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Opinion / Viewpoint

Women with autism hide complex struggles behind masks

by ,  /  20 September 2016
Editor's Note

We are aware that there are different views on whether ‘people with autism’ or ‘autistic people’ is the better way to refer to individuals on the spectrum. This article refers to ‘people with autism,’ in accordance with Spectrum‘s style.

The Experts:
Expert

William Mandy

Senior lecturer, University College London
Expert

Robyn Steward

Visiting research associate, University College London

Gwen is a creative, successful and intelligent young woman, making her way in the world as an artist. As a child, however, she wished to hide away and go unnoticed. From an early age, she felt different from other children, and worked hard to cover up parts of her personality by pretending to be ‘normal.’ An unhappy childhood gave way to an even harder adolescence, as she struggled to manage increasingly complex relationships with peers. (Gwen participated in our study; her name has been changed to protect her privacy.)

In her 20s, Gwen received treatment for anxiety and depression, and as she was helped to reflect on her experiences and feelings, it dawned on her that she might have autism. A psychologist validated her self-assessment with an official diagnosis, and Gwen’s life finally started to make sense to her.

She now understood why she found it so hard to get along with people at school and work, and whenever she noticed herself feeling overwhelmed in noisy, crowded shops, she realized that this was part of the sensory sensitivity that comes with autism. She now derives strength from her sense of belonging to the autism community, and is enjoying a growing sense of pride as a woman with autism.

Gwen’s story contains themes that other girls and women on the spectrum may recognize: Anxiety and alienation, the burden of trying to fit in, and challenges with social relationships. Like Gwen, many women with autism are diagnosed late in life. Others are misdiagnosed, or never come to clinical attention at all.

We sought to better understand the experiences of women with autism in hopes of finding ways to identify and help them early in life. In a study we published in July, we uncovered a signature for these women, defined by a high risk of sexual abuse, exhausting efforts at camouflage, and being continually misunderstood1. These features point to specific next steps for improving the quality of life for women with autism.

Literal language:

Most clinicians and members of the autism community agree that women with autism present differently from men with the condition. But studies that use clinical test scores and other metrics to investigate this discrepancy find few meaningful gender differences. Are the gender differences truly trivial, or are we missing them by failing to ask the right people the right questions?

To help solve this puzzle, we used an unconventional approach that involved paying careful attention to the experiences of women with autism. We interviewed 14 women with autism about their lives. We hoped that their words would give us insight into the subtle manifestations of autism in women that test scores cannot. Understanding these features should lead to better support for women on the spectrum, and help prevent them from feeling they have to hide.

Our study focused on women diagnosed with autism in adulthood. We reasoned that, compared with those diagnosed in childhood, these women’s experiences would be more likely to reveal how and why autism may be overlooked in girls. We also hoped that they could enhance our understanding of the costs of a missed diagnosis.

One of us (Robyn Steward) has autism, and her insight helped create the conditions for participants to express themselves. For example, we encouraged the interviewer to be more literal with her questions. This was especially important when we asked about sensitive topics, such as substance use and sex, where there’s a temptation to take refuge in abstract, indirect language.

Maps and prompts:

We made sure the interview room was free of sensory stimuli, such as loud noises or bright lights, that might agitate our participants. We prepared the women by sending out maps and photos of the interview room ahead of time.

If the women were still uncomfortable about an in-person conversation, we gave them the option of videoconferencing instead. And during the interview, we suggested using a timer as a visual prompt for when it was time to move from one question to the next.

Many of these adaptations would not have occurred to other members of the research team. We believe that they helped our participants open up and willingly share details of their lives. This may have led to richer data for our analyses than we would have had if the women had been nervous or reticent.

We encouraged the participants to raise topics even if we had not originally intended to discuss them. Then we used a technique for systematically coding verbal data, called framework analysis, to search these conversations for common themes.

Like Gwen, most participants had struggled emotionally in childhood and adolescence. Usually, doctors, teachers and parents mislabeled these difficulties as something else, such as anxiety, rudeness, awkwardness or depression.

Many participants felt that clinicians brushed off or ignored their concerns. Many professionals held unhelpful — and sometimes unrealistic — assumptions about autism. For example, some reportedly believed that autism hardly ever affects women.

One participant’s special education teacher told her she was “too poor at math” to have autism. Other women believed they were misunderstood because teachers and clinicians didn’t know anything about female-typical features of autism. Most said their lives would have been easier if their autism had been noticed earlier.

Social uncertainty:

Our findings suggest that teachers and clinicians need more information about how autism manifests in girls and women. They should know that even girls who have a close female friend or an interest in making friends could still have autism. And they should know that high levels of anxiety along with social difficulties in a girl is a potential sign of autism. All too often, these professionals instead misinterpret the considerable difficulties of these girls as simply ‘shyness.’

We found high rates of reported sexual abuse among our participants. This shocked the two neurotypical members of the research team, but not Steward. As an autism consultant working in education, social services and theater, Steward had heard a number of stories in which men had manipulated girls and women with autism.

