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 blurt out random words whenever I have an uncomfortable thought, memory or strong feeling. I'm aware it's weird af so save it for when I'm alone in my car driving home instead of the work place. Id call this "masking"

Pffft. As DP's always saying to me, better to be out-and-proud than stressing over whether people are going to notice.

Turns out that's very good advice - despite my reservations, I'm a lot less stressed and exhausted these days.

You don't understand social cues, you just copy them and do what others do in order to fit in.

Eventually there is some learning like "when I do this, other people do this so I'm going to do this instead" but there is no intrinsic understanding.

I think it’s trauma from childhood. I knew I was ‘weird’ but I was horribly bullied for it, not least from my own mother (incidentally the only person to question if I was autistic as a child but never took me to be assessed, just used it as an insult). Then I just convinced myself I was just smarter/more mature than my peers. I read something a couple of years ago that resonated with me - ‘people with ASD traits think they’re above their teen peers, but in fact their peers are behaving as they should do for their age and those with ASD don’t realise they’re lacking social development skills’. I have two children with ASD but their dad shows far more ‘obvious’ traits in my mind, so it’s been easier to think ‘ah the autism must be inherited from his side, adhd from me’. Now I think it’s a double dose of ASD and poor kids never stood a chance 😂

I’ve read it. I’m not sure there’s anything that can defend the level of eugenics involved in Asperger’s research - if you can call it that, given the sample size of four boys.

”Useful shorthand” isn’t enough, for me, to continue to use the name of someone who “ willingly became a cog in the Nazi killing machine, referring children both directly and indirectly to Am Spiegelgrund. This was the clinic where children who were deemed genetically incapable of social conformity, or who had physical or psychological ‘defects’ that were deemed undesirable and assumed to be genetically determined, were killed through starvation and lethal injections, and whose deaths were recorded as due to pneumonia.”

In return, may I suggest that Edith Sheffer’s book, Asperger’s Children: The origins of autism in Nazi Vienna, is worth a read. You might find yourself less comfortable using the name of someone who may very well have willingly sent me and all of those girls you studied to their deaths.

I definitely agree with others that it's about forcing yourself to fit it and using a lot of energy to do so. It's generally a conscious behaviour that isn't maintained in your safe spaces (like at home).

It's effectively acting, you learn how you should behave even if it makes no sense and so act accordingly. "Masking" your true self.

I am undergoing assessment for ADHD and ASD and score highly in all assessments for both. I have sensory, routine and social issues from the expected ASD.

But you wouldn't know it without me telling you. Particularly the social side.

But that's because I've watched hundreds of hours of documentaries on brain development, child development and social development. I've read booked specifically in the art of understanding body language, facial expressions and how to influence people. I've also completed several courses that are around soft skills and emotional intelligence. It has always been the one thing that gets brought up repeatedly through my life so I actively sought to change it.

I still don't get why I have to smile, make eye contact, small talk, take an interest or anything else I'm expected to do. Especially at work... We're here to work, can we not just get on with it rather than doing this silly dance?

But I can copy it all very well now. It just requires a lot of concious thought all the time. And leads me to situations where I'll come home and just sit in the dark in silence once the kids are in bed and wait until it's time to sleep cause I just can't face anything else.

If I had a choice I'd never leave the house or socialise with pretty much anyone except the odd digital friend and DH. But I accept that you can't survive this world alone so you have to put the effort in and accept the sensory onslaught of going out and the mental exhaustion that goes with it and the socialising.

Also the sensory and routine issues. I have ANC ear buds that I use to block out sound. Perfumes I used to block out external smells. I will actively lower my eyes if I'm in a busy environment that's causing me to struggle to think. I actively avoid going somewhere new, and if I do go anywhere new I will rehearse the journey several times on Google maps and probably run it a few more times in my head as well as trying to predict any potential disruptions that could occur. You've also not seen me crying just because the towels aren't folded right 😬. Or when I'm rendered speechless and unable to think because the takeaway order wasn't in the packaging I expected so it was "wrong" and I couldn't eat it. None of that is stuff I'd say I "mask", but it is hidden. Cause unless I told you then you wouldn't know.

In reality people just know I can be a bit flakey and I'll normally say no if they invite me places. And that the explanations I give are pretty weak. It leads people to assume I don't value them or care. I do. But not in the way they expect. If they needed me to go and help them at crazy o'clock in an emergency I wouldn't hesitate, but ask me to go out to the pub for a meal and I'll probably ignore that text for as long as I probably can 😅😂.

