Deep Dive In-depth analysis of important topics in autism.
Illustration by
Alessandra Genualdo

The costs of camouflaging autism

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.

by  /  21 February 2018
illustration by:
Alessandra Genualdo

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.

"Camouflaging often develops as a natural adaptation strategy to navigate reality." Kajsa Igelström

Girls blend in:

Because so many more boys are diagnosed with autism than girls are, clinicians don’t always think of autism when they see girls who are quiet or appear to be struggling socially. William Mandy, a clinical psychologist in London, says he and his colleagues routinely used to see girls who had been shuffled from one agency or doctor to another, often misdiagnosed with other conditions. “Initially, we had no clue they needed help or support with autism,” he says.

Over time, Mandy and others began to suspect that autism looks different in girls. When they interviewed girls or women on the spectrum, they couldn’t always see signs of their autism but got glimmers of a phenomenon they call ‘camouflaging’ or ‘masking.’ In a few small studies starting in 2016, the researchers confirmed that, at least among women with high intelligence quotients (IQ), camouflaging is common. They also noted possible gender differences that help girls escape clinicians’ notice: Whereas boys with autism might be overactive or appear to misbehave, girls more often seem anxious or depressed.

Last year, a team of researchers in the United States extended that work. They visited several schoolyards during recess and observed interactions among 48 boys and 48 girls, aged 7 or 8 on average, half of each group diagnosed with autism. They discovered that girls with autism tend to stay close to the other girls, weaving in and out of their activities. By contrast, boys with autism tend to play by themselves, off to the side. Clinicians and teachers look for social isolation, among other things, to spot children on the spectrum. But this study revealed that by using that criterion alone, they would miss many girls with autism.

Typical girls and boys play differently, says Connie Kasari, a researcher at the University of California, Los Angeles, who co-led the study. While many boys are playing a sport, she says, girls are often talking and gossiping, and involved in intimate relationships. The typical girls in the study would flit from group to group, she says. The girls with autism appeared to be doing the same thing, but what was actually happening, the investigators learned, was different: The girls with autism were rejected repeatedly from the groups, but would persist or try to join another one. The scientists say these girls may be more motivated to fit in than the boys are, so they work harder at it.

Delaine Swearman, 38, says she wanted badly to fit in when she was about 10 or 11, but felt she was too different from the other girls in her school. She studied the girls she liked and concluded, “If I pretended to like everything they liked and to go along with everything, that maybe they would accept me,” she says. Her schoolmates were avid fans of the band New Kids on the Block. So Swearman, who says she had zero interest in the band, feigned a passion she did not feel. She made a few more friends, but felt she was never being herself. Swearman, like Jennifer, was not diagnosed until adulthood, when she was 30.

Even when teachers do flag girls for an autism evaluation, standard diagnostic measures may fail to pick up on their autism. For example, in a study last year, researchers looked at 114 boys and 114 girls with autism. They analyzed the children’s scores on the Autism Diagnostic Observation Schedule (ADOS) and on parent reports of autism traits and daily living skills, such as getting dressed. They found that even when the girls have ADOS scores similar to those of boys, they tend to be more severely impaired: The parents of girls included in the study had rated their daughters lower than the boys in terms of living skills and higher in terms of difficulties with social awareness and restricted interests or repetitive behaviors. The researchers say girls with less severe traits, especially those with high IQs, may not have scored high enough on the ADOS to be included in their sample in the first place.

These standard tests may miss many girls with autism because they were designed to detect the condition in boys, says lead researcher Allison Ratto, assistant professor at the Center for Autism Spectrum Disorders at Children’s National Health System in Washington, D.C. For instance, the tests screen for restricted interests, but clinicians may not recognize the restricted interests girls with autism have. Boys with autism tend to obsess about things such as taxis, maps or U.S. presidents, but girls on the spectrum are often drawn to animals, dolls or celebrities — interests that closely resemble those of their typical peers and so fly under the radar. “We may need to rethink our measures,” Ratto says, “and perhaps use them in combination with other measures.”

Behind the mask:

Before scientists can create better screening tools, they need to characterize camouflaging more precisely. A study last year established a working definition for the purpose of research: Camouflaging is the difference between how people seem in social contexts and what’s happening to them on the inside. If, for example, someone has intense autism traits but tends not to show it in her behavior, the disparity means she is camouflaging, says Meng-Chuan Lai, assistant professor of psychiatry at the University of Toronto in Canada, who worked on the study. The definition is necessarily broad, allowing for any effort to mask an autism feature, from suppressing repetitive behaviors known as stimming or talk about obsessive interests to pretending to follow a conversation or imitating neurotypical behavior.

To evaluate some of these methods, Mandy, Lai and their colleagues in the United Kingdom surveyed 55 women, 30 men and 7 individuals who are either transgender or ‘other’ gendered, all diagnosed with autism. They asked what motivates these individuals to mask their autism traits and what techniques they use to achieve their goal. Some of the participants reported that they camouflage in order to connect with friends, find a good job or meet a romantic partner. “Camouflaging well can land you a lucrative job,” Jennifer says. “It helps you get through social interaction without there being a spotlight on your behavior or a giant letter A on your chest.” Others said they camouflage to avoid punishment, to protect themselves from being shunned or attacked, or simply to be seen as ‘normal.’

“I actually got told by a couple of my teachers that I needed to have ‘quiet hands,’” says Katherine Lawrence, a 33-year-old woman with autism in the U.K. “So I had to resort to hiding my hands under the table and ensuring my foot-tapping and leg-jiggling remained out of sight as much as possible.” Lawrence, who was not diagnosed with autism until age 28, says she knew that otherwise, her classmates would think she was strange and her teachers would punish her for distracting others.

