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 understand just enough to pretend during human interaction but pretty much all conversations I have with people I don't know or don't know well feel completely fake at the time. I am absolutely screaming inside my head when I talk to strangers. I'm often going off a script basically I have some phrases that seem to work but I can't really improvise and when I have is when I often seem to go wrong and inadvertently offend people. I am really bad a working out what people are thinking during a conversation or what they mean as I tend to interpret things literally. I am also constantly having to think, what expression should I do with my face now while talking and keep reassessing and reassessing because if I don't then people don't seem to like it, I think I'm too blank faced. Also I have trained myself to make eye contact but it feels like someone is touching me when I do and it's upsetting.
When I heard the term masking it made sense to me as I do feel like I am acting most of the time.

I think what can be hard is the assumption that if you're NT then social stuff all comes naturally to you, and you're being incredibly offensive to suggest that some of the difficulties those with autism describe also happen to you to a degree.

I'm pretty sure I'm NT and would never want to suggest I experience the level of difficulties others do. However I do consciously monitor pauses, topics, eye contact with people who aren't close friends. I walk into a situation at work acting breezy and witty, the entire time doubting myself and thinking I sound like an idiot, and leave feeling like I was trying to hard/people think I'm dumb, to the point I feel physically anxious and tired. I regularly have a running conscious narrator/outside voice looking at my social interactions and commenting. I find too many sounds at once physically stressful.

I do wonder what it would do to me if I decided these problems were unique to me and most other people don't experience them. I think I'd fixate on them more. As it is I can just put them down as part of life, and that it's unusual evolutionarily for us to be around such a lot of sound and such a range of unknown people.

I also think there's lot of people with 'mild' autism who again get offended by that term but there simply is a difference between someone who can function but finds social interaction and understanding more exhausting than others and someone who is non verbal and can do very little self care tasks. They simply aren't having a comparable experience. I just did a days autism awareness training which was run by a very high functioning (not a comment on how hard she works to manage it, just a comment that she is able to find strategies to manage it) with absolutely zero mention of the autistic children I have worked with who could never even understand the terms she used let alone run a course. That are non verbal, smear their faeces, become aggressive when overwhelmed, have incredibly limited diets etc. We do those children and adults a disservice pretending autism is largely about being tired after social interactions. There's an odd amount of activism around the subject.

@Capitulatingpanda is right about taking things literally.

As a result, women & girls with autism are often at greater risk of sexual assault or abuse, because they take things literally. Would you take half of what a man on a date, says literally?

Autism creates vulnerabilities that have barely been addressed yet.

Masking isnt a specific neurodiverse thing. The difference is nd norms are different to nt norms so theres more masking going on to fit in, plus some of the stuff being masked is stuff that helps regulate, or helps processing so the impact is a stressed person who didnt take anything on.

I have absolutely ended up in some dangerous and unwanted situations with men for this reason.

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

what a nice way to minimise everything people have shared on this thread. Think you might need to go on that course again. Nobody except you has said that autism is largely about that but this is a thread about masking which is one aspect of ND we are currently discussing.

A ND person who masks might-

• Suppress sensory behaviours and only do them in private, which is a bit like not scratching an itch.
• Make eye contact even though they feel very uncomfortable doing it.
• Spend hours rehearsing conversations through play or in their head.
• Spend a lot of energy trying to say the ‘right’ thing rather than have a natural conversation.
• Not say very much incase they get it wrong.
• Not partake in actives they love because they are ‘weird’ or immature.
• Put up with being treated poorly so they have friends and seem more typical.
• Make up excuses to spend time alone
• consciously make facial expressions that do not come naturally.
• Consciously use tone and inflection in that does not come naturally
• Lie about their experience, feelings and behaviours.

There’s lots more things I’m sure. But ultimately I think if ND people expressing their experiences of social interaction then everyone needs to believe and support that. Not doubt it or question it. The evidence that masking is a thing is that people experience it, even if it’s not you.

To be honest I do this and I'm not autistic.

@Daleksatemyshed accommodations, as you say, aren't a one size fits all. For my two what they need differs according to setting. So in school my DD needs a constant, predictable relationship with an adult that feels safe for her - so she has someone who gets her and understands her difficulties. She needs clear rules in the classroom and for every teacher to explain and enforce them in the same way (because she doesn't have the social flexibility to understand that different people do things differently). She needs a calm classroom, too much noise is over stimulating for her and she can't cope so if they're doing something noisy or a bit chaotic she needs to be able to remove herself. She works best if she's able to sing while she works (not practical in mainstream classes but it means she never shows the best of her work).

