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.

Thanks gerr, did a diagnosis help your older son's understanding of himself/his schooling/his social life? I am not sure whether to pursue for her now. She is 12.

Genetic doesn't mean it HAS to come for one or other parent. It could be someone in the wider family. And most families have someone ND in wider family, let's face it.

In our instance - neither parent showing any of the signs (inc the "female" presentations), scoring low on questionnaires like the ones posted on this thread earlier. But hey - forget rigorous diagnosis of a condition. One of us MUST be autistic, eh? DH used to collect football stickers and gets fed up being squished on the Tube - see, bingo! It really hacks me off, this seemingly insatiable urge to tell people they must be autistic/have ADHD. It cheapens the very real challenges people with those conditions face inc my own child.

I said most likely, not definitive. There are some cases where there is no apparent family history, but simply comes from an identifiable condition or syndrome that was dormant in the parents line. In my child’s case, no genetic syndrome could be identified but we as his parents recognised it in dad. And probably me but that’s something I’m still trying to work out. But that’s our circumstances - whatever the case it isn’t something that could be changed however much screen time a child gets.

Sorry to come back to this, but can I ask why you’re so offended by the thought that one of the parents may be undiagnosed and not realised it? What so offensive about possibly being autistic exactly that even considering the prospect results in such an aggressive response? No one is demanding that parents accept that must have passed it on somehow. As long as the ASD child is getting the correct support that’s all matters.

No, we are not all “a little bit autistic”! People can’t be “a little bit autistic” in the same way that they can’t be “a little bit pregnant”. You either are or you aren’t! But if you are autistic (or pregnant) there are some typical symptoms and some less common ones, and some rare symptoms too, and some people are more incapacitated by their condition than others.

NT people socialise naturally. They may sometimes think about what to say or how to behave, but that isn’t masking, because it’s still a natural normal behaviour. Compare that to an autistic person who has no idea how to behave in any situation. Everything they do is learned and copied. They don’t understand why these are the rules, they just know that’s what they are supposed to do…

… but crucially, they still fail. For example autistic people know they’re supposed to smile, so they smile, but NT people pick up on the fact that it’s not natural and they find it awkward and uncomfortable, and then they ostracise the autistic person.

My therapist taught me to do what’s called a Duchenne Smile, which NT people respond better to because they find it authentic. All of you who claim “everyone is a bit autistic” have never had to be taught to do a fucking Duchenne Smile, looking in the mirror and consciously contracting one muscle group at a time until you reach a facial expression that is acceptable to society at large. That’s the difference.

The risk is that when you blindly copy the behaviour of a group to persuade them to accept you, you end up copying bad behaviour sometimes. You end up being easily led and doing things that aren’t acceptable… and you have no idea. You end up being abused and taken advantage of. And you have no self, because everything you do is fake. You’re a chameleon. It’s exhausting, like being in a never ending stage play.

This question isn’t meant to attempt to prove or disprove the ‘no such thing as mild autism’ statement and isn’t meant to challenge or annoy anyone on either side of that discussion, it is just a general wondering and I thought some of you might know the answer:

if there is no such thing as mild autism, how is it that some babies/toddlers have a classical presentation of it (e.g. suddenly losing language at around 18 months, no eye contact, non verbal or extremely late to talk etc) whereas others don’t exhibit this or only exhibit it to a much lesser level, and their autism only makes itself obvious to others years later? Surely a baby or young toddler can’t ‘mask’ yet so why aren’t they all showing similar symptoms? I’d be really interested to find out if anybody knows why.

I only realised some of the things I do which are apparently "masking" after DP told me. Things like dressing 'in character' for a new job (rather than wearing my own style but a bit more professional for example). I also mimic people's accents, on the phone, taxi drivers, and it's really hard to not do it even though I think it's probably weird.

Without sharing some 'potentially outing' info, I've worked with/alongside autistic people for a few decades, and have obviously considered how their lives and characteristics relate to me, I've usually felt my experiences point more towards Social/Generalised Anxiety Disorder (which I have been diagnosed with) than Autism. This isn't because I'm reluctant to accept it as truth, but because 1) self diagnosis is fraught with error, and 2) I feel that autistic people's experiences are more complex than mine. I'm not closed in anyway to the idea, but without a formal diagnosis, I'm not going to appropriate a condition I don't know I have.

Just for giggles, and whilst acknowledging that it's probably quite flawed, and that Baron-Cohen isn't enormously popular with some autistic people, I completed the test that was linked earlier.

I scored 32.

The scoring explanation is as follows:

"What does my score mean?The AQ doesn’t really offer much insight into specific autistic traits, as it only outputs a single score. Any scores of 26 or greater indicate the presence of autistic traits; the higher the score, the more autistic traits you have.
Furthermore, 79.3% of autistic people score 32 or higher (whereas only 2% of controls do), so scores of 32 and above are particularly significant. The AQ is particularly sensitive in distinguishing between autistic and non-autistic adult females, as 92.3% of autistic females scored 32 or higher (compared to 1% of the control group).[9]
Do note that no single test is conclusive, and not every autistic person necessarily scores above the defined threshold on each test. If you score low on the AQ but still think you could be autistic, try taking a few other autism tests."

So maybe, but, well, as I said flawed and not definitive.

This could just be convergence though.