The adults in the survey described an imaginative store of tools they call upon in different situations to avoid pain and gain acceptance. If, for example, someone has trouble starting a conversation, she might practice smiling first, Lai says, or prepare jokes as an ice-breaker. Many women develop a repertoire of personas for different audiences. Jennifer says she studies other people’s behavior and learns gestures or phrases that, to her, seem to project confidence; she often practices in front of a mirror.

Before a job interview, she writes down the questions she thinks she will be asked, and then writes down and memorizes the answers. She has also committed to memory four anecdotes she can tell about how she met a challenging deadline. The survey found that women on the spectrum often create similar rules and scripts for themselves for having conversations. To avoid speaking too much about a restricted interest, they may rehearse stories about other topics. To hide the full extent of her anxiety when she is “shaking inside” because, say, an event is not starting on time, Swearman has prepared herself to say, “I’m upset right now. I can’t focus; I can’t talk to you right now.”

Some women say that, in particular, they put in a great deal of effort into disguising their stimming. “For many people, stimming may be a way to self-soothe, self-regulate and relieve anxiety, among other things,” Lai says. And yet these motions — which can include flapping hands, spinning, scratching and head-banging — can also readily ‘out’ these people as having autism.

Igelström and her colleagues interviewed 342 people, mostly women and a few transpeople, about camouflaging their stimming. Many of the participants had self-diagnosed, but 155 women have an official autism diagnosis. Nearly 80 percent of the participants had tried to implement strategies to make stimming less detectable, Igelström says. The most common method is redirecting their energy into less visible muscle movements, such as sucking and clenching their teeth or tensing and relaxing their thigh muscles. The majority also try to channel their need to stim into more socially acceptable movements, such as tapping a pen, doodling or playing with objects under the table. Many try to confine their stimming to times when they are alone or in a safe place, such as with family. Igelström found that a few individuals try to prevent stimming altogether by way of sheer will or by restraining themselves — by sitting on their hands, for example.

For Lawrence, her need to fidget with her hands, tap her foot or jiggle her leg feels too urgent to suppress. “I do it because if my brain doesn’t get frequent input from the respective body parts, it loses track of where in space that body part is,” she says. “It also helps me concentrate on what I am doing.”

"I will not hide who I am just to make neurotypical people more comfortable." Katherine Lawrence

Camouflaging costs:

All of these strategies call for considerable effort. Exhaustion was a near-universal response in the 2017 British survey: The adults interviewed described feeling utterly drained — mentally, physically and emotionally. One woman, Mandy says, explained that after camouflaging for any length of time, she needs to curl up in the fetal position to recover. Others said they feel their friendships are not real because they are based on a lie, increasing their sense of loneliness. And many said they have played so many roles to disguise themselves through the years that they have lost sight of their true identity.

Igelström says some of the women in her study told her that suppressing repetitive movements feels ‘unhealthy’ because the stimming helps them to regulate their emotions, sensory input or ability to focus. Camouflaging feels unhealthy for Lawrence, too. She has to spend so much effort to fit in, she says, that she has little physical energy for tasks such as housework, little mental energy for processing her thoughts and interactions, and poor control over her emotions. The combination tips her into a volatile state in which “I am more likely to experience a meltdown or shutdown,” she says.

Lawrence says that if she’d been diagnosed as a child, her mother might have understood her better. She might have also avoided a long history of depression and self-harm. “One of the main reasons I went down that route was because I knew I was different but didn’t know why — I was bullied quite badly at school,” she says.

The vast majority of women diagnosed later in life say that not knowing early on that they have autism hurt them. In a small 2016 study, Mandy and his colleagues interviewed 14 young women not diagnosed with autism until late adolescence or adulthood. Many described experiences of sexual abuse. They also said that, had their condition been known, they would have been less misunderstood and alienated at school. They might have also received much-needed support sooner.

Others might have benefited from knowing themselves better. Swearman completed a master’s degree to be a physician assistant, but ultimately stopped because of issues related to her autism. “I was actually very good at what I did,” she says. But “it was too much social pressure, too much sensory stimulation, a lot of miscommunication and misinterpretation between myself and supervisors, due to thinking differences.” It was only after she stopped working that her counselor suggested she might have autism. She read up on it and discovered, “Oh, my gosh, that’s me!” she recalls. It was a major turning point: Everything started to make sense.

It’s only after a diagnosis that a woman may ask, “Which parts of myself are an act and which parts of me have been hidden? What do I have that’s valuable inside myself that can’t be expressed because I’m constantly and automatically camouflaging my autistic traits?” Igelström says. “None of those questions can be processed without first getting diagnosed, or at least self-identify, and then replaying the past with this new insight. And for many women, this happens late in life after years of camouflaging in a very uncontrolled, destructive and subconscious way, with many mental-health problems as a consequence.”

A diagnosis leads some women to abandon camouflaging. “Realizing that I am not broken, that I simply have a different neurology from the majority of the population and that there is nothing wrong with me the way I am means that I will not hide who I am just to fit in or make neurotypical people more comfortable,” Lawrence says.

Others learn to make camouflaging work for them, mitigating its negative effects. They may use masking techniques when they first make a new connection, but over time become more authentically themselves. Those who feel that camouflaging is within their control can plan to give themselves breaks, from going to the bathroom for a few minutes to leaving an event early or forgoing it entirely. “I learned to take care of myself better,” Swearman says. “The strategy is self-awareness.”

