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.

As a child I was constantly told I was boring.

This is the problem with clinical diagnosis of a physical condition - autistic brains have an excess of synaptic connections, as has been demonstrated by MRI scans

Otherwise posited as the poor neurotypicals suffering from an insufficiency of synapse connections, which is what leads to the bizarre ritualised social behaviours.

I was diagnosed only three years ago and also struggled with whether to pursue an assessment or not. It took me two years to work up to it and then when I was actually diagnosed another year and a bit to fully process it and almost grieve for the non-diagnosed girl that had so, so, so many struggles.

I had a great fear of being told I wasn’t autistic and having to face the fact that maybe I was just a horrible, unlikeable, weirdo and deserved all the bullying, nastiness, isolation, confusion and dangers I’ve experienced.

I am glad I went ahead with it now and have had counselling to help come to terms with it and accept, that actually, no, I’m NOT horrible, I’m actually very nice, but my brain works differently. Looking back I can now understand why certain things happened the way they did in my life and accept that not everything is my fault and I’ve been treated appallingly by people. I can also see where previous diagnoses of stress, depression, exhaustion were all related to autistic burnout.

I was honestly hoping somebody else would post that conclusion, because it's usually me.

Look, it's not our fault the NTs all have synaptic deficits. I just wonder how they managed to take over the world despite that...

I think adhders are less likely to mask due to impulsive nature of adhd.
I think we all mask to some extent nd or nt as that what society demands however my asd sons tolerance is low for things that make him uncomfortable, he masks that discomfort and it builds and builds until he explodes. He is learning to advocate for himself to politely remove himself before things become unbearable and he explodes

I had a great fear of being told I wasn’t autistic and having to face the fact that maybe I was just a horrible, unlikeable, weirdo and deserved all the bullying, nastiness, isolation, confusion and dangers I’ve experienced.

This articulates my fears very well.

I'm really struggling to reconcile the insistence from some in this thread that there is no such thing as 'mild' autism with the numerous accounts on here from people saying they only realised they had it when their kids were diagnosed, or similar.... surely these people have less obvious (to themselves and others) 'symptoms' / traits / whatever and it makes sense to describe their condition as mild.
My understanding is that autism isn't a specific 'thing' but rather the reification of a constellation of symptoms / traits into a condition... diagnosis is made on the basis of the extent to which a person exhibits these behaviours and so naturally some people will only just meet the threshold for a diagnosis. Why is it not acceptable to refer to these cases as mild?
As far as I'm aware it is not understood what 'causes' autism, and there may well not be a single underlying mechanism... in that sense I believe autism, like many other conditions, to be a cultural construction and the application of the label groups together a lot of potentially quite different things.

I was honestly hoping somebody else would post that conclusion, because it's usually me.

Well it's inescapable.

Look, it's not our fault the NTs all have synaptic deficits. I just wonder how they managed to take over the world despite that...

Bamboozled and exhausted us all into submission.

This is the problem with clinical diagnosis of a physical condition - autistic brains have an excess of synaptic connections, as has been demonstrated by MRI scans

Stupid question perhaps, as it may just come down to £/lack of neurologists/not wanting to scan unnecessarily but if this is the case, why the hell can't they just scan DS rather than a 24-month wait for an ADOS questionnaire?

I think your assumption may be faulty. See my earlier post - autism is clearly visible in scans as a difference in the construction of the brain, specifically localised synaptic excess relative to a neurotypical brain.

The presentation (what's often called "symptoms", although I really dislike that term because autism isn't just a collection of symptoms) is therefore directly related to the parts of the brain where the synaptic excess is concentrated, because that excess is generally uneven.

Basically, it's not a cultural construction at all - it's a physical difference in the structure of the brain.

Diagnosis is made on the basis of the extent to which a person exhibits these behaviours and so naturally some people will only just meet the threshold for a diagnosis. Why is it not acceptable to refer to these cases as mild?
I may be wrong, probably am, but I think it's because diagnosis is dependent on ASC having a persistent, daily impact: so depicting something as mild means you are placing people on a linear scale again. In other words a "high-functioning" child - who could have been described as Aspergers 30 years ago - is seen as coping better, until they're not.
But I have seen arguments on here that the umbrella term ASC doesn't do anyone any favours as there is a big difference, at least in terms of caring responsibilities, between Kanners and Aspergers for example.

I suspect it's down to the fact that the knowledge required to do so is still developing - and there just isn't enough funding for it, because organisations like Autism Speaks etc are sucking up all the cash...and they're never going to fund something like this, because it will directly affect their shock-and-horror marketing and revenue (it's harder to terrify parents into ploughing all their money into ABA when they can see lots of autistic people who never went through it yet are coping with life).

It's a physical difference in the structure of the brain
At birth or during cognitive development?

Primarily at birth, as far as I know, but a different starting point directly affects the subsequent development.

However, I'm not a medical researcher, so I'd advise your own research on that if you want to know more about it (rather than me giving you wrong info - I know my limits). The study I'm referencing was done on teens and adults, so I very much doubt there's much information based on that study using data from infants.

