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The costs of camouflaging autism

AGXStarseed

Well-Known Member
(Not written by me. Please click the link at the bottom of the page to read the full article)


Many girls hide their autism, sometimes evading diagnosis well into adulthood. These efforts can help women on the spectrum socially and professionally, but they can also do serious harm.


Except for her family and closest friends, no one in Jennifer’s various circles knows that she is on the spectrum. Jennifer was not diagnosed with autism until she was 45 — and then only because she wanted confirmation of what she had figured out for herself over the previous decade. Most of her life, she says, she evaded a diagnosis by forcing herself to stop doing things her parents and others found strange or unacceptable. (For privacy reasons, Jennifer asked that we not use her last name.)

Over several weeks of emailing back and forth, Jennifer confides in me some of the tricks she uses to mask her autism — for example, staring at the spot between someone’s eyes instead of into their eyes, which makes her uncomfortable. But when we speak for the first time over video chat one Friday afternoon in January, I cannot pick up on any of these ploys.

She confesses to being anxious. “I didn’t put on my interview face,” she says. But her nervousness, too, is hidden — at least until she tells me that she is tapping her foot off camera and biting down on the chewing gum in her mouth. The only possible ‘tell’ I notice is that she gathers up hanks of her shoulder-length brown hair, pulls them back from her face and then lets them drop — over and over again.

In the course of more than an hour, Jennifer, a 48-year-old writer, describes the intense social and communication difficulties she experiences almost daily. She can express herself easily in writing, she says, but becomes disoriented during face-to-face communication. “The immediacy of the interaction messes with my processing,” she says.

“Am I making any sense at all?” she suddenly bursts out. She is, but often fears she is not.

To compensate, Jennifer says she practices how to act. Before attending a birthday party with her son, for example, she prepares herself to be “on,” correcting her posture and habitual fidgeting. She demonstrates for me how she sits up straight and becomes still. Her face takes on a pleasant and engaged expression, one she might adopt during conversation with another parent. To keep a dialogue going, she might drop in a few well-rehearsed catchphrases, such as “good grief” or “go big or go home.” “I feel if I do the nods, they won’t feel I’m uninterested,” she says.

Over the past few years, scientists have discovered that, like Jennifer, many women on the spectrum ‘camouflage’ the signs of their autism. This masking may explain at least in part why three to four times as many boys as girls are diagnosed with the condition. It might also account for why girls diagnosed young tend to show severe traits, and highly intelligent girls are often diagnosed late. (Men on the spectrum also camouflage, researchers have found, but not as commonly as women.)

Nearly everyone makes small adjustments to fit in better or conform to social norms, but camouflaging calls for constant and elaborate effort. It can help women with autism maintain their relationships and careers, but those gains often come at a heavy cost, including physical exhaustion and extreme anxiety.

“Camouflaging is often about a desperate and sometimes subconscious survival battle,” says Kajsa Igelström, assistant professor of neuroscience at Linköping University in Sweden. “And this is an important point, I think — that camouflaging often develops as a natural adaptation strategy to navigate reality,” she says. “For many women, it’s not until they get properly diagnosed, recognized and accepted that they can fully map out who they are.”

Even so, not all women who camouflage say they would have wanted to know about their autism earlier — and researchers acknowledge that the issue is fraught with complexities. Receiving a formal diagnosis often helps women understand themselves better and tap greater support, but some women say it comes with its own burdens, such as a stigmatizing label and lower expectations for achievement.


Full Article: https://spectrumnews.org/features/deep-dive/costs-camouflaging-autism/
 
Nearly everyone makes small adjustments to fit in better or conform to social norms, but camouflaging calls for constant and elaborate effort. It can help women with autism maintain their relationships and careers, but those gains often come at a heavy cost, including physical exhaustion and extreme anxiety.

Story of my current life.
 
Thank you, what an interesting article!

I have found that I actually experienced shutdowns only now; perhaps before I would have suppressed that until I was so exhausted I could barely move? Mistook it for low blood sugar? Certainly years of wearing myself down like a pencil eraser means I can't recover from it as fast.

Since realizing my Aspieness, I have changed my job, expanded my living quarters to give me more space and alone time, and not hesitated to avoid things I know will overstress me.

I have nothing to prove.
 
Someone needs to send this article to Nicholette Zeliadt, author of the article titled “Some Children May Truly Outgrow Autism”.