Jennifer concedes that knowing about her autism earlier would have helped her, and yet she is “torn” about whether it would have been better. Because she didn’t have a diagnosis, she says, she also had no excuses. “I had to suck it up and deal. It was a really difficult struggle, and I made loads of mistakes — still do — but there was simply no choice,” she says. “If I had been labeled as autistic, maybe I wouldn’t have tried so hard and achieved all the things I’ve achieved.”

She has achieved a great deal. During our video chat that snowy afternoon in January, it’s clear that one of her most significant accomplishments has been finding a balance in life that works for her. Her camouflaging skills allow her to put on a warm, personable exterior, one that has helped her build a successful career. But thanks to a few friends and a husband and son who love her for who she is, she can let that mask drop when it becomes too heavy.


57 responses to “The costs of camouflaging autism”

  1. Planet Autism says:

    “This masking may explain at least in part why three to four times as many boys as girls are diagnosed with the condition.”

    That is true, the main reason is as this person says later in the article:

    “These standard tests may miss many girls with autism because they were designed to detect the condition in boys”

    There is no “may” about it. It’s blatantly obvious it’s the case. Research has even shown that autistic females have different differences in the brain than autistic males so why are we still relying on male-based tools?!

    Some females are also the Passive subtype ( Wing, L.) which means they are naturally much more subdued and internalising and physical masking may not be going on per se to any great degree, but inherent as part of their profile. Females are being so failed – when is this going to change?

    • ProfessorAlbee says:

      Hey Planet Autism:
      it is worth noting that according to renowned autism researcher Dr. Christopher Gillberg, there is no conclusive evidence that indicates that the ‘X’ chromosome influences the manifestation of autism.

      • Planet Autism says:

        Unsure of the relevance of your comment?

        • ProfessorAlbee says:

          Hey Planet Autism:
          Attached to this reply is the URL link to that article in the British Broadcasting Corporation from 28 June 2005. What the article expounds on is the under-diagnosis of autism in females.
          http://news.bbc.co.uk/2/hi/health/4630705.stm

          • Planet Autism says:

            Thanks @ProfessorAlbee. So what that article appears to be saying is that they didn’t find the genetic information in their research and as a hy-product of that research they realised females present differently. What is so sad, is that this was a 2005 article and we are 13 years down the line, girls are still grossly underdiagnosed, there is still a myth that there is a gender difference in ratio and we are still relying on male-researched clinical tools. What a tragedy.

          • ProfessorAlbee says:

            Excellent point, Planet Autism.

        • Nora Watts says:

          I’m not sure if this is his reason but one researcher called it the extreme male brain. Simon Baron-Cohen I believe. I, for one, aways wondered what that made me.

          • Planet Autism says:

            Well even in the “normal” population, people’s brains are oppositely gendered in some instances. I do think there is something in the extreme male brain theory but something niggles me, as if that is only part of the story.

  2. ProfessorAlbee says:

    Even though i am a forty-five year old high-functioning autistic man, i am able to attest that the antiquated characterization of autism as a ‘scourge’ that must be suppressed has always been extremely detrimental to the dignity of such individuals. i have always felt that as long as the quirks as exhibited – however innocently – by autistic individuals do not pose any discernible harm/threat to either others or themselves, such individuals MUST NOT be subject to ostracism (as well as marginalization). indeed, i am entirely convinced that American society is still not tolerant toward autistic individuals.

    • Carl O'Keeffe says:

      To coin a term used by the indoctrinated… Amen
      I don’t think any society can tolerate autism, or homosexualality or transgender etc, society is intolerant or differences in any form.

    • Chuck W. says:

      This is an ignorant comment. ABA therapy has helped many thousands of individuals control the symptoms of autism, leading to much greater acceptance, less bullying, and less social isolation. The earlier this is done, the better.

      • ProfessorAlbee says:

        Hey Chuck W.:
        I wholeheartedly understand the importance of early intervention for autistic individuals, but I strongly disagree with your characterization of my comment as ‘ignorant.’ Applied Behavioral Analysis IS NOT a ‘panacea.’ There are more innovative approaches that are designed to facilitate the ‘social integration’ of autistic individuals like the Davis Autism Approach, of which I have been undertaking for nearly one year.

      • david.mathers@ccc.ox.ac.uk says:

        Perhaps non-autistic people could also learn not to bully us? I mean, obviously, sometimes autism causes children to behave in anti-social ways, and then you can’t really *blame* other people for having a negative reaction. But people, and especially children when we are growing up, are often hostile towards us because we look or seem ‘odd’, even if nothing we are doing is remotely anti-social. Other children mocked me in the playground for public stimming (rocking back and forth) throughout my childhood, and there is no possible case that *I* was being anti-social.

        (For what’s it worth, and I’m not an expert, my understanding was the jury was still out in the scientific literature on the effectiveness of ABA).

  3. Carl O'Keeffe says:

    There are males, lots of males I would think who Chameleon or mask. I did and do, I find it interesting that gender assignments that are used by NT’s to play social roles are given to autistics, when we are often termed to have gender issues…. go figure

  4. AspieFengShui says:

    This resonates with me strongly as a late-diagnosed autistic who masks near-constantly. I feel sad as a woman who was diagnosed at 44 just a couple of years ago, in part because I lost my identity along the way while trying to conceal my ‘autisticness’ before I knew what it was. I am so exhausted and depressed from the trying and the inevitable ostracization that has followed. I am also disappointed that when I’ve shared my diagnosis with some friends, I have been told that I am wrong, that I can’t be autistic or that I am making excuses. Since I have two degrees and a good job I’m not sure what those excuses are for.

