Should levels be based on ability to mask?

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Title.

Currently, levels are based on support needs but given the broad spectrum of skills among individuals, a high-masking person doesn't necessarily struggle less than someone who find it harder or does not want to mask. It's misleading to assume that high-masking skills directly relate to one's ability to function, but that's usually how the assessment is equivalent to. This also means that people who may experience severe suffering may be excluded a diagnosis and therefore right to support, just because they are able to mask well.

The underlying assumption that high masking means less need for support is in my opinion based on a neurotypical perspective that what is the most valuable skill in society is one's ability to socially function and fit into various social settings. Since masking is a necessary adaption for the autistic to survive in a largely neurotypical world, developing a strong masking skill is merely a compensatory technique that fundamentally hides the autistic struggle. To understand what the autistic is masking would therefore lead to a better understanding of what support each autistic person needs.

Maybe I'm just rambling but I thought it would therefore be better to base criteria for support based on levels of masking. What do you think?

No one factor is ever going to adequately address this issue. I'm definitely one of the best when it comes to masking, or at least when I'm not massively overworked and overstressed, but I almost killed myself drinking too much water during a heat wave due to not knowing when to start and stop drinking and there's a bunch of other stuff that I can't figure out how to do regardless.

Personally, I think that moving to a two factor score involving masking ability and support level would be a significant step in the right direction, it would still be woefully inadequate, but since we're apparently in a world where we're not acknowledging that different types of autism are separate things that don't necessarily always have that much in common, here we are.

Too much masking often causes psychological damage over time. This means while you may need level one support or do not need enough support to warrant a diagnosis at the time of the assessment a couple of years later you may need level two support that need not have happened if masking was taken into account

The problem is, is that while an outsider can measure support needs/ability to function in society masking is 100 percent self report. When you have been masking for decades often you greatly underestimate the amount of masking you do because it is normal for you and there is no means to compare yourself with others

Like MatchboxVegabond said such time as there is a physical way to measure autism the best way forward is to take into account multiple factors.

Not really masking. Masking is a compensation to pass.
One can be so stim needy, only to be trained on ABA or worse, with psychological issues -- you think someone like that has lesser support needs?

More like passing without the need to mask.


I can pass without masking.
I voluntarily do not mask.
I do not need masking to pass. I never 'trained' any autistic 'traits' out in order to pass. Never deliberately tried to hide if I "slip".

What I need instead is emotional regulation, not acting skills, go get around.

The ability to just ignore what I feel would've been awesome if I were willing to mask -- but autism is not what I want to 'hide', but whatever human shite I have that to manage due to my upbringing and circumstances.


So, if basing it the ability to mask -- I'd be a level 2+ because of whatever hardheaded I supposed to have.
And being internal sensitive than external based like most alexithymics do.

Passing? 1.5 or less.
Support level? 1.5 or less.

Gained Number Post Count (1).
Lose Time (n).

Lose more time here - Updates at least once a week.

I think it's impossible for assessors to know how much, how often, or how successfully people mask in order to make that determination. Masking can't be measured empirically so it would be judged by anecdotal evidence, which is dependent on the person's life experiences. There wouldn't be a consistent standard.

I'm Level 2 and I can't mask at all, or I suppose if I do it it's extremely bad. That wasn't measured in my assessment though.

Also, even though I'm reported to have significant need for support, masking wouldn't help any of that even if I knew how. How would masking allow me to tolerate painful sensory stimuli, for example?


* Just noticed APOM's answer.
That.

Masking is different than being able to function on a basic level and without support needs.

Masking specifically concerns social performance or at a stretch, performing tasks rather than doing them naturally, such as doing a basic care task whilst in a work environment, which one might struggle with otherwise whilst at home when time constraints and social pressure are removed from the equation.

I admitted to my long time Primary Care Physician that it was stressful making sure I didn't miss the doctor's appointment at the designated time. She said not to worry, just come in and she'd see me.

I won't be able to respond to every response, but I liked the idea of trying to combine masking and current support needs into perhaps two separate or a more fluid level of diagnostic assessment. I mean, I don't think I mask as much a as I've seen other people talk about (though I think some of that has to do with that I can't; I have a very poor ability to read facial expressions and body language both in others and in myself but somehow I get by anyway even though I don't understand how), but the distress I can still feel in social situations doesn't have to be less just because people so to speak, can't see I'm autistic. So that was the basis of my original thought. I think it's faulty to even begin to try to compare levels of distress since it completely depends on what you value in life to begin with.