People used to believe that nightwing birds spontaneously spawned in the evening time, just because they couldn’t see the birds in the daytime, as they slept camouflaged on tree limbs.

Ms. Zeliadt is making the same assumption with autistics. “I can’t see them, so they must not exist!”
 
I definitely relate to this. I spent most of my life trying to figure out what was wrong with me and fix it, but even when autism finally occurred to me in my 20s as a thing I could have, most of the information back then said that women could have autistic symptoms but not autism/Asperger's so I ruled it out. Functionally I've been masking autistic symptoms all my life, but I've never known that's specifically what I was doing.
 
As I've said before, emulating being an NT is not the same as being NT and the person is in fact still autistic even if they don't meet the criteria for official diagnosis. Emulating uses a lot more energy and can be detrimental, especially over a long period. It is very worrying because autistic people can appear like they're "cured" and could even be officially "cured" after an alleged "treatment" because they no longer meet the official criteria for diagnosis when they are most definitely NOT "cured". This only proves that the whole diagnosis process is seriously flawed and can't be trusted in the first place which is in a lot of ways even more worrying.

What's just as bad is if it's possible for an autistic person not to be diagnosed as autistic, I also believe it's possible for an NT person to fake being autistic with emulation and be officially diagnosed, perhaps for personal gain, E.g. welfare benefit claims or even just to get attention. I know someone who is most definitely NOT autistic who later copied my background story and my traits, he acts as a totally different person now and is wrongfully claiming he is autistic while laughing at the benefit system in the UK, this kind of thing makes me sick and is making it much harder for genuine claimants who are often wrongfully thrown off their benefits, effectively being told that they're lying. This is the very same person who also claimed he was in the Royal Marines and a Chief Fire Officer who was apparently medically discharged, he would have been very convincing with his very detailed in depth stories of being in both professions, the problem was he was only 20 years old at the time when he first stated this which would have made him by far the youngest Chief Fire Officer ever in the UK and that's without the Royal Marines along with the different countries he apparently served in, yet he otherwise faked it so well that I suspect he even started convincing himself it was true. I believe he copied real people who he once knew that were truly in these professions, the same way as he's now pretending to be myself and is shockingly getting away with it, plus he is likely becoming better at it, realising his past flaws.
 
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I believe he copied real people who he once knew that were truly in these professions, the same way as he's now pretending to be myself and is shockingly getting away with it, plus he is likely becoming better at it, realising his past flaws.

A psychopath. I would stay far away. That's a rotten thing to be done to you.
 
(Not written by me. Please click the link at the bottom of the page to read the full article)


Many girls hide their autism, sometimes evading diagnosis well into adulthood. These efforts can help women on the spectrum socially and professionally, but they can also do serious harm.


Except for her family and closest friends, no one in Jennifer’s various circles knows that she is on the spectrum. Jennifer was not diagnosed with autism until she was 45 — and then only because she wanted confirmation of what she had figured out for herself over the previous decade. Most of her life, she says, she evaded a diagnosis by forcing herself to stop doing things her parents and others found strange or unacceptable. (For privacy reasons, Jennifer asked that we not use her last name.)

Over several weeks of emailing back and forth, Jennifer confides in me some of the tricks she uses to mask her autism — for example, staring at the spot between someone’s eyes instead of into their eyes, which makes her uncomfortable. But when we speak for the first time over video chat one Friday afternoon in January, I cannot pick up on any of these ploys.

She confesses to being anxious. “I didn’t put on my interview face,” she says. But her nervousness, too, is hidden — at least until she tells me that she is tapping her foot off camera and biting down on the chewing gum in her mouth. The only possible ‘tell’ I notice is that she gathers up hanks of her shoulder-length brown hair, pulls them back from her face and then lets them drop — over and over again.

In the course of more than an hour, Jennifer, a 48-year-old writer, describes the intense social and communication difficulties she experiences almost daily. She can express herself easily in writing, she says, but becomes disoriented during face-to-face communication. “The immediacy of the interaction messes with my processing,” she says.

“Am I making any sense at all?” she suddenly bursts out. She is, but often fears she is not.

To compensate, Jennifer says she practices how to act. Before attending a birthday party with her son, for example, she prepares herself to be “on,” correcting her posture and habitual fidgeting. She demonstrates for me how she sits up straight and becomes still. Her face takes on a pleasant and engaged expression, one she might adopt during conversation with another parent. To keep a dialogue going, she might drop in a few well-rehearsed catchphrases, such as “good grief” or “go big or go home.” “I feel if I do the nods, they won’t feel I’m uninterested,” she says.