  5. Revenwyn says:

    So just to note that many of us women with autism did NOT have the usual girlish interests. Very early I abandoned trying to fit in with girls because they always pushed me away and it hurt. I went to play with boys, who seemed to accept me a LITTLE better (at least at times.) My best friend was a boy, I have since married him. My interests were swords, armor, chainmail, fantasy, and I was obsessed with ships for awhile. That said, I was homeschooled and I think I didn’t fully learn how to camouflage, and I think it may have been to my detriment as my traits are noticeable and I remain chronically unemployed/borderline disabled.

    Oh yes, and trichotillomania (compulsive hair-pulling) is my main stim but I know that I couldn’t keep a debate partner for long because of my leg jiggling.

    • Eating with hands says:

      Are you retarded? Nobody gives a shit about leg jiggling. Also, how are you so helpless you cant work? This is exactly why there is stigma around people like you. All you people do is freak out, get overstimulated, constantly have panic attacks and require resources without working to pay back society. Even people with down syndrome are productive. Fat, anxious and disabled is no way to live. Get your shit together or go to a live in center for retarded citizens.

    • Sigyn Sagadóttir says:

      Same here, that hurt does destroy a bit haha. Just sucked when you get “of age” at least for me, cause suddenly can’t be friends.

  6. AJ says:

    Listen,

    Because I saw this is trending…
    Girls have enough problem as it is, and constant fears of not fitting in or feeling normal. There’s no need to fill their heads with the unwarranted suspicion that they might be “on the spectrum” of the Autism boogeyman.

    What was the purpose of writing this vague, negative article? To make it clear that girls are as equal as boys in terms of mental deficiencies? I think we already knew that, and if a girl can hide her symptoms to fit in, more power to her.

    This “camouflaging” nonsense makes absolutely no sense. If a girl was genuinely Autistic, it would be obvious. What exactly are they “camouflaging”? Ticks such as foot tapping and leg jiggling are signs of Autism? Fricking please! Everyone I know must be Autistic because they all do that. One quote that stood out: “Camouflaging well can land you a lucrative job”. If the Autism was so severe that it was negatively impacting a girls’ life, how on God’s green earth could she land a high-stress job?

    And you describe the experience of being diagnosed as life changing? As if it’s better to label yourself as a defective and preach it to the whole world than to just try be freaking normal? At least pretending to be normal shows that they have functioning adaptation skills!

    Just to be clear, I’m not talking about obvious signs of Autism that are so severe a child can barely function (terribly sad and worth investing resources into), but vague symptoms of shyness or anxiety are now being diagnosed as Autism? When will people stop taking everything to the extreme? Leave girls alone.

    P.S.
    The illustrator’s pictures are ugly as FRICK and should be removed because my eyes are now bleeding after viewing them.

  7. Watch it guy says:

    So is autism just being bad at being social in face to face interactions? Or hell, even dreading them in a much deeper way? Being super bad at them, fearing them totally? Because I feel like that captures an extremely large percentage of people, and stigmatizing such a general condition as something medically problematic seems irresponsible – we may need to rethink autism.

  8. Rich Holmes says:

    Most research has focused on males only; it’s ALWAYS been a problem….at
    least in my lifetime. It’s only been fairly recently that some research
    has focused on females.
    Women have been commonly treated
    same as males [with treatments], yet more often than not, have been
    ridiculed out of ER’s because their heart attack symptoms are often
    different than men’s, or their other symptoms don’t match
    men’s…so…based on historic pedestal-dwelling, male-centric attitudes of Docs, male-focused
    research, etc., women often never got diagnosed, and/or, treated wrong. Often, still.
    This
    also applies to children, with assumptions that they merely need smaller
    doses of same drugs or treatments adults get…this egregious assumption is still
    terribly wrong, yet still perpetrated.
    Imho, there are
    LOADS more Autists who got through life never diagnosed, or worse,
    MIS-diagnosed with other mental issues, Because of the missed ASD DX.

    The mental illness might never
    have developed, had they beed properly diagnosed and treated while small
    children.
    Many who are currently in their 80’s, 90’s just
    “got-by”. In older times, they’d have been considered odd, eccentric,
    etc, and often accommodated fairly decently [IF the family had some
    money] allowed to be their “different” selves, often finding a viable
    niche.

    Others weren’t so “lucky”…got committed to the abysmal,
    draconian “mental institutes” that existed well-into the 1900’s.

    But, a Lifetime of camouflaging wears one out, makes one more
    vulnerable to other problems, most all of which cost everyone dearly to
    try remediating the fall-out/collateral damages, after-the-fact. Those who are “different”, are almost
    always bullied, commonly abused, and risk being misused. Have higher
    incidence of chronic ills develop over time; more likely to be at
    greater risk as they age-out of helps, if they ever gt any]; more at-risk
    as elders.
    The cost of humans repeatedly sinking back into
    common, unproductive choices and behaviors, will only make it harder.

    Society has much to learn about themselves as “normals”, from the
    tsunami of ASD sweeping the planet. Industries have much to learn from
    all this, too…Autists might really be helpful for industries willing
    to think outside standard ‘boxes’; industries that persist in funneling
    people into smaller boxes with fewer choices, will be the
    losers…echo-chambering, destroying commerce, vastly reducing real
    choices, endanger almost everything humans need to properly live.

    I can look back and understand there was a high level of Asperger’s
    happening in some of my siblings [never DX’d], parent [never DX’d], and
    self [never DX’d] and spouse [also never properly DX’d].

    One
    of our kids never got DX’d until late 20’s, because, though I knew it
    was a problem from about ge 2, if formally DX’d in the mid-1980’s, would, at that time, have utterly crippled any ability to
    mainstream and “have a life”. By helping that one to learn to cope, he lasted through 6 years in the Air Force…IF there had been
    accommodations and open understanding, there’d have been a full career
    there.