The reasons for the abuse varied, but they all appeared to relate to the social difficulties of autism in the context of being female.

For instance, one woman linked an experience of sexual abuse to “not reading people to be able to tell if they’re being creepy.” Another said that her uncertainty about social rules meant that she was not sure whether she could say “no” to an abusive partner’s demands. Others felt that teenage social isolation meant they lacked opportunities to develop their ideas about staying safe through discussions with female friends.

We can’t provide a statistic on the prevalence of sexual victimization among women with autism based on our study. But our findings highlight a need for research in this area and strongly suggest that girls with autism should receive targeted sex education that includes information on consent and staying safe.

Secret identity:

Like Gwen, most of our participants are experts in pretending not to have autism — a phenomenon sometimes called ‘camouflaging.’ They said they wear a ‘mask’ or adopt a persona that is carefully constructed from copying the behavior of popular peers or fictional characters, or by studying psychology books.

Most of the women said they found the effort of passing as neurotypical to be exhausting and disorienting, and many thought it contributed to their delayed diagnosis. There are no tests for camouflaging, and this is a major barrier to clinicians and researchers understanding and helping women on the spectrum.

We need to develop a way to measure camouflaging so we can determine whether it is more common in women with autism than in men with the condition — as we suspect it is — and whether it has negative consequences, such as an increased risk of missed diagnosis. Such a measure could also be used clinically to improve the sensitivity of autism diagnostic assessments for girls and women.

Our findings raise wider moral questions. Until recently, many gay people felt forced to camouflage their sexuality. Thankfully, although homophobia is still rife, it is much less so than it used to be. We suggest a parallel with the obligation that many women with autism feel to pass as neurotypical.

The research and clinical establishment tends to measure progress by the number of evidence-based treatments available. In the case of autism, we propose a different metric: the extent to which societies allow people to live openly as individuals with autism, without having to pretend otherwise.

William Mandy is senior lecturer in clinical psychology at University College London. Robyn Steward is visiting research associate at the university.


References:
  1. Bargiela S. et al. J. Autism Dev. Disord. Epub ahead of print (2016) PubMed
  • Planet Autism

    As a female autistic with 2 autistic daughters, I can tell you that the daughter with more ‘obvious’ (potentially male) presentation was diagnosed more quickly. The other one and myself, who mask and mimic, were failed diagnostically and there were lengthy delays before diagnosis was finally reached for both of us. What I have experienced, is that whilst clinicians arrogantly claim to have expertise and understanding of female presentation, it is really not there. They may have read a page by Lorna Wing or something and think they know everything, what the differences in presentation are, but they are uniformly using male-based diagnostic tools and criteria all the same. Too many clinicians are relying on tick-box tools and instead of evaluating how the autism presents in the individual, they are looking to see how the individual matches the tick-boxes. And in the NHS, no matter how wrong a clinician gets it, no matter how much they breached NHS NICE or anything else (such as relying solely on the score of a clinical tool which only forms one part of the assessment), nobody will challenge them. There is no process to attribute diagnostic failure to incompetence or negligence in the NHS. Clinicians are always considered gods who cannot be questioned.

    • Cathy

      Tempted to comment, but I hesitate.

      If you come to a helping professional already assuming they’re incompetent or negligent it probably will affect the quality of care.

  • Cathy

    Part of that camouflaging is the “fake it til you make it” that we’re taught.

    For adolescent girls with autism, middle school and junior high can be brutal. I’m glad to see more attention for girls on the spectrum. Thank you! 🙂

  • irish in texas

    I have not found a single clinician in my state (TX) that has any clue what so ever about how women present. Even the neuropychologist(female) that tested me was using out dated information and did not believe I was autistic. Both times i was tested the clinicians decided i was on the mild end of the spectrum.
    Mild uh…Bull >#%£.
    There is not a single clinician that even treats women with ASD. The have plenty of experience with children but look totally clueless when I start trying to convey my thoughts etc.
    And what is this 20-30 being late in life. I was 53. I also know many many women who were discarded in life as being weird, strange, snobbish and every other word used to describe social misfits. They, as I, were bullied both physically and mentally growing up, Forever scarred. All were age 40-70 when diagnosed.
    Very few end up in a good relationship. Most are preyed upon by abusive people who seek us out as weak.
    The vast majority are and always will be single, never knowing what a true friend is or not knowing what it is like to have someone LOVE you.
    Many will not live out a natural life span. Loneliness, dispair, emotional exhaustion, eternal life as a discarded human all catch up,
    I understand this all too well and I find no fault in their action. I find fault with those NT’s who claim to be normal.
    I do not see a future where clinicians will recognize women with Autism, they will continue their self righteous backward ways, believing that they are just and wise, I CALL BULL >#%€ on everyone of them.

    • Tina TinaAnson

      I was in the Dallas/Fort Worth Metroplex, where one would THINK it would be easy to find someone for an assessment, when I was diagnosed at 43. It took 3 full days of phone calls, but I finally found a wonderful psychologist who assesses adults. Dr Alice Ruffel. She is now in Burleson, but is very open to distance sessions, she will work with you. I don’t know how far you are from Burleson, but she was a lifesaver.

