that person isn’t significantly impacted by autism (I know, I see it in my kids), but I wouldn’t pretend they have the same level of impairment as my friends child who has no diagnosis other than autism but has no verbal communication and is will never live independently.

Excellent way of describing it. Masking either has positive or negative outcomes. Good way of viewing it