Struggles of Women Who Mask Their Autism
theatlantic.com
theatlantic.com
The examples of girls with autism trying to fit in with other girls was sad. I remember in middle school how my nerdy coed friend group got bullied for sitting together at lunch. The guys got called gay and the girls were shunned by other girls. There was a lot of explicit peer group pressure to only associate by gender. Fortunately most people grew out of this by high school.
Personally, I think I tended towards associating with males more often because I enjoyed competitive games (yugioh, magic, etc) and they were more likely to play. I always preferred hobbies with explicit rules to the comparative anarchy of navigating social circles. It's a shame that so many other girls get pressured by family and peers to avoid predominantly male social hobbies. I think they actually help improve self-confidence and create meaningful friendships far more easily for autistic folks than typical sleepovers or gossiping or whatever.
Our group is also (super male heavy) but very nice and in a more liberal area. It is a great to get out and be nerdy and give everyone a social thing where everyone has immediate common ground. Age 12-50. It really is cool. Not sure I had much of a point and I had already figured most of this out (we have a niece who is on the spectrum), but.. I didn't realize quite how deep it could go with the practice social things / mask. Being not so great at social things myself I just find it exhausting to do more normal social stuff, but I don't have to practice, I am just an introvert.
But ever since I left, I wonder if I've learned to conceal these behaviours to maintain the life and career I currently have. So the article kind of unnerves me, leaves me wondering I falling into the same mental traps described. Either that, or maybe I've learned to manage by behaviour in a different way. Self knowledge is a fickle thing.
But did they?
I'm living in Sweden. The cultural elite and the whole country behaves like a insecure high-school class where everyone is anxiously watching what everyone else is doing, what's 'right' and what's 'out'.
We are extremely conformist.
The topic of immigration and integration is obvious, but also extreme feminism, environmental issues is on the list.
People even dress the same.
As soon as this behaviour expectation is broken, you'd probably not consider them 'real' friends.
tinyegg, I think it was an exemplary and inspirational action, and I hope your seed of courage bears fruit. Although it might be practical to add contact info to your profile :)
My daughter was diagnosed severe/non-verbale at age 3. If this woman is able to live a life such as this and able to use the bathroom, have a job, etc I'm hopeful of at least that for my daughter. It gives me hope. But I've met parents of children who are much much worse.
Something must be done to change this narrative that Autism isn't curable. The stigma certainly doesn't help either.
I'm not very hopeful that it will ever be fully "curable", though maybe I'll be proven wrong. If we could at least medically correct for the overstimulation and hypersensitivity aspects, it would be such a huge win. I strongly believe the most negative and impairing parts of autism stem from this part. The people who are "merely" socially awkward often hide these aspects or avoid situations that would trigger them (ex: I carry ear plugs on my keychain because street noise or crowds in restaurants can be overwhelming, and I don't do tech conferences any more for the same reason). The more severe amongst us unfortunately usually need more than muffled sound to feel in control.
That said, I do think there are ways of coping, tools, practices, that will make life for autistic people much better going forward. We need to keep researching those just as much a cure or pregnancy-time diagnosis. I hope things do get better for both you and your daughter.
Give her Dha and a multivitamin with more bioavailable forms of each vitamin or a whole food vitamin. My daughter will take these along with greens and fruit in smoothie form. Basically, do everything you can.
As an autistic person I don't think it's curable, nor do I think it's something that I would want cured. The impression I get is that my brain is just wired differently from allistic people, 'curing' me would basically mean replacing me with someone else.
Visit a group home and it's one of the hardest areas to see. Young autistic adults incessantly masterbating, covered in bruises, unable to use a bathroom etc. Yet they are still intelligent and are self-aware. That to me is the hardest pill to swallow.
Right now treatments are being tested with umbilical cord tissue originated stem cells that are extremely promising. My daughter participated at one study at Duke and went from 0 words to a little over 100. Her ATEC score dropped from 120+ to around 70. However I fear this valuable research will die if we start normalizing autism or other mental illness as something we just 'deal with'
I've read Neurotribes and I can understand the argument but there's rehabilitation and I think the metaphor around a prosthesis is very accurate.