  • Cathy

    “Fake it till you make it” doesn’t work.

    Middle school and junior high can be brutal. I’m glad to see more attention for girls on the spectrum. Thank you! 🙂

    • tahiti

      Exactly!, even in later age, Fake it till you make it’ doesn’t work, but we learn to ‘Fake it till we get exhausted, then need to
      go and hide’

  • I can relate, I’m a female artist as well. only diagnosed in 2013 (born 1981) and my all childhood/teens and even later adulthood was about trying to hard to not be myself, try to fit it, try to camouflage cause I felt weird, not right.

  • Emily Paige Ballou

    I think it’s also important to acknowledge many undiagnosed autistic girls and women *don’t* engage in camouflaging…we simply can’t; we can’t expend the energy to do it and also make it in school or work, or we just plain can’t. And when that’s the case, our challenges are often *still* mis-attributed to a variety of other issues (or selfishness, laziness, immaturity, over-sensitivity, etc.)

    • Tara N.Tula

      Yeah. My meltdowns were interpreted as over sensitivity and ‘female manipulation’ which also tied to how my school encouraged my sexual harassment. I’d start to cry when a certain guy would do stuff to me and it was interpreted as me encouraging him somehow.

      “Girls are always ready with the tears when they want something”

      Plus I was told I was misleading him when I was just trying to be his friend and that I gave him the ‘wrong idea’ by… talking to him. And shutting down and crying when he touched me.
      TBH part of all that shit might have been homophobia and an attempt to fix me by getting me together with a guy.

  • MLChadwick

    Is there are source of help for mothers of adult daughters? Mothers who–like everyone else–had no clue their beloved child was on the spectrum?

    My husband and I knew our firstborn was extremely anxious almost from birth; that she clung to childhood and feared the teen years; that despite all the help we knew to give, she couldn’t figure out how to exist among teens; that when she finally made a friend, it was the daughter of local hippies who handed out homegrown marijuana.

    We suffered, too. Our loving concern has always sort of bounced off her, and her remarks to us have so often been bewilderingly cruel.

    She’s now in her 40s. Last month, when I remarked that, in a selfie she’d posted, her eyes looked sad, she flew into a rage. She clearly had no concept that anyone could look at the photo and see sadness (really, serious depression). A few days earlier she’d talked to us for hours on the phone, as usual just reeling off her own concerns and not asking about us or empathizing, but–astonishingly–inviting us to live with her and her family. Then POW!, after the selfie incident she informed us that I had caused all her pain… past, present, future… She clearly has no clue that she made an instantaneous 180-degree turn, or that it stunned us.

    That was when I started to deduce why her adolescence was so tortured. The details fit every description of High Functioning autism in female that I’ve studied.

    She’s been seeing a therapist for several years. Now she’s shared with us that the therapist, told of her history of severe social anxiety and depression and her inability to mature socially, has informed her that only a “codependent mother” could cause these problems. Yet not one example of anything “codependent” that I’ve ever said and done has been specified. The supposed proof? Just our daughter’s painful years of social isolation in middle school, high school, and beyond. The remedy the therapist has encouraged? Roll up all her problems into a ball, label them “Mom,” and push me out of her life–SLAM!–whenever I make an “intrusive” comment like “Gee, you looked sad in that selfie. Are you OK?”

    Can any mother or adult daughter or clinician advise me how to communicate with an adult daughter who likely has HFA? I hope that both she and I can stop suffering.

    • mishspaz

      I could put you in touch with my mother…but it sounds like your daughter’s therapist is an idiot using outdated information that went out with Kanner’s theory on autism. Also…Neurotribes by Steve Silberman is a great read. AsperGirls is also wonderful, and was like reading about myself. My adolescence was no picnic either, but that wasn’t my mother’s fault–it was the bullies and neurotypical kids.

      • MLChadwick

        Thank you! I’ve just ordered both books. I deeply appreciate your kindness.

  • mishspaz

    I would really like to know how to get involved in these studies of autistic women, especially since my experience seems to mirror many that I’ve read about, and cited in my college papers. Autism does seem to run in my family, and while I am the oldest with with a diagnosis (that happened THIS YEAR) I wonder how far back it goes.

  • Judy Eaton

    Completely agree with all the comments and the research article. I am a clinician working in this area and specialise in women and girls with autism. Currently researching the area of mental health and women on the spectrum for a forthcoming book for Jessica Kingsley publishers and would love to hear from anyone willing to share their experiences. Please email on drjudyeaton@hotmail. Com. There is a great need to raise awareness amongst professionals.

  • tahiti

    I can definitely relate, I am an artist and diagnosed after 40. Early abuse, due to not being able to read rage or anger signals in parent in time, leading to scapegoating. School report : child of low capabilities, I flunked a lot of school but no one cared. Late teens, picked on with sexual and other attempted assaults due to not being able to read others (bad) intentions. Made bad friend choices. Up until diagnosis, in middle age, did only menial work and cleaning jobs, had repeated