Anyway, if support needs and masking levels are not sufficient for a more accurate assessment, then what alternatives are there? I also like the autism sphere/disc to help explain our struggles better, but even that one only goes so far I think.

https://hfsc.org/specialties/autism-center-at-hsc/
The Autism Center is a specialized interdisciplinary program for children and adolescents experiencing symptoms of Autism Spectrum Disorder (ASD). We work closely with your family to diagnose, assess and treat your child’s behavioral, medical and communication needs. As a family-based program, we help you understand and better fit into the world that your child is living in to create stronger bonds within your family.


This is what you really want. An integrated program that continues with assessment and treatment after diagnosis.
Working with as many specialists as needed to cover all aspects of medical care.

They are midway between Boston and NYC.
They got their start with Sports Medicine and have expanded their medical services.
I'm sure they make a lot of money off the wealthy who live within 100 miles.

The British have a healthcare system built around the NIH, the government provided services.
There are also private healthcare providers.
In the USA most folks are familiar with Medicare and Private Insurance.
Less well known are medical providers who don't take insurance.
They are highly competent professionals who work on a cash basis and get clients via referrrals.
This eliminates the need to work with insurance companies.

I liked this when I read it. Any thoughts?

Masking is just one factor in the autism world

Some autistics don’t even have the luxury to mask and would be the least of their problems

So no

Though it may not be directly related, I know there were some occasions where I was being told off for stimming by a teacher or lectrurer, that I was spending soo much effort trying to monitor my bodies every single move that I could not even take in any part of the lessons and this went on for months, if not longer!
I learned how to stim without being noticed. This was a type of masking my stims.
Eventually around my mid 40's I think it was, or before that, I eventually stopped stimming by concentrating all my mental efforts to sense every bit of what my body was doing over around a 10 year period of time which started around my mid 30's.

DO NOT EVER, EVER DO THIS! No matter who tells you to do this!

It resulted in me ending up with burnout after burnout (Or breakdown after breakdown? Never told doctors as did not know what it was or how to describe what was happening to me as could never put it into words) and it messed up my life for over 15 years. Had I known about these things back then and be educated about autism be I on the spectrum or not, I could have prevented myself from experiencing what happened. (Though I am greatful in a way that I now know and went through them as I can advise others and hope to prevent them from mentally crashing).

Yes, by all means learn more hidden less noticable ways to stim, but NEVER surpress your stims if you natrually tend to stim!

When stimming was mentioned on the i ternet and on this site, I didn't know what the term meant and had to ask. At first, I didn't relate, as since a young child onwards I was adapting my stims so they could not be seen! (I found if I taught myself to stop one stim, another type of stim would begin! I can trace the years I did terribly in school related to the teachers who would punish me for, or stop me stimming. I can relate to the years I dis well in school as I could almost freely stim! Is "Odd" to be honest, but it takes a LOT of mental effort to prevent a stim, and somehow masking also relates to this as one form of masking was to mask my stims by monitoring them and converting them into another stim instead!)
My Grandmother was funny. (I loved her but sometimes teased her, but didn't do it to be nasty. Was more my humour done in love!). She used to verbally stim. I would be driving the car up a very steep short bit of hill (1 in 4 with a blind bend just before which had a short straight 1 in 5 hill before and a blind bend before that) and I said "I will do 140 up here (MPH), which even in the car I was in at the time (Volvo T5) couldn't do much more than 40 in that short bit of climb even if I wanted to as one dare not risk doing much more than 25 round the corner before, so even a 225bhp car would strugble to accelerate much over 40-45 on such a gradient (The T5 would just spin its front wheels getting no-where if I tried! Hopeless at traction those cars were even with its traction control!) But my Grandmother sitting in the front passenger seat thought my little joke was serious and she clenched the seat and there she was verbally stimming away!
My Grandmother stimmed by saying tee-tee-tee type whisper words and things like that. She would be on the spectrum if assessed, and had a history of being on medication for her nurves. But no doctor linked the two, even right up into her old age! Yet it was obvious to me!

If you have ever watched the 1987 film "Housekeeping" Aunt Silvie was just like my Aunty, with a little of my Mum mixed in! (Though they were not quite as extreme!) My family were "Unusual" but in a fun, very exciting adventurous way!