Of course we support medical research and treatment to improve functioning, especially for severe cases. That's not what a cure is though. A cure is becoming a fundamentally a different person. Or if some folks get their wish, it's pre-natal detection of autism so parents can prevent autistics from being born at all. We don't want to normalize autism to prevent treatment, we want to normalize it enough so that we don't get written off as valueless people not worthy of being born.
I truly believe that every person with autism would vastly prefer being able to live independently. Science needs to find a "mechanism of action" for autism before it would be possible to find a "cure", which means people with autism being subjected to medical research. (Have you ever tried to get a person with autism to lie still in a MRI?) In the meantime, the best standard of care is to teach strategies to help them live as independent a life as possible -- and to teach these strategies in a caring and humane way.
For what it's worth, psychiatrists are doctors, and therefore covered under the single-payer health care in Canada. If you live in the United States, consider whether moving north could be beneficial for your daughter. (If she has friends at school, though, I would avoid moving her.)
A thing I heard is that you can't cure many mental illnesses, much like you often can't cure a missing limb. But if you find the right prosthetic your life can become much better.
I hope we can find this for more and more people on the spectrum.
Its very manageable though, and depending on where on the spectrum you are there still a chance for a completely normal life.
I think the stigma is strong because the people that are "highly functional" enough to hide it, will. No one at my workplace knows that i have it and just think im a tad weird. I think i prefer not to tell anyone since it might make colleagues doubt my performance and abilities, or make it harder for me getting job next time.
I wish I had gotten that diagnosis earlier, because it makes it a lot easier to explain to people how I am different.
I am not sure if I would call it covering it up, but a lot of my social skills are the result of a very conscious cognitive learning process. By now it is fairly automatic, but on a not-so-good day I tend to avoid eye contact and communication in general. Writing, strangely is much, much easier. On the upside, I managed to - partly - turn this to my advantage by making a point of being explicitly polite to people.
To me, eye contact gets harder if I have to focus. Greeting people or answering simple tech-support questions is not a big deal, but when I have to explain - or listen to! - something moderately complex, eye contact becomes difficult.
I suspect the phenomenon is related to the Clippy-disaster with MS Office; recognizing faces takes a lot of brain power, and the human brain allocates a significant chunk to that specific task (at least that is what a neurologist once told me). Somebody wrote a Master's thesis or Ph.D. thesis in psychology about why Clippy was hated so much, and it was basically because face-like things at the margin of our field of vision take up a lot of "bandwidth" in the brain and thus distract from other things.
I am happy for you, then. As long as it does not make you unhappy, there is no need to put a label on it.
> I'm afraid I'd turn it into a victim complex if I were to get a diagnosis.
To me, it was bit of a relief, actually. It means that - to a degree - I can be more comfortable with who I am rather than try to be somebody I am not. OTOH, I have been suffering from a recurring depression that I now suspect is intimately intertwined with my condition.
My daughter was diagnosed at sixteen after two years of missed school and barely leaving the house due to incredibly high anxiety. Oh, and the first time she was assessed eighteen months prior she was only "borderline" aspie even though in retrospect she has been effected much more profoundly. (She also had a similar speech delay when she was younger too, btw.)
We need to get a lot better at recognising the condition in girls, as we have with boys.
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If you are wanting to know more about autism in all its flavours, google for just about anything by Tony Attwood. In more recent years he has been concentrating more on autism in women, so adding "women" to your search terms will surface specific material in that regard.
- https://autismwomensnetwork.org/motherhood-autistic-parentin...
- https://www.thestar.com/news/investigations/2012/11/17/the_a...
- https://www.theguardian.com/lifeandstyle/2017/apr/15/women-a...
- http://network.autism.org.uk/knowledge/insight-opinion/autis...
- https://www.theatlantic.com/health/archive/2017/05/autism-pa...