My DS has a different presentation, he stims and has non-verbal ticks, so he needs a teacher who understands he needs to move - so fidget toys, active learning etc. The effort for him of needing to sit still and listen for learning is incredible and actually he doesn't learn well sitting still. He is very social within his small group of friends, so needs at least one of his closest friends in his class so he doesn't feel isolated and can connect in with the class.

At a birthday party, for example, my DS needs no to be put under pressure to join in group games - there are some he can manage but would rather do an individual activity. At his birthday party we had his 4 closest friends, two of whom have ASD. It was interesting watching them each do their own thing in each other's space, joining some group games but we also set up a lego station, a nerf gun station with a target, a construction station with card, glue guns etc. The kids could chose what they did, when and with whom.

My DD finds the stress of managing different needs of different people in friendships too confusing, so her birthdays are usually celebrated with one or two friends that she knows will get on with each other.

If we got out for dinner, my DS needs something to play with - a fidget toy, stress ball or something. He also needs at least one familiar meal on the menu, he won't try anything new away from the house. My DD needs someone to chat with her constantly because otherwise she'll be listening in to other people's conversations and commenting, because she doesn't understand that the conversation doesn't include her. She will eat just about anything (including food on my plate) because she wants to try new things and doesn't understand that food on my plate isn't her food.

It's about knowing the individual and understanding that they need X even if you don't understand why they need it. More generally, being flexible in your approach to people and situations, trying to suspend judgement and go with the flow, letting the other person lead.

@surveythebest thank you for your answer. I know it's different for everyone and I don't want to derail the thread

I'm an autistic woman in my fifties. I think of masking as "acting normal". For me it basically means suppressing my stims, trying to hide my aversion to sensory issues like light and noise, scripting to engage in small talk etc. It is suppressing all my natural instincts and has been a lifelong performance borne out of fear. It is exhausting and does lead to meltdowns, overwhelm, self harm, depression.
It has become harder and harder to maintain the facade which means I spend less and less time with people, need support workers to go in supermarkets and engage on phone with services.

I also think there's lot of people with 'mild' autism who again get offended by that term but there simply is a difference between someone who can function but finds social interaction and understanding more exhausting than others and someone who is non verbal and can do very little self care tasks. They simply aren't having a comparable experience. I just did a days autism awareness training which was run by a very high functioning (not a comment on how hard she works to manage it, just a comment that she is able to find strategies to manage it) with absolutely zero mention of the autistic children I have worked with who could never even understand the terms she used let alone run a course. That are non verbal, smear their faeces, become aggressive when overwhelmed, have incredibly limited diets etc. We do those children and adults a disservice pretending autism is largely about being tired after social interactions. There's an odd amount of activism around the subject.

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.

I'm autistic. I would have thought 'I can't mask' but I had an experience of it.

I got into the car and was doing the things you do before you drive. A neighbour came (crept) up behind me and spoke. I hadn't seen her at all but suddenly she was there, in my space, interrupting my train of thought.

I screamed. Loudly. My second scream was 'Dear God, what's happening here?'. My inner self expressed itself clearly. I was completely shaken and disturbed by her intrusion.

But

For her sake (she's a nice neighbour!) I had to stop screaming, cover up how I was feeling, be calm, smile and explain that as I'm autistic, these things will happen from time to time. Absolutely masking.

I was shaken for hours. People should know not to do that. Always approach from the front!

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.

While that may be true, autism is also considered a spectrum disorder, meaning people will be impacted differently by a constellation of difficulties that all fit the criterion for autism. Some will manage daily life more easily than others, some won't manage at all without necessarily the presence of any other condition.

@Jenala While I would never understate the tragic difficulties faced by those so severely affected that they cannot self-care (and their families), being exhausted after social interaction is NOT the limit of issues faced by those with 'mild' autism.

ND individuals face life long stress and a sense of exclusion. They suffer from a deprivation of friendships, social interaction and intimate relationships. They are at far greater risk of abuse (of all kind) by those who would take advantage. And their life expectancy is significantly lower than the general population due to accidents, illness resulting from all that stress, and suicide.

I have undiagnosed adhd but I am also sure I’ve been hyper-masking autism since childhood. I have had it drilled into me (mostly by my parents and teachers, but other kids as well) that I was:

Weird
Away with the fairies
Say things in a horribly direct way
Wont back down when I think I’m right even to the detriment of myself/others
Talk about things that have no interest to others
Clever but no ability to work hard/do the work expected of me
Have interest that were beyond or under my age
Can remember a range of facts but incapable of remembering basic life functions.
Have amazing insight but immature responses
Unlikable for an indescribable reason
Overthink
Dont think things through
Too quiet
Too loud….