@PietariKontio

Really interesting feedback from the AQ test, incidentally I got a similar score. I sent it to my mum who is beyond doubt autistic and she scored 12 so I don’t think it worked in her case.

To a lesser degree. I was situational mute until 12 when I invented brave kajsa who could speak to people, but the real me hasn’t learned to do this if I don’t fake it.

@KajsaKavat is that related to autism? I'm

The diagnosis used to be based on the medical model of disability. So would look at speech, literacy and declare one person high functioning and one low etc. That completely ignores the side issues of social anxiety, obsessiveness, inflexibility, low self esteem etc and how that can mean the person massively underachieves. I can pass exams and I have masked well from about 33 years old, but my autism has had a big detrimental effect on my life. It's cut down on my life chances, but I'd be classed as having mild autism. My DD, has LD's/speech and language issues because of her autism. She'd be classed as low functioning. But she's masked from her teens and can mix in ways I can't. Her autism means that she doesn't really care about other people (opinion etc) and there's strength in that.

She's also a lot more sensible than me. I should have added that when considering the whole person the concept of high and low/mild would change.

I've found this thread incredibly insightful. I do have a question that I'd love someone to try to answer, if possible. A few pp have said that either someone is autistic or they are not, that it is very black and white. Could I ask how the broader autistic phenotype fits into this? My son is on the pathway towards assessment, through school, but he seems quite borderline to me. We all agree that he most definitely displays many traits, some of which create challenges for him sometimes, but he currently seems to manage well with very little extra support at school (8 years old). My guess is that he is likely to fit into the BAP category, but how do people like this fit into the 'either autistic or not' definition? How would it fit into the MRI scan of the brain? I'm finding the whole thing quite challenging to understand. The more research I do, the more there is to try to evaluate.

I used to not understand it also, until I began to think of it in terms of another skill like numeracy.

Being able to mask is a bit like copying your friends answers in a maths exam. You might be able to pass the test, but you don't have the necessary skill set to be able to use numerical information flexibly in different environments.

If you've copied your friends answers on your maths test, you might look to all the world like you know your stuff. But when you go to a shop and need to work out quickly in your head whether the shopkeeper is giving you the right change from £20 for the the three items you're purchasing, you don't have the fundamental skills to do so.

Perhaps not the best analogy but it works for me!

A good primary school (and they're not all good) often is a manageable environment for a bright autistic child. Autists are natural systemisers and taxonomists so, as long as a setting is orderly, not too noisy, and reasonably friendly, they'll figure it out. Especially if they're bright.

Home is usually an environment tailored around the child's needs, so again, not very challenging.

It's a mistake to think that because a child is doing okay at home and in primary school, that their autism is "mild" or "borderline" or insignificant.

It's a bit like assuming a blind person isn't really truly blind because they can cope in small, familiar environments,

The MRI thing is still at the research stage. Don't get bogged down by that.

That's a pretty good analogy, as far as the social interaction part of it goes.

You can even take it a step or two further - when you encounter something that's not exactly what the test asked, you can try to answer it by trying to remember your friend's working. It's really hard work to try to remember everything they wrote and then plug new numbers in because you don't really understand the steps involved, you're just parroting what you saw before.

As a result, you put in tons of extra work in the moment and get it wrong a fair proportion of the time. Meanwhile, your other friends are saying, "Why don't you just learn how to do it? It's easy!" when it just isn't an option for you in the first place.

The only logical solution, therefore, is that you need to learn all the possible maths problems by heart so you can reproduce the working on demand, but knowing that you'll never really understand what all those symbols mean.

Thank you, that's really helpful x

For those who are querying the outdated use of Asperger’s as a diagnosis, please do the bare minimum of research.

A quick google gives you pages and pages of explanation as to why it was retired (TEN years ago!) but to save you the effort:

This one is pretty clear.

To answer some of the inevitable questions: yes, I’m autistic myself. Yes, I’ve got a formal diagnosis; I mask; I have autistic family members and work with autistic teens on a regular basis.

@Somethingsnappy

I'm fascinated by the apparent grey areas and BAP too.
I'm from a large family, the only one diagnosed. Intriguingly, my siblings display some similar behaviours or (unusual?) thought processes that in me would probably be seen as related to autism, but they haven't had the same troubles in life. All sociable, doing interesting work they like, have partners etc. Even more oddly, the one sibling who I'm sure is autistic (and sufficiently so I reckon they'd get diagnosed at the the first appointment without need for all the tests!) is the one I seem to have least in common with. (Actually we wind each other up with opposite autism traits. They follow rules, I question everything...)

That all very much describes me...

I can’t say it’s adhd, but these are (some) of the reasons I’ve asked to be referred for a diagnosis/medication. But also terrified that if I get these symptoms ‘managed’ then the ASD traits I’ve been pretending I don’t have for 30 odd years will come exploding out…

@Gerrataere DS has just been diagnosed as Autistic, and there's a lot of things that never stood out as odd because I do them too, so I've been wondering about myself. But that list, I could tick everything, and someone posted on Mumsnet a while back about being ADHD and their description of themselves, it could have been written by me.

@modelthroughit There’s an interesting bit in Neurotribes defending Hans Asperger which slightly counteracts this argument, worth a read.

DS1 has Asperger’s in brackets on his official diagnosis/report, after ‘Autism Level 1’. I find it a helpful shorthand when discussing his needs.