    As happened, though, things came to a major-meltdown/regression
    state, from which there has been little progress at recoveing the lost
    capabilities.
    Our other child waited til 40+ to have babies;
    the 1st of which was non-verbal still, at age 2, with other
    tell-behaviors. She didn’t want to hear me telling them that he
    appeared to have some amount of AsD. So, I convinced them that if
    they did nothing else, get speech therapy…signing, tap-tablet, verbal, whatever,
    so he could communicate, and so stop escalating bad behaviors
    triggered by being non-verbal during Early Childhood Development. [ya, it was “cute” at 2, but rapidly getting uglier as his size increased!] He was not DX’d until about 3 years later; if he had not already started getting speech therapy, he’d have been more deeply embedded with poor behaviors and worse learning problems. It’s helped him in context of today’s increased awareness and availabe helps.

    IF I knew then, what I learned later, perhaps life would have been
    better.

    BUT…one cannot separate what that diagnosis would have meant,
    if found at a given older TIME…1950’s could have meant several other layers of
    hell, for a kid who got that DX.

    So, I figure I was lucky to Not have been
    DX’d, learn to get by, put-up with abuses, bullying, learned to camouflage pretty well. I was lucky to have smart parents and grandparents, and generally, good teachers. And, we lived mostly rural-ish, which provided necessary quiet buffer zone.

    Nowdays, more are becoming open and aware; when I cross paths with
    those, it’s farely refreshing when they suddenly back-pedal on a started snarky
    comment, interupt themselves to say something like “you have
    ASD?” Their tone changes to a bit softer, perhaps a note of
    understanding.

    One less wannabe bullying comment. …Which begs questions into
    what makes a bully, and what helps them step-back from that?

    Maybe the real lessons have to do with finding our true humanity again;
    our commonalities, hearts, and compassion, rather than allowing media
    and industries to keep escalating divisions, conflicts and growing
    perceptions of differences?
    And, maybe we need to re-examine
    notions of what ASD is, since that terrible description of Autists,
    still seems to [poorly] describe Autists as deficient in ability to feel/have emotions….there couldn’t be
    anything further from truth! ~C

  9. Terry Mulcahy says:

    How in the world can a study have useful data when less than half of the participants are officially diagnosed? Many people, in the same way as medical students learning about diseases, feel they have a disease or condition they studied when they actually don’t. In the same way, the popularization of the characteristics of Aspergers (or high-functioning autism) has convinced many people that they are on that spectrum. Perhaps we all are to some degree (Honestly, I have suspected the same thing for myself). At any rate, far too many people in the stimming study were self-diagnosed for it to have useful information for understanding if the behavior is a result of autism, as I see it. In general, it seems there is a lot of vagueness about what autism actually is, unless an obvious inability to take care of oneself is noted.

    • Planet Autism says:

      Agree, the term self-diagnosed really irritates because there are other conditions that could superficially appear as ASD and not be. You can’t diagnose yourself because you aren’t a clinician and even if you are, you ethically still can’t diagnose yourself because you are completely biased.

  10. sandyernst says:

    Someone has pathologized existence, and called it a named disorder,
    wow…and now they are prescribing meth? Is that right?
    Dextro-methamphetamine and amphetamine salts? Adderall? Wow..I want in
    lol.

  11. sandyernst says:

    Someone has pathologized existence, and called it a named disorder,
    wow…and now they are prescribing meth? Is that right?
    Dextro-methamphetamine and amphetamine salts? Adderall? Wow..I want in
    lol.

  12. Chuck W. says:

    This article and letters are very wrong. “Masking” means therapy. With it, yu learn to stop annoying habits that distract the autistic person and makes people want to be around them. You also teach them social conventions. People want to fit in and be social, but if they are ridiculed and bullied then they withdraw and self-alienate. That hurts. Girls are naturally more gregarious than boys.

    • Planet Autism says:

      “Girls are naturally more gregarious than boys.”

      Untrue. Brought up with expectations to be more verbally communicative, does not equal gregarious by any means.

      • Aaron says:

        No, look at the psychological research on the Big Five:
        “A study of gender differences in 55 nations using the Big Five Inventory
        found that women tended to be somewhat higher than men in neuroticism,
        extraversion, agreeableness, and conscientiousness”.

        https://en.wikipedia.org/wiki/Big_Five_personality_traits

        • Planet Autism says:

          Neuroticism isn’t a positive trait! And can you not see the irony in that statement? If women are pressured to appear more extrovert, agreeable to others and conscientious, no wonder they are more neurotic!!!

  13. Peter Belanger says:

    As a 47 year old diagnosed autistic, I feel I have wasted my time on a label. Nobody seems to care at all about older autistics, all the help out there is for the child autistic. … No money in helping 40+ year olds in such a youth centric society, i guess.
    Anyway, I am also meaningless and insignificant also being male. This is a world for the females . males. no longer need apply. Old, male,…ugh, my life just needs to end now. I hate being the way I am, ‘autistic’, I wish i was “normal”, whatever that is.
    My life was a waste, born too early, wrong gender, wrong color, wrong everything. Why god? pfft, who am I even talking to? There is no god.

    • ProfessorAlbee says:

      I wholeheartedly understand your plight, Peter Belanger.

    • Planet Autism says:

      Absolutely agree about older autistic Peter. But absolutely disagree about your comments about males and females. Females are vastly underdiagnosed with ASD and the clinical tools used in assessments are entirely male-researched. Autistic females are often misdiagnosed with anxiety or BPD or depression. Autistic females are referred for assessment ten times less than males.

