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.

Totally makes sense!
I was diagnosed about 6 years ago now and am still a work in progress. Even now I have to stop and really think what I actually like and don't like.

I do this too! It’s crazy really.

@TheOutlaws

My dx was and is Aspergers. Also one of my DC has an Aspergers diagnosis.

I completely understand why you find it a useful shorthand.

It was a perfectly well understood term for yonks (and look at the knots we all get in trying to do without it) but since reexamination of Hans the Eugenicist, we're all supposed to act like using the term is invoking him somehow. Like the devil will appear in a puff of smoke and start slaughtering us. It's a form of linguistic Puritanism and I must admit I don't get it.

I need to wear sunglasses a lot, sometimes even indoors

Oh god. That's reminded of my partner in my 20s who was convinced my attachment to my sunglasses was in some way narcissistic. I didn't even properly notice he was abusive until he broke all three pairs I had and I had to live in the glare.

I suppose it depends on your definition. The cause might well be the same. The needs differ hugely.

In day to day terms, we are advocating for understanding & reasonable adjustments.

Im happy to show solidarity with non-verbal/ low functioning/ whatever autists whenever it's needed, but in terms of day to day needs and support, I'm a professional with a mortgage and a household and there's not common cause there in terms of what's required to improve all our lives.

It's particularly important to be able to indicate somehow what level of functioning (our own, our children's, someone else's..) we mean when we're communicating in writing.

@JeandeServiette

Perhaps ‘Level 1’ autism needs a new differentiator, or diagnosis, separate from its controversial history.

This resonates for me. I don't think I'd put it as strongly as you have there as I do know my likes and dislikes. But I have to be careful who I spend time with as I adopt their mannerisms and behaviours immediately and then they become my defaults. Same as TV shows, I subconsciously adopt whatever I'm watching at the time which can be very frustrating.

We need something.

I really agree.

Treating all autism as one is as unfair on the high needs autism as it is on the low needs autism. "Dave can handle loud noises, why can't you" and "Dave gets told when to say thank you to the customers, so I'm going to remind you as well".

We need to take away the whole "aspie supremacist" stuff, and have distinctions that actually reflect people's behaviour and characteristics, so that it is easy to identify the support they need and that expectations are adjusted higher or lower as necessary.

I would have autism and ADHD rolled into one big chart like a Myers Briggs style thing, instead of an ENFJ you could be something like a "Social-verbal-sensory seeker-masker", based on things like social skills, masking ability,sensory needs, body control, understanding, verbal ability, maths ability... That sort of thing.

@Idtotallybangdreamoftheendlessnotgonnalie

I was going to write the same in my post, the exact same. There is a strong ‘AuDHD’ streak in my family: sensory issues, highly intelligent, fast brains, hyperfocus, creativity, hyperlexia, difficulty naming emotions, difficulty taking criticism. This is a distinct category of person with no label and differs materially and experientially from other ‘subtypes’.

That's a really sound suggestion actually @Idtotallybangdreamoftheendlessnotgonnalie

All my DC have autism diagnoses but adult DD is now going for ADHD assessment. It's so common to have that comorbity or overlap.

You've just described me, my sister and my daughter to a T!

We call it "AumAdillo" between us because we are hard and brittle on the outside and soft and squidgy on the inside. I hope that in the next 10 years this will become a more of a studied ND subtype. There has to be a huge number of girls in particular struggling with this.

I might go and hyperfocus on my Myers Brigg style chart for a bit 🤣

I think treating it as two separate things is like treating a cough and a runny nose as separate ailments, when really it's all just part of having a cold.

Couldn't you have watched the Chris Packham documentary or followed one of the many, many autistic posters on Instagram who explain this in depth?

I don't believe someone with an ADHD diagnosis would really come on MN and ask what masking is and suggest it's not real.

@Idtotallybangdreamoftheendlessnotgonnalie

I like your MB style chart and I believe it has uses, it’s also helpful in highlighting the intersection of personality and autism, which is why autism is heterogenous in presentation.

Had I been 30 years younger, I believe my parents might have sought an assessment for me. Everyone just used to say I was ‘highly strung’ or a ‘funny little thing’ when I blurted out mad grown up phrases or had an emotional/sensory meltdown. I also lost everything, all the time, to a pathological extent.

I think this describes so many females with autism/adhd. Almost all the research is in males and that desperately needs addressing. Personally I don’t think it’s people Willy bully deciding they have adhd but that a lot of females (and some males) have this brain functioning. And it’s linked to eating disorders, mental health issues, getting into bad relationships so really needs some in depth study.

@BungleandGeorge

Agree. I’m about to apply for the EdPsych professional doctorate and, if successful, I’ll make neurodivergence in girls my dissertation topic. Perhaps something around emotionally-based school non-attendance in autistic girls, or help and support with communication and interaction.

I’d be happy to partake in that, I think my overall secondary school attendance was about 40%. Couldn’t cope at all 😳

@Gerrataere

So sorry to hear that. We have just employed an EBSNA support worker as a point of contact between girls, parents and school. It’s recommended that girls have a specific member of staff who they can go to when overwhelmed during the school day. We’ve successfully reintegrated girls into lessons by making a few reasonable adjustments.

That’s fantastic! I got overwhelmed with school to the point of becoming physically ill, so I missed school, so I was shouted at, so I missed school, so I was shouted at. Apparently my teachers nicknamed me ‘Where’s Wally’, absolutely charming fuc… people. I completely refused to go after another bout of illness made me miss a mock exam, when I went in the afternoon my head of year screamed at me in front of hundreds of kids.

Im so so glad that neurodivergence is recognised in girls these days. I’d never wish my school years on anyone.

That sounds good for the girls TheOutlaws.

Unfortunately I don't think things improve in adulthood and I think accessing support can be just as hard for autistic women.
I'm currently having NHS treatment for an eating disorder and there is zero autism awareness. I was threatened with discharge after just 3 appointments for not engaging. When I asked to bring someone with me to an appointment it was refused. I'm not sure I'll be able to carry on with treatment as they are not willing to make reasonable adjustments for me.

@Gerrataere

This is so distressing. No wonder you refused school. Interestingly, there is a possible link between autistic girls and PMDD which can be an explanation for non-attendance.

Please find an advocate https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/someone-to-speak-up-for-you-advocate/

Every time I leave my house, it’s like I am stepping on to the stage of a Broadway show. I am a talented actress, but performing all day, every day is exhausting.

Sorry to jump on this comment... This is interesting. Where is it recommended, please? I'm trying to work with my DD's school, as she has a long history of anxiety related absences, and they won't put in support for her unless I can provide evidence of it being Best Practice... they also say that my DD doesn't need a specific member of staff to go to, as the pastoral team are sufficient. She's never met anyone in the pastoral team, so she can't access their support.
And what reasonable adjustments have been effective? I've asked for homework concessions (due to executive functioning differences making it extremely challenging, and a 30 min piece of homework takes 3 hours), late starts (due to disrupted sleep patterns), a safe person at school (as she struggles to initiate interaction), and a quiet place to go to (she frequently experiences sensory overloads and shuts down). None of these have been authorised as she masks in school, so she appears to be doing fine. Except for the EBSA...