Welcome to the discussion

I wanted to share this for anyone like me who enjoys geeking out on autistic research. This site Autism in Adulthood features "research and scholarship on the most pressing issues affecting adults on the autism spectrum, from emerging adulthood to later life." and was mentioned by at least one of the researchers in the session "Data, Research and Evaluation" at last week's conference. I've quoted some of their stuff before as I follow some of the researchers on twitter. You can "Sign Up for TOC alerts" and they'll send periodic alerts about new articles - sometimes you can only read the summary without paying but its still pretty good if you're into that kind of thing.

One that I received recently was "A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice." I mean, wow...'the Narrative of Stigma and the Illusion of Choice' its all right there in the title.

One of the many things I found interesting in this one relates to a conversation we had recently on here: "We also argue against the idea that masking is a “female” thing that occurs as a result of there being a “female-specific” subtype of autism, because this might make it harder for some people to get a diagnosis (e.g., nonbinary people, and men and women who do not fit with any of the current criteria). Instead we argue that people need to recognize that autism does not look like one “type” of person, and try to separate ideas about masking from ideas about a person not fitting a stereotype."

I thought this was fascinating: "We hope that this analysis will help researchers to understand that some aspects of masking might be unique to autistic people, but some aspects might be like other kinds of “pretending to be normal” that other people who are socially excluded use to try and fit in." Fascinating because it sometimes seems like autistic people are the only ones not considered 'typical' when obviously there are many other groups to whom that could apply - imagine if everyone was able to be and act like themselves.

This next paragraph which relates to the medical model of disability seems to relate to another conversation the other day about trauma: "A diagnosis of autism is rooted in the specification that one must experience “significant impairment” to be classified as autistic. As such autistic “traits,” “behaviors,” and experiences cannot be labeled autism unless they are experienced negatively or are said to cause “impairment.” As a result, autistic people are viewed as being on the fringe of human normality both in academia, and in society in general. With a pathologized status comes the experience of stigma, dehumanization, and marginalization."

"stigma can manifest in negative social judgments toward autistic people who are more likely to report negative life experiences including bullying and victimization. Thus acknowledging the social context in which autistic ways of being are stigmatized and derided is essential for understanding reasons that masking may occur, and what can be done to reduce the pressure to mask and associated impact." I think stigma is probably the reason even some autistic people don't want to be associated with other autistic people.

These statements are fairly disturbing with regard to the cost of all this to autistic people: "A potential relationship between masking and negative outcomes such as autistic burnout and suicidality means that it is important that we acknowledge masking as a self-protective mechanism rather than a necessarily conscious choice."

"The further suppression of internal states and associated coping mechanisms (i.e., stimming) alongside an already present difficulty identifying one's own emotions could potentially be disastrous, leading to further long-term difficulties in mental health and well-being (i.e., burnout and suicidality)."

Masking seems to be the cause or at least a major factor in depression, anxiety, social anxiety and perhaps even more of the so called comorbid conditions autistic people have. I say so called because to me there should be a different name for the conditions that are 'hitchhiking' along with autism from birth and those conditions that develop as a result of being autistic in a non autistic world. The definition I've seen for comorbid is "existing simultaneously with and usually independently of another medical condition" so to me depression, anxiety, social anxiety should be called something else.

Personally for me I don't think I know how to act without masking. The idea that I should be nice, get along/go along with people, don't make a fuss, don't argue, etc has been ingrained in me to the extent that I get really anxious when I have to disagree with someone and I usually try to avoid that at all costs. But I can't always avoid it especially when 'going along' or 'being nice' to one person means being nasty to someone else. And even when it doesn't and I just go along with things I don't believe in, that also makes me anxious and then I have to get out of that situation too.

Ultimately I think masking is the cause or source of much of the ruminating that goes on in my head most of the time - what I did - what I should have done, what I said - what I should have said, what someone else said or did and what I should have said or done in response, on and on.

And now I'm recognizing that I'm still masking even when I'm with autistic people...the old habits kick in and I still don't know how to disagree with someone, still don't know how to respond appropriately without feeling like I'm vibrating inside, about to burst into tears, or having a panic attack.

But enough about me, I recommend reading the whole thing. It gets a little dense in the middle if you're not familiar with some of the terms which I'm not :) but then it gets into double empathy, more about the so called female autism profile, whether masking could be learned behaviour passed from parent to child...