      • Peter Belanger says:

        The gender thing is really a separate issue. All the conflicting media messages on that issue have driven me a little bonkers. I grew up in the 70’s and it has honestly been a total roller-coaster since. I don’t know what I am or what i want anymore. maybe it’s autism, maybe it’s a side effect of autism, getting the media messages all mixed up, anyway it has left me feeling worthless as a male, we (in general) are just expected to tough it out on our own and the sensitivities of autism cause one’s gender to be ridiculed growing up as a male with autism.
        Tran? I no longer know, everyone is confused now. I am just tired of my existence now and want the psychological torture to stop.I hate our media culture and it’s confusing gibberish.
        People just want to toss pills at it. That I will never do.
        I just feel worthless.

        • Aaron says:

          I agree.
          This article is attempting to split Autism into male vs. female, but a disorder is a disorder. Yeah, it may manifest slightly differently between genders…
          But who cares? We need an entire article about it? I don’t think focusing on the gender differences really helps that much.
          I would also recommend taking a break from the mainstream media.
          You may not believe this, but God is real, he sees you, he knows your pain.
          Godspeed.

          • Peter Belanger says:

            There are a number of other articles attempting to split autism. Is this a gender support site or an autism support site? Do male autistics need to go elsewhere?

            Females get all the help and care and compassion while males get tossed out and told to be tough and “suck it up”.

            Everywhere I go, another girls-only club.

            God I hate being male. This is a world for the women only now. ugh.

          • Chuck Wintner says:

            Recently I went to an equine therapy course for CE credits. I was the only male. 25 women. Their various programs were called “Women’s empowerment with horse training;” “women helping women with…”
            Since the field of psychology became a political tool of the radical left, there are few men left. So now are we saying that scientific studies conducted by men aren’t valid for women? Are scientific studies by women therefore not valid for men? And here I thought if we were equal, that science was science. What do I know?

          • Planet Autism says:

            This seems to be turning into an anti-woman thread…

          • Planet Autism says:

            The autism articles about females have only very recently arisen (and it’s been a long time coming). The vast majority of their articles are about autism generally. But in every single article they seem to mention the alleged (but non existent in reality) gender disparity. I think you are feeling insecure and seeing bias that simply isn’t there. Females get no compassion as you claim, in comparison to men.

        • Planet Autism says:

          Well I was replying to your comment:

          “Anyway, I am also meaningless and insignificant also being male. This is a world for the females . males. no longer need apply. Old, male,…ugh, my life just needs to end now. ” which clearly makes it a gender thing. Females are in fact dismissed way more than males when they are autistic. “you can’t be autistic you’re a girl”, “girls don’t get autism” “you don’t look autistic” etc. and actually although this article is about masking, research has shown that autistic females mask more than autistic males.

          Anyway, remember you are not worthless. Make a list of all the good qualities you have and what that could mean to the world. Autistic doesn’t mean you can’t have dreams and goals to work towards.

    • Chuck Wintner says:

      There are plenty of resources available for autistic adults. Where do you live? What kind of help do you need?

      Your life is not a waste, Peter, even though it can feel like that at times. You’re not the wrong color, gender, or age. You are as significant and insignificant as every other individual. Don’t let the anti-male politics get you down. Truth will eventually prevail.

      http://mwkworks.com/desiderata.html

  14. Darwin_Lakota says:

    If anything, I think autism is more stigmatized today than when I was a kid. School kids nowadays use “autistic” as a go-to term like we used “special ed” or “retarded,” connotations and all. For the sake of functional people on the spectrum who want to and are able to fit in, I wish they would bring back “Aspergers” instead of saying a person is “on the spectrum” with severely impaired people.

  15. john smith says:

    I am the parent of a severely autistic son who is non-verbal, with debilitating behavioural issues. I find it annoying that so many people on the internet have appropriated the language of autism to describe what are nothing more than quirks of personality. Don’t get me wrong, I am socially awkward and eccentric myself. I have trouble recognising faces and sometimes I have to wait to hear people’s voice before I can recognise them. But there is simply a world of difference between my problems and his. He has a very real and pervasive condition and I don’t.

    There is nothing to be gained by pathologising this woman’s suffering in any medical sense. There is no medication that will help her and no therapies that will assist. I think the tendency to assign oneself autistic status has arisen mostly because of contemporary identity politics, where suffering doesnt exist or isn’t meaningful until it can be assigned to some category of political subjugation (race, gender, sexuality, disability).

    • Planet Autism says:

      You can’t understand someone else’s suffering until you have walked in their shoes. Let not there be a divide between what is termed as “low-functioning” and “high-functioning” when these terms are entire misnomers anyway. It really annoys me when people refer to high-functioning autistics as just quirky because they have no idea of the struggles someone goes through and make assumptions based on their IQ.

      “The “It’s Just a Difference” Delusion”
      https://planetautismblog.wordpress.com/2016/08/09/the-its-just-a-difference-delusion/

      “Why I hate functioning labels”
      https://thetudorsmakemetic.wordpress.com/2016/08/28/why-i-hate-functioning-levels/ https://uploads.disquscdn.com/images/1ae7a0a650c1141beaf609a772e6275e794b3a8d4007e205434adfef718107da.jpg

    • Sigyn Sagadóttir says:

      I wish there was a “quote” function in this forums, but if there is I can’t find it. Suffice to say, I agree to a multiple points, made. At the same time I can relate to you and this authors message. Although it’s hard to really say at this point what can be done to truly demonstrate what she is describing.