I’ve been thinking more about this and have another example.

I haven’t had a birthday party since I was a teenager and when I time comes I absolutely won’t be having a hen do or a wedding reception. The thought of it is my idea of hell. I have a different mask that I have carefully cultivated to fit into each group - family, school friends, uni friends, work friends, old work friends and hobby friends. The thought of getting all of those people together and potentially, say, my school friends seeing the person I am with my uni friends and being shocked, fills me with dread. There is no way I could juggle all of those masks effectively and I’d have a huge meltdown trying.

Everyone does this to some extent, no one is the same person in front of their 90 year old granny as they are with their girlfriends down the pub. But I’m guessing for most NT people, their reaction to having all of their family and friendship groups in one place for a celebration would be “how lovely! All the people I love in one place.” Because they probably don’t hugely adapt their personality or who they are for each group so wouldn’t worry about how to behave. Whereas for me, it’s my idea of hell.

I’m diagnosed ADHD but starting to think I have ASD too!

@modelthroughit

Given that my eldest is autistic, chances are I am too. I’m not advocating sending anyone to their death, least of all myself?!

No, but Asperger would have done. And me, and all of the girls you did research on. Because he was only interested in the boys and sent the rest to Am Spiegelgrund.

That’s why the use of his name isn’t just an ‘easy shorthand,’ but a truly horrific alliance with a eugenicist.

@modelthroughit

’Do research on’ girls is fairly misrepresentative tbh; I undertook qualitative interviews families of autistic girls, with a view to increasing understanding and support for autistic girls.

I’m not going to argue about the current view of Asperger, because it appears conclusive overall. I guess I’m still looking to understand different presentations and experiences of autism, and somehow make sure that everyone gets the help they need. This relies on a certain level of understanding of the various terms

What do you do for work?

Do you not put on a work face and be professional and polite and then go home and let your true personality out?

Are you exactly the same at work as you are at home?
Do your work colleagues or customers know the real you?
If not, you are essentially masking.

This is what ND people do but it’s more exhausting because it’s more intense and you’re constantly having to think about what’s right and the normal way to act.

…so that we can move forward in our approach to helping and supporting autistic individuals.

I'm neurotypical, I think, and from my perspective (if you want it) I don't think about these things. I just do them. So it seems like the difference is being consciously aware of the behaviour. Masking sounds like it must be quite tiring.

It is exhausting at times.
It's even worse when the person you are speaking to is emotional about something. A few months ago, the wife of someone I know had quite a bad accident while skiing. I really didn't expect him to say something like that when I said hello and I was really thrown. I was silent for probably longer than is acceptable and then had to consciously react with a hand to my mouth and an 'oh no' type thing. I had to consider my facial movements (open eyes wider and mouth open with a sharp intake of breath) and also consider my body language, so the way I'm stood, what I do with my arms and hands and then also consider the words that come out of my mouth, all in a few seconds.
None of this happens instinctively, even with bad news.

Controversial question. But I wonder if there are any benefits to masking vs someone who is "unable" to mask.

I agree.

@XDownwiththissortofthingX

We get offended by that term because it's nonsense. There is no such thing as 'mild' autism. 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. OCD is common in Autistic individuals, many of whom would fit the idea of 'mild' Autism, but their lives are often rendered dysfunctional because of it. Severe recurring Depression is also common, as is generalised Anxiety. It's a misleading term that perpetuates a lingering myth about Autism

This commonly crops up within the high functioning Adult community. That the reason why this child with Autism cannot function is because they have low IQ's.. co morbidities. You will be very surprised that some of these children have normal IQ's and solely due to their Autism, they are unable to function. Not nice to hear. But I would not wish Autism on anybody.

*@XDownwiththissortofthingX

I can see your trying very hard to disassociate yourself from your profound Autistic allies by othering them and using the term "Oh... I consider myself Asperger's syndrome". Newsflash. Your Autism is their Autism. You are all one. Your Autism impacts you differently than the adults/children with profound Autism.

👏🏾👏🏾👏🏾

You said it loud and clear. Some of those profound children do not have associated IQ's or learning difficulties. It is, unfortunately due to their Autism and its impact.