- http://web.archive.org/web/20160313002827/http://www.backfro... (and its HN thread: https://news.ycombinator.com/item?id=9245022)
Her kids seem to have automatically adjusted to her condition, being more vocal when they need something, or something is wrong (otherwise she wouldn't know).
The movie "Snow Cake" does a pretty good job describing some of the challenges.
Does anyone know if there are courses one can take to learn how to recognize and produce correct body language?
The facial expressions usually give away the situation. The downside is that you need to constantly read the other parties expressions, and that can get noticed if you're not subtle enough.
It required some energy, but over time you get proficient at it.
Another thing that will help is to find safe topics. Talking about music, girls, sports are the easiest to learn.
My advice would be not to shy away from social interactions. Practice makes perfect.
Some people may inherently be born with an intuition to handle social interactions, but that doesn't mean that you cannot learn it by observing and mimicking.
I guess this is what the article calls as masking. But masking doesn't have to be that painful. i believe people can grow and chance. If you put an honest effort you'll eventually fit into the society.
Ironically, I have gotten so good at this that I sometimes get annoyed when a person I am talking to acts “weird”.
I feel “lucky” in that I’m not too far off from normal, whatever that is, on the spectrum. But I still find it exhausting and depressing, like they do. I have also had the feeling that certain friendships and relationships are fake because I act differently to who I am when around those people. I don’t feel that anyone at work really knows me. I don’t think it is worth trying to be yourself at work, even disregarding the spectrum stuff.
The bit about the difficulties with diagnosing autism in women is also interesting. There are many similar situations in regard to mental health, for example women are diagnosed as borderline much more often.
I only got to know fun with people in various subcultures, and the more off people around me were, by looks or by spirits, the less I needed to worry about fitting in and learned to simply enjoy myself.
Until I realized what the actual problem was. Most people tend to make life hard for themselves by needing to fit in and pretending and aspiring. It's okay. Let go and drop your misery and do whatever the hell you happen to think is best.
If you want to build a UFO and take over the world, please go do it. Autism is a terrible name for whatever slight - or not so slight - imbalance of mental traits, and seeing the shit that regular people mutter you're probably better than that anyway - because you wouldn't believe what an autist's mental hygiene is like.
I would like to point out that autism is an actual specified condition. Being socially different or feeling inept about social situations does not put you on the autistic spectrum.
In some ways it’s incredibly insulting to imply that any discomfort in social settings is a sign of autism. Not least because is implies that autistic people can’t be capable, extroverted and able in social settings, which they absolutely can be.
It would be nice if the article provided more detail on the actual condition, the tests for it, and how it differs from the common 'i am a human' anxiety. Virtually everyone, men included, has experienced the same things that the article describes as being experienced by women with autism.
I think there is a risk with these sorts of articles that many people will make a lot of unwarranted assumptions about other peoples' abilities and behaviors.
Regarding subgroups, I found that they were just as unaccepting, they just have different standards for who/what is in/out.
I think your comment about autism is mistaking the cart for the horse. This happens because people are on the spectrum, not people are autistic because sometimes they don't fit in.
Lastly, I'd just like to mention that I didn't mean to only talk about school or work or situations like that, where there is always going to be some amount of difficulty fitting in. I could also tell that people very close to me, like my parents, thought something was off about me. They later copped to that when I was an adult, as well as their relief that I turned out to live a pretty normal life.
Isn't this how everyone learns social skills? Maybe for you (and me) this just occurs a little later in life than most.
Every conversation I have I run every input someone says through a decision tree to determine what the appropriate response is. I do this in my conscious mind. I didn't realize this wasn't normal until much later in life.
Unless you're displaying a caricature of "happy" or "sad" emotional expressions I have no idea what your emotional state is. I'm completely blind to it. I have to consciously analyze the shape of your mouth, where your eyebrows are, compare it to the context, etc. to try to determine your emotional state.
Not only am I blind to other peoples' nonverbal communication I don't express my own naturally. Every emotion I express through non-verbal means is largely "acting" on my part. I have to consciously make my expressions match my emotional state.
My anecdote may not match exactly what another person's with autism, but that's the kind of difference that's meant by doing things "automatically."