So in my teen years I disassociated with everything and everyone. I felt like the world was a box and I was looking into it, learning how everyone else behaved. Then I applied those behaviours to myself in whatever situation I was in as soon as I moved out. And I still do so, I chameleon myself with whatever group of people I’m with. I put them into ‘personality’ boxes and meet their energy, I let them tell me who they are and don’t give much away about the ‘real me’ so they think I’m a human being just like them 🤣.

It’s exhausting though. When I’m at home I can be me. I don’t have to explain myself to anyone or worry about the million weird thoughts or conversations that run through my head. I don’t have meltdowns, I’ve had a few panic attacks in my life though.

For me, masking means consciously, and constantly, analysing in minute detail what the person I'm conversing with is saying, their tone of voice, their facial expressions, body language etc. Simultaneously I'm hyper aware of my own facial expressions, tone of voice, body language. Are they correct for what I'm saying, in response to what they're saying, are they too muted/exagerrated? It's not a natural or instinctive process. At all. Exhausting.

Masking example outside of ND setting.

I have severe depression at the moment. I find no joy in life right now. I feel. I real emotion. Just flat. Every day is the same. If I could magically cease to exist with zero impact on those around me I’d press the button. I know this will pass. I’ve been here before.

I mask every day when around others. I know to smile, to chat, engage, small talk. Concentrate on my facial expressions so I’m not walking around like I’m dead inside. Remember to engage again. Act positive. Don’t let the real stuff out. Fit in. Maintain social expectations. Repeat.

Even at my best I mask as I have insecurities and anxieties. I have a persona I present to the world. It’s like something I slip on when leaving the house.

I think the masking description is off as it usually assumes its black and white. All NT people feel genuine emotions during interactions all the time, and for ND people they don't and its always a mask.
But I don't think it is a distinctive trait of autism in and of itself. Most NT people 'mask' in daily life or at least regularly. Like you don't really care if a random coworker's cat died or if the old lady on the check out is seeing her cute grandkids at the weekend, but you play along.

I think the issue is how you learn them. People with ASD who can learn them will have to consciously monitor and make effort to work within them whereas for others, they are absorbed and applied instinctively.
not all people with ASD can do this effectively. My DS is not terribly good at it despite being very conscious of how the differences in his behaviour are perceived negatively by others.
the world is tough and tiring for people with ASD whichever way you slice it.

Just because my autism only affects you "mildly" because I don't have a comorbid learning difficulty, doesn't mean it only affects me mildly. Please don't minimise my condition by telling me it's only "mild".

@MintJulia all those things are true. But I have Asperger's (again, today I'd just be diagnosed with autism like my profound son)

Now imagine your child could be physically, emotionally and sexually abused by anyone. And they can't tell you. Can't speak it. Can't even write it down or sign it because they're completely disabled by their autism.

My son has an inappropriate response to pain, for example. When he was 5 he got appendicitis. It had burst and he still did nothing but look a bit annoyed, but still couldn't point for example to the pain, as he doesn't know how to point!

I thought something was really off. His face then went a bit grey and he collapsed. 5 hours later he returned from surgery, severe septic reaction to a ruptured appendix, followed by pancreatitis.

He gets respite care and I don't even know one carer to the next because there's a shortage. I have to trust every time that they won't abuse him. Because I just wouldn't know. His special school teachers are amazing - I can't fault them. But I'd never know if someone abused or hurt him.

He is trapped. I worry what'll happen when I'm eventually dead and count my lucky stars every day that I can 'mask' my own autism and have the ability to speak out and type this to you

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.

It's not about autism 'top trumps' either. I agree with @surveythebest that there needs to be some agreed way to describe different situations, and I will still sometimes use 'Aspergers' myself because I know that most people associate that with Autism without profound learning disability, so it's a matter of expediency, even though I know it's a contentious term and not officially used any more.

Why I do not accept the use of 'mild' is because it diminishes and minimises how the individual experiences their own condition. Do I recognise the difference between myself, holding down a job, having relationships, being able to live independently, and an autistic child who will never be able to do any of that? Of course I do, but do I consider my autism 'mild' when I'm in the middle of a months long mental health breakdown, dealing with severe depression that is absolutely comorbid with Autism? No, not particularly, because at that point I'm pretty much rendered incapable of independent living myself.

I live with two autistic people and the physical behaviours and stims that help them regulate are things they suppress when masking. For example, rocking and pacing around when talking are generally behaviours that allistic people disparage. The suppression of them causes exhaustion and low mood.