Basically, it's not a cultural construction at all - it's a physical difference in the structure of the brain.
I didn't know this, but it doesn't necessarily invalidate my point... are the brain differences universally associated with autism, to the extent that they could be used to make a definitive diagnosis or is it more a case of statistically significant differences being found between autistic and non autistic individuals.
It reminds me of when pharmaceutical companies cottoned onto the large untapped market for antidepressants in India - before they could market antidepressants they had to first market depression itself... not because no-one in India had symptoms that would be understood as depression elsewhere, but because these symptoms were understood very differently.

Yes, the outcome of the study is that the differences in brain structure are necessary and sufficient to diagnose autism.

In other words, autism is not a cultural construct.

Sorry, some of what I asked had been answered earlier. I was working backwards If physical not cultural construct, does this mean I can forgive myself for allowing mine so much screen time as toddlers? Or could I have changed their brain chemistry/synapses/structure with dopamine release/cortisol?

I was diagnosed with ADHD in my late 30s.

I have always struggled socially, but I realised very early on in life that I could make people like me by being “the funny one”. My quick-thinking ADHD brain could whip out witty remarks and quips very quickly and have an everyone around me laughing, and I basically went “aha! This is how I make friends, by being funny!” And it’s a mask I have worn my entire life. I felt I had to be witty, entertaining and “on” all the time in order to be good company, and if I wasn’t and the mask slipped, everyone would realise that I was actually a socially inept, boring weirdo. I was basically Chandler Bing for most of my life and it was exhausting.

If invited to events, I felt like I had to be on form the whole time or people would be thinking “oh, Truly is so boring this evening. What’s up with her? Don’t know why we invited her on this night out/trip, she’s not been good value at all. We won’t bother next time.” Sometimes I did burn myself out and get overstimulated and not have the energy for the comedian act, and I could see people losing interest in me and some friendships were lost. So I would then try to put on the act even more. It was utterly fucking exhausting. It also meant that very few people got to know the real me underneath the class clown act I put on, and friendships were very superficial.

Post diagnosis and on medication, I am putting the Chandler Bing act to bed. I can still be witty when I want to be, but I don’t feel the need to do it all the time or make it my entire personality. If people don’t like me without the “funny one” mask, then they aren’t my people.

I’m slowly realising I’ve masked in a lot of ways throughout my life, but this is the one that’s been my most constant.

Honestly if your children are autistic and you’re trying to look for a reason why, the most likely answer is that one or both their parents are. There are some genetic mutations that can cause ASD without a parent having the condition themselves but honestly in my own experience most people have a lightbulb moment when their children start showing traits.

Yes, from everything I've read (which is a lot - the #1 special interest for every newly-diagnosed autistic is...autism), you can forgive yourself. It's defined as a developmental disorder, but that's mainly because it affects development - its incidence is firmly rooted in genetics, and there is no credible evidence that anything can cause autism post-birth (or even post-conception).

It's there from birth, and there's nothing you've done since which would have changed that.

I don't need to find a reason but I have encountered nurture/nature pushback for four years including so-called professionals talking of "all of us have our quirks" etc You feel gaslit and start questioning everything you ever did.
I have a child who has finally been placed on the MAAT pathway and a middle child who is struggling more now they are teenagers (I was fire-fighting and concentrated on the younger one when the older one has sensory overload too and has been socially awkward for years). My eldest adult child struggles with having only so much in the tank for social interaction and when faced with a wall of sound.
Both my girls did not present as dramatically as my son. I feel like I have let them all down to be honest. I am not looking for someone or something to blame. Love them all. But a superpower it isn't.

Masking - you learn what the socially acceptable thing to do is, but you dont really 'get' why and you are aware that you dont seem to see the world the same way as other people.

Don’t feel guilty, I sometimes feel that maybe I let my eldest down as his brother presented so ‘typically’ with ASD that when the paediatrician initially said my eldest seemed ‘closer to typical than autistic’ I didn’t fight it. However his school felt very very very (😳) differently, and months later I appealed with not taking no as an answer. I think the moment I let go of the notion that ‘professionals know best’ when they try and fob you off is when you get a different perspective. You’re meant to be able to take their word, but it only takes one talking out of their bumhole to make you feel like you’re the one going daft and seeing things that aren’t there…

Thank you for your replies. It doesn't matter where the genetics lie. I see some traits in myself (that said, the questionnaires will do that to you) and some in my father (who insists my children are NT) but nothing on my sister's side.

I resonate so much with this.

In my case, I always acted more superficial/dumb than I actually was because that's how I was treated for repeatedly forgetting my homework/ruler/sharpener, etc! I was the "ditzy one" and in a way I was, but nobody knew I was hyperlexic and labelled gifted as a child. I used to tell my teacher I needed the toilet so I could go for a walk because I was in a state of constant restlessness.

I fell apart during A Levels because I wasn't organised. I changed college courses twice then dropped out and job hopped throughout my twenties. I know that as a person I'm hard work and I can't hide it that well.

My friend was recently diagnosed with ADHD (privately) but, prior to her diagnosis, worked two jobs, kept on top of household admin stuff, and would laugh whenever I zoned out. She said she was masking before but her diagnosis made me question the validity of my own.

In regard to autism, I understand masking more thanks to this thread. Actually wondering if I'm autistic despite my DSM result. I understand there's a lot of overlap between ADHD and autism.