Yeah, but it doesn't require the same amount of effort from everyone, and neurotypical children will eventually get it. It takes an order of magnitude more effort for children with ASD and in the most extreme cases, they simply can't.
It's like red/green colorblindness - some afflicted eventually manage to tell the difference between the same shade of grey, but for normal sighted people, the number inside the circle of colored dots is blatant and obvious, and requires no studying of the picture.
There are children with ASD that are highly-functioning and if they manage to get good grades, it's possible for them to escape notice. However, there are those for whom social situations simply don't make sense, and no amount of effort, self awareness, or peer feedback can enlighten them.
Especially things like smiling or crying to get something (depending on circumstances) etc - they do it before they have logic and before they have ability to plan. Two years old has tendency to do stuff adults around find cute and react to, but it is not conscious plan. Autistic kid won't or will to lesser extend.
It's kinda shitty to imply that someone is lying or delusional because their lived experience doesn't match with yours. There's plenty of literature on how autistic people learn socialization and how it differs from neurotypicals.
http://www.sakkyndig.com/psykologi/artvit/skodol2003.pdf [2003]
Cluster B is the over all group which has Borderline, Narcissistic, Histrionic, and Anti Social (aka Psychopaths) personality disorders.
https://thelastpsychiatrist.com/2007/10/the_diagnosis_of_bor...
That article is interesting, in that it seems that the professionals have issues separating out the conditions.
At least 2 of the cases in linked article were more likely Narcissists, that borderlines.
I've dealt with borderlines, Narcissists and Histrionics, in a professional setting over the years, and they are pretty easy for me to spot now.
Why are you going so hard on what is essentially the messenger? I don't have beef with you. I don't even have a horse in this race. I just googled a question for someone else. Maybe consider emailing the authors, since you have some serious disagreements with the paper.
Any time a question is asked about 'why are men and women different in regards to x', you'll have people lining up (like yourself and other commenters in this thread) to say it's gender bias. When the answer is often just because men and women have differences, which is exactly what the evidence points to in this case.
By your own admission, with 5 seconds of googling, and 0 knowledge on the topic, you submitted a comment attributing this to gender bias. If you don’t want your comments to be scrutinized by others, then perhaps don’t post them on public forums...
Discussion is the point of the comment section, and the limit of the discussion you’re willing to participate in is “I posted a random study from Google along with some of my own commentary, that I’m not prepared to defend in any manner whatsoever”.
Not that I think there's no scientific process in evaluation, but if the only subjects with major expression are primarily one gender, it seems like it would create a kind of confirmation bias?
Articles like this annoy the hell out of me, because it implies that men with Autism have it better somehow.
I would argue that society is WAY more forgiving of "strange" women than it is towards men of a similar strange level.
This coming from a guy married to a high functioning ASD woman.
Yes it's very draining in some cases, but at least they can hold down a job, and function as a "normal" adult for the most part. On top of that people and employers are more than willing to make all the required accommodations when asked.
I work in engineering / IT as well as being a geek so I run into ASD guys pretty much daily and they get no accommodations and are usually brute forced into complying with the required norms, or they get fired.
Even the most simple accommodations like a bit of work hour flexibly and working from home are not even entertained in most cases.
They stick them in open plan offices, 8am to 6pm and brute force social interaction on them which is the opposite of what they need.
I do know a few other female ASD people, and they themselves acknowledge that they get way better treatment and help then their ASD male friends.
I’m at a loss as to why you would say that the article claims that when it claims nothing of the sort. (In fact, it explicitly notes that the phenomenon that is the central theme of the article—which is not autism being “hard”—is found in both sexes, but more commonly with women than men.)
Also, I'm certain that there are male autistics who manifest their symptoms in the more stereotypically "female" way (ie, quiet, shy, reserved, good at masking), and by educating people on the different ways that autism presents itself, we can help those people get proper diagnoses and support as well.
A statistically higher percentage of them, anyway, let's not count your crazy ex here.
Is that because you like smart girls? Or is it they'd understand you better as a geek?