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aquafelix
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04 Sep 2019, 7:14 am

https://www.thelancet.com/action/showPd ... %2930224-X

I just read this research study that I was really excited about. I'm not sure if it has already been discussed. It has to be the first scientific study I've seen specifically looking at people who have HS autism/aspie diagnosis but don't show symptoms in their behavioural presentation, but still have autism-related social-cognitive difficulties. This is the group who probably get the "you don't look like you have autism" response.

The paper explores the specific compensatory strategies that the high functioning group use to mask and disguise their autism in front of people and the benefits and costs of these strategies.

It's not a light read (it's a report of scientific study), but I found it well worth the effort.



Last edited by aquafelix on 04 Sep 2019, 8:34 am, edited 3 times in total.

magz
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04 Sep 2019, 7:16 am

Link not working.


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aquafelix
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04 Sep 2019, 7:21 am

I fixed the link. It should hopefully work now. Please tell me the link is still dead.



magz
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04 Sep 2019, 7:27 am

Now it works :) Thanks for posting, more comments after I read it.


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Fnord
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04 Sep 2019, 7:45 am

aquafelix wrote:
High Functioning Or High Masking?
It doesn't matter as long as the individual is a healthy, contributing member of society.


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04 Sep 2019, 7:49 am

What are they meaning by 'cognitive difficulties' in this research study ?


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Your neurodiverse (Aspie) score: 133 of 200
Your neurotypical (non-autistic) score: 47 of 200
You are very likely neurodiverse (Aspie)


aquafelix
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04 Sep 2019, 8:10 am

firemonkey wrote:
What are they meaning by 'cognitive difficulties' in this research study ?


I think they mean mental difficulties with processing and understanding social awareness and social communication



firemonkey
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04 Sep 2019, 8:15 am

^ Thank you .


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draconis.lignum
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02 Dec 2019, 2:25 am

Thank you for sharing this link. I am still learning and think this is a great read!


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02 Dec 2019, 6:05 am

I notice that the article doesn't enumerate the specific compensatory strategies used by the study participants; it just gives some examples and also makes the following general distinction:

Quote:
First, research has focused on shallow compensation, which reflects compensatory strategies (eg, mimicking others’ gestures) that are inflexible, prone to breakdown, and therefore not effective in all contexts. Such strategies enable one to disguise, but not necessarily overcome, social cognitive difficulties. However, it is likely other, more sophisticated strategies involving deep compensation exist, such as detail-focused analysis of social information,[4,21] which might allow a person to solve ToM and have fairly flexible social understanding, albeit via an atypical route.

Looking more closely, I see that the article says, "(see appendix pp 9–11 for list of strategies)."

Googling, I find what appears to be the full text of the article here. Poking around in the menu on the left side panel there, I finally found what appears to be the above-mentioned appendix. I'll read and comment later.

EDIT: I indeed found the list of strategies in the above-linked appendix, in "Supplementary Table 3. Description of strategies (Behavioural Masking, Shallow Compensation, Deep Compensation, Accommodation)."


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MattInMacc
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02 Dec 2019, 7:50 am

Fascinating piece of work, thanks for posting.


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quaker
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04 Dec 2019, 7:49 am

Thank you for this aquafelix,

In my role as an ambassador for the National Autistic Society these last ten years, I have fought to have these issues raised in the Lancet report so we can all be more informed.

As a person with HFA I grew up in an environment where being different was not so much frowned upon, but was simply not tolerated at all. I was systematically humiliated and abused for any expression of unusual-ness. My parents we're deeply wounded people and their projection of their own 'madness' (what they unconsciously deemed unacceptable within themselves) onto me was unrelenting and cruel.

This result of growing up in such a home environment where being "normal" at all cost was the goal, resulted in me being hospitalsed for eighteen months as a 15 year old. I wasn't hospitalised because I had autism, I was hospitalised because I was severely depressed as a result of my parents gross negligence.

As an adult, my greatest achievements (my adaptive skills) became the greatest impediment in my being able to have my autism recognised and getting the help I so desperately needed.

I am so pleased this report has come out, but more work needs to be done on educating people on how adaptive skills, born out of adversity can complicate and hinder getting a diagnosis.

Today I can say that I live a very different life. However, I have to work hard to communicate
my difficulties and what I need
when I am severely overwhelmed. My past overcomes me in such times, I feel ashamed, mad and not worthy of help let alone affection. Intigration and healing takes time. It is for this reason that I became a writer. Uable to put on the outside (facial expression) what I feel on the inside.

Growing up in such a chronically unsafe environment, I acquired the ability to read my parents moods and behaviour. I did this because my survival depended on it. I found a system of reading their facial expression out of sheer terror of being further humiliated and ostracised.

No words can come close to expressing the sadness I feel when I hear people in the autistic spectrum or "professionals" ignorantly expressing their opinions that if a person can be masking their natural expression so convincingly, they must therefore not be autistic.


Thanks again aquafelix,

Go well,

Chris



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04 Dec 2019, 10:58 am

I think if you have to be other than your real self to try and avoid disapproval/ fit in , that indicates you may very well not be NT.

However there are those of us,like myself , where there is little conscious awareness of doing the above. What that says about being on the spectrum, and either not masking or not recognising your masking, is something I wonder about .


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Joe90
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04 Dec 2019, 2:06 pm

I don't have to mask completely to fit in. A lot of what I do IS my real self. The only thing I have to mask is when I get offended by things that most people don't find offensive so obviously nobody would expect me to be offended. So if someone says something that makes me cringe or feel angry inside, I don't show it. I just give an appropriate reaction and move on (or post it on WP if I want a rant). That way everyone doesn't have to step on eggshells out of fear of offending me. I don't want people I love stepping on eggshells around me. So I suppose that's basically the only masking I have to do. And I suppose I have to mask more when in public places, which I find more exhausting than daily social interaction. When in crowds I have to force myself to mask the anger and irritation I feel with people, kids, noise, etc.

My symptoms of ASD are automatically masked without much effort, because a lot of symptoms are in my head (for example rigid thinking and constant chattering thoughts). I don't do socially unacceptable stims or talk excessively about a narrow interest or lack eye contact anyway even when I'm alone (well you don't need eye contact when alone but you know what I mean).


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05 Dec 2019, 1:08 am

High 'functioning' because of PIQ compensation and less stuff to deal with.

High blending thanks to PIQ translatable in behavior and movement despite having no real social drive.

Not high masking because why would I? Aside from not liking the idea of maintaining one, I already live in a tolerant culture. The only thing that may held me back into masking is guilt and I hate guilt.
If I can blend and even fit in without having to fake myself to make it, why bother masking at all? Especially if I have no 'standard' or even a consistent self-representation to start with?

If I'm high masking, then everyone else are on higher masking.


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