My DD is awaiting an autism assessment. I've had concerns since she was a toddler due to behaviours at home but up until the last year or so nobody at school would even have thought it a possibility as she works very hard to confirm to typical standards.

As an example,she was recently at an activity day. I picked her up at the end and some of the other kids and supervising adults were around. I asked her if she had had a nice day. She nodded and said yes, answered some questions from one of the other adults and laughed along at something they said. We went out to the car park and she got quietly into the car, not saying anything. The second we had left the car park and were out of sight she had a complete meltdown - crying hysterically, shouting about what an awful day she'd had, completely fixated on some "mean" comment a "rude" adult had said. This lasted the whole 30 minute journey home and until she had had a chance to decompress in her bedroom at home. When I next saw the adults from the activity day they said what a nice day she had had and how well she joined in.

This sort of thing is common. I actually consider it fortunate that in the last few months she's had a couple of pretty big meltdowns at school for the first time, so they can actually see what I mean and don't think I'm making it all up.

I haven't read every page of the thread, so apologies if this has already been posted,but I recently saw autism represented as a "wheel" rather than a linear spectrum. A person with autism might present differently in the different areas. They would likely have difficulties in many of the areas rather than just one or two, but might "score" more strongly on emotional regulation, for example, than special interests. Personally I found it a helpful way of seeing it, although I don't know if others would agree.

We do those children and adults a disservice pretending autism is largely about being tired after social interactions
@jenala

Who has said autism is largely about being tired after social interactions? This is a post about masking so people are primarily posting about that.

The sensory issues are the ones that affect my life the most.

I can't wear shoes other than a certain pair of sandals. I've literally sat and cried when it's raining as I have to attempt to cope with closed toes

I can't wear clothes with a waistband

I can't wear a top that feels restrictive in any way

I need to wear sunglasses a lot, sometimes even indoors

Noise wise is even worse. Only last week a fire engine went past me when I was walking and set it's siren off right next to me. I dropped to my knees with my hands over my ears and cried.

I've just had to leave a very part time job because it's noisy and I cannot hear someone talking to me at all when there is background noise. I've had my hearing tested and it's fine, it's auditory processing disorder. I can't hear the TV without subtitles and sitting in a noisy cafe with all the clattering and banging is just torture.

I could go on and on about how I'm affected by my autism but apparently I'm 'high functioning' and am just tired after social interactions

@lavenderlou I find the wheel much better than a linear representation.
@WanderingWitches I hear you. Cafes. Nightmare. Auditory processing disorder and hearing impairment, in my case. Also if people ask me questions and think I'm not giving truthful answers because I don't answer instantly. No, I just need time to process what you've said.

I think of it like an unopened bottle of coke. Every time something happens that has a sensory impact or is a rule that is confusing, or takes a lot of social energy, the bottle is shaken. There's a lot of pressure on the inside, but on the outside it's just a normal bottle of coke.

Neurotypicals do this too, but their threshold for sensory impact, social energy or confusing rules is a lot higher than a neurodiverse persons.

For example, I need to go to the shop. My local self checkout bit has just installed a barrier to get out and you have to scan your receipt. I found out by walking into the barrier and setting off an alarm. It was loud and embarrassing. I need to go to the shop to buy dinner, and I'll go round the shop, and I'll look fine, but in my head I am replaying every step of how not to set that alarm off. I feel like I have already set off that alarm, I can feel myself doing it. It's fizzing me up, and I still need to to concentrate of what my kids are doing, and what's on my shopping list, and make complex decisions on what to buy. Then I bump into someone I know and my teeth are on edge and I can't keep up my "normal look" of back and forth conversation, they walk away and now I'm wondering if they think I was rude and I've still got to get past that bloody alarmed gate without setting it off... But on the outside I look calm and I'm communicating normally.

That's masking.

Don't know anyone at all can relate, but for me, I didn't know who I was and it was like I was always playing a part. I realise with hindsight that I was always adopting a persona, but not necessarily always the same one. People always say "be yourself" but I didn't know who that was.

There are obviously people who I'm more relaxed with and so I suppose I am probably myself with them. But but even at this stage in life, with the knowledge I now have, I can struggle to know where my personality begins and the "persona" ends.

When I first became aware of masking I wanted to cry because I realised that what I'd experienced for years was actually a thing that had a name.

Does that make sense to anyone??? Sorry I can't articulate it better!