Over the past few years, scientists have discovered that, like Jennifer, many women on the spectrum ‘camouflage’ the signs of their autism. This masking may explain at least in part why three to four times as many boys as girls are diagnosed with the condition. It might also account for why girls diagnosed young tend to show severe traits, and highly intelligent girls are often diagnosed late. (Men on the spectrum also camouflage, researchers have found, but not as commonly as women.)

Nearly everyone makes small adjustments to fit in better or conform to social norms, but camouflaging calls for constant and elaborate effort. It can help women with autism maintain their relationships and careers, but those gains often come at a heavy cost, including physical exhaustion and extreme anxiety.

“Camouflaging is often about a desperate and sometimes subconscious survival battle,” says Kajsa Igelström, assistant professor of neuroscience at Linköping University in Sweden. “And this is an important point, I think — that camouflaging often develops as a natural adaptation strategy to navigate reality,” she says. “For many women, it’s not until they get properly diagnosed, recognized and accepted that they can fully map out who they are.”

Even so, not all women who camouflage say they would have wanted to know about their autism earlier — and researchers acknowledge that the issue is fraught with complexities. Receiving a formal diagnosis often helps women understand themselves better and tap greater support, but some women say it comes with its own burdens, such as a stigmatizing label and lower expectations for achievement.


Full Article: https://spectrumnews.org/features/deep-dive/costs-camouflaging-autism/
 
wow alot of that describes my life! I was a child in the 70's and cos I was born with a rare condition everything was put down to that. We lived in a small rural village there weren't many 'special schools' local to us so I just went to the local village school and was expected to 'fit in' I was an only child for 6 yrs so had no one at home to copy until my next sibling got to an age they were talking and had natural social ability with making friends etc but there was a 6yr age gap between us so I was still years behind socially. I think my saving grace was my mum had taught me to read from a young age and I could read and remember everything. I also had some musical ability to reproduce anything I heard like tv theme tunes on a childs keyboard. This proved I must be able to learn so I stayed in mainstream school but struggled once moved up to secondary school.
I was always forced to 'fit in' and made to stay at the same school even though I was bullied really badly and hated school. I also had a fear of public speaking due to a stammer. At 16 I went deaf due to a new thyroid specialist changing my tablets. As I couldn't lip read I was moved to a deaf college and learnt to sign which I was fascinated with. I never had to speak in public again I just signed or wrote things down as the other deaf kids did! My hearing started recovering but I loved this college so didn't tell anyone and went on to university by using an interpreter (I'd learnt BSL by then) I got through 3 yrs of uni never speaking in class and doing any presentations in sign language with an interpreter 'voicing over'. I wouldn't have got a degree otherwise.

I learnt about Aspergers at university during a placement in my last year of Uni with some kids who had autism who used signing to communicate. They were at a deaf school but in a unit within the school for hearing children with language disorders (some kids had aphasia too) This was when I realised I might have it. I had a test later after I left university, the psychologist thought I had High Functioning Autism rather than Asperger's.

Another problem with a GP lowering my dose meant my hearing started fluctuating again and I was experiencing blurred vision, that went off thankfully but a few months later I started getting severe lower back pain then woke up one morning and could barely walk. I had to go to hospital for the MRI at this point. They thought it maybe an 'MS attack'. It turned out to be a form of Ataxia related to my thyroid problems. it was severe for many years but I was online by then and started researching myself. I found some things that helped but never regained full normal mobility (as it was before it started). I do feel sometimes I wish I could go back to that young person before she became deaf and had all the other issues, she's in here somewhere but seems to be lost under all the other health issues which people see first. She emerges when I'm home alone but when others are around I feel I have to be who they think I am (ie have to be deaf for people who knew me as a deaf person). I feel I've spent so many years 'camouflaging' my real issues to be more socially accepted that I've lost who I was and who I could have been and wonder where I'd be now if my autism had been realised in my teens and if the doctors had listened and not kept putting my dosage up and down over the years as that can't have helped my mental state either given that severe hypothyroidism can cause psychosis as well as physical issues.
 
I've read most of that site now on link given by OP and it explains alot for me about girls with autism and how they're sometimes not typical like boys with autism. Thanks for the link! :)
 

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