      I was tested for a myriad of conditions as a child, because I just didn’t “fit” one condition properly enough to be diagnosed it. I admit now, when I was little, my abusive father had terrified my of ever letting the doctors know, I wasn’t “normal”. He told me they’d throw me in a loony bin, and unlike jail there is no guaranteed release. So I learned quickly and sufficiently to at least change my quirks to avoid being labeled something specific.

      I know better now, and unfortunately it seems too late; due to this aggressive divide among people who get to decide and label the suffering and those whom suffer listening to those people keep changing the labels in some sort of caustic juggling act.

      Trying to provide the assistance to those who truly have impairment.
      Trying to prevent misuse and abuse the label, their specialized treatment, as well as assistance provided.
      And of course trying to prove the impact they can have for the good of society, along with proving that it’s not just “being quirky”.

      • john smith says:

        Thank you for that post and I agree. As a child, I was suspected of having high-functioning autism, schizoid personality disorder, avoidant personality disorder, generalised anxiety disorder and probably a couple of other things. I dont want to minimise anyone’s suffering, it is a hard life out there.

        I learned to get along as well. I affect interest in other people’s topics, and generally refrain from discussing my own with people I don’t know. I prep conversations before I have them, project my voice, remember to hold eye contact and always stop to ask if I am making sense, etc.

        Re alienated people on the internet diagnosing themselves with autism, the only good aspect of such a labeling exercise is that it gives people a sense of community, even if just in an online sense. But I don’t know that ever acts as a salve for very long. Its not really a functioning social circle.

        The autism label is really only a label of convenience even when it is properly applied. Even amongst children as severe as my son, there are profound differences. Some children are very rigid and will get upset if their parents use a different road to drive to school. Some have severe sensory issues. My son has neither of those things. His paediatrician said that there really isnt one disorder as such, but a group of disorders bunched under the one heading.

        Perhaps there needs to be a better label for those people who don’t suffer any of the symptoms of autism apart from social ineptitude and its related tics. I imagine if those people really had the care of someone with full-blown ASD, they might be a bit more reluctant to use the term in such a cavalier fashion.

        • Sigyn Sagadóttir says:

          I do understand the logic behind the bundling of conditions. Though I’ve often wondered if they were bootstrapped- I mean in those formative years, its quite easy to get a compounding affect. One behavior is unaccepted so it develops other behaviors until it become a neurological conflict destroying the minds ability to properly develop further.

          That aside, lol, I do know that I was physically “active” for a lack of a better term. They though I was epileptic. I got sick of all the hospitals, mri’s I adjusted to “hold” myself. This had the tragic consequence of physical beyond the will to live. I was hyper-aggressive due to it.

          Now I have a correlated identity to support all my weird tics. I got lucky. When I make meow noises, or make excessive gestures it’s because I’m more a character, and while this is definitely not a solution. I agree, it’s a good way to find people in hiding.Getting me to admit this to someone I don’t would be impossible outside of the internet. I already avoid talking, I can’t look at peoples faces, I don’t even see faces in my own head. But it helps the odd few, who have isolated themselves utterly from the world as I have my whole life. My foster parents are in great worry over me now, as they are nearing their end they seem to feel. They hope I can find work, but they really believe even now, that I can get help. Something I would normally have just avoided if I couldn’t do so from the comfort of behind a screen. :/

          Basically cost analysis, help a few, or risk helping no one?

          • john smith says:

            Absolutely, symptoms are “bootstrapped”. Social ineptitude leads to isolation, withdrawal and anxiety – and consequently, self-soothing and stimming behaviours like nail biting, hair pulling, leg jiggling and countless other tics. The very same behaviours manifest themselves in zoo animals once they are deprived of appropriate social functioning. That doesn’t mean that all those symptoms have a common cause or can be ascribed to the one condition.

            I do recognise that having that sense of community and belonging is a great support. Its certainly a better alternative to being ensnared in internet alt-right politics, which is where a lot of these alienated, white, downwardly mobile people with troubled childhoods would otherwise end up. However, for someone like my son, this is a permanent and undeniable aspect of his life. Its not just a hat that he can put on and then take off in a few years’ time as it suits him.

            Somewhat off-topic, but I think people are looking for the answer within themselves, when really these feelings of loneliness and alienation are a rational response to the economic conditions and insecurity caused by late-stage capitalism. Mark Fischer has written a lot along these lines. Politically, I often think that it would be more productive to realise that we all hold this in common, rather than walling ourselves off in our little internet fiefdoms.

            In terms of meow noises, etc, I don’t mean to presume, but given that you are young, remarkably attractive and work creatively (I googled your name, apologies if you are a different person) then I suspect to at least some degree having a quixotic personality is part of the package, in a performative sense. I don’t mean that as a critique, its simply a fact that we are all trying to find a niche in life. Given that traditional middle class existence has been hollowed out, young people in particular are having to work harder to find that niche.

            Which is fine, but its a complete world apart from what my son has to go through.

          • Sigyn Sagadóttir says:

            AHahaha, that’s amusing to me on so many levels. Ahh, indeeed the images you will have found are me, and thank you very much, no that is not my name. Haha, I took it on because I wished to change my life the usual spiel that you see in movies. Although I have found myself in the exact position I was in way back in my homeland.

            I will only state this small part as it’s truly unimportant in the overall, but I hate people, hate camera’s, and while you are no different than the average joe in believing I’m some sort of outgoing, or just a creative shy-being. And fact is, I wore all black everyday once I got into the first grade until I was a senior in high-school after a suicide attempt removal from the abusive home I said f*** all I had no idea I’d live this long. I have no plan, and everyone I know has abandoned me. Time I stop masking my crazy!(as I put it) I am tired of people thinking I’m normal and then getting disappointed when they get to know the real me. They see a monster, thfey’ll get one. And I have wore horns everywhere everyday since. 🙂 Best part- is it works!

            Meows were since I was little, I tend to eat standing or on the floor, I don’t look in mirrors as often as I can. Highly practiced in the art of staring right below the eyes. My foster parents will tell you that I have been finicky as they call it, and don’t ever try to pull a fast one on me. I will wage war lol. I have hurt people emotionally more times than I have every made them happy I’m sure. I can’t stop myself in a “debate”. Mostly because I feel the other person isn’t truly understanding what I’m trying to explain. I also lack empathy, although probably unrelated. I wouldn’t torture small animals either, so they said pyscho is out. In fact that’s what got me singled out to begin with, was my rationalizing of the misuse of innocence among children verses pets and animals. * I digress* I truly have got to end it here, this has gotten way too off topic I feel. I sad to see I still haven’t found any helpful info on getting help in this “spectrum”. 😀 *eye brow wiggle* eh?

    • Helen Gibbs says:

      I think the real error was lumping in ASD into a single category in DSM 5.
      As a neurodiverse adult with a formal diagnosis of dyslexia (at 15, in 1985) and an accurate but not formalised diagnosis of dyspraxia (in 1999 aged 29) diagnosis provided a framework for self management and advocacy.
      Subsequently I’ve ended up as an advocate on late diagnosis of adults with ASD and ADHD. When I start working with an adult we look at the purpose of a diagnosis and the potential costs/harms. For most adults a process of diagnosis is therapeutic as they reinterpret life course (we do a life course exercise if they are going for diagnosis so we can identify people who can verify persistent behavior).
      As with all major life changes there will be a period of grief associated with a diagnosis and I make sure that people understand and have safe ways of processing major anger which will arise.
      No one I’ve supported has regretted diagnosis. In some families I’ve had the privilege of providing support as family learn of the diagnosis and often it sparks for parents a new view of their siblings and the experience of parenting children who were different. Parents often carry guilt about failing their different child and my explaining that “autism wasn’t invented” when their kid was in school brings relief.
      Although autism can’t be medicated my own experience of neurodiversity has taught me that having a diagnosis will when you have something odd happen in relation to medication. My experience of needing to split dose my long acting SNRI antidepressant does not make any clinical or pharmokinetic sense, but the psychiatrist who suggested we split dose and stabilise my mood using the COCP had lots of experience in autism and said it was worth a try.
      Had I been undiagnosedi suspect Wed have been off down the mood stabiliser route with a bipolar 2 diagnosis….But it does take finding a clued up clinician.

  16. Claire Cameron says:

    Hi all, thanks for taking the time to read and comment on this article. I’d like to take the opportunity to remind everyone to read our comment guidelines before making a comment.
    Briefly, they are:
    – Be polite
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    – Be concise
    Here’s the link to the full explanation of our guidelines: https://live.spectrumnews.org/about/#commenting-guidelines
    Comments that contravene these guidelines may be moderated and could be deleted. If you would like further information, please email community@spectrumnews.org
    Thank you so much for helping us to maintain a safe and inclusive discussion forum, and thanks again for reading Spectrum!

    • Sigyn Sagadóttir says:

      I actually, interested in finding out information on the studies for this. I don’t have the fortune of great health insurance or anything so, I’ve been hoping to at least find a study to bridge the gap between self-diagnosis and clinical. That I might finally get help needed. Heh- it’s been very hard, to get proper aid, when you get so good at this camouflage. I’ve been denied a multitude of times, just because I look and seem “normal”.

  17. Flang says:

    I’m a 59-year-old male, and many elements of this article were so very familiar to me. Not here to fight or ride a hobbyhorse, just to affirm that masking behavior is real. It’s also exhausting, and the lack of communication/understanding that seems to go along with it can make parts of life hard: at times terrifying, depressing, super high stress, isolating, lonely, etc. I have no answers but am happy to see autism being studied. I feel like it’s too late for me, but not for following generations.

    • Chuck Wintner says:

      It’s never too late, Flang. I didn’t become a school psychologist until I was in my 50’s. I’d thought my life was over too. Turned out, it was just beginning. Keep the faith. We all “mask” our feelings to some degree. As T.S. Elliot put it, we “put on a face to meet the faces that we meet.” If we didn’t, we’d be killing each other even more than we already do.

  18. CheeseEdWest says:

    This is a fabulous piece that gives us a much needed look at what it’s like to suffer from undiagnosed autism. I would add two things. How about sharing your definition of just what autism is? What is the medical-biological context of the experience? How does it fit in the spectrum of learning disorders, and what are the range of neurological and other systems affected?

    Second is a key piece about the male-female ratio. You need to have an open mind to the science, because the media have brainwashed us to believe there is no biological link between mercury and autism. There are, however, literally hundreds of studies which have established this from not only an epidemiological but also on a biochemical level. Mercury is a highly potent neurotoxin, and its not a big leap to see it affect our nervous systems and brain. (See for example the works of Boyd Haley, MD, or the fine book by Kennedy, “Thimerosal: Let the Science Speak”) In a very basic way it makes sense: some individuals have a harder time clearing toxins from their system, whether it is mercury, glyphosate, aluminum, or others (and often a combination). Looking at mercury specifically, one specific mechanism has been identified. Testosterone, with higher levels in boys/men than girls/women, appears to make mercury more toxic by interfering with the body’s main natural detoxifier : glutathione.

    As our world grows more toxic–and Aluminum replaces Mercury as a metal of concern in vaccines–a basic health screen will have to move beyond a CBC to testing for glutathione levels and common environmental toxins, with tests that work for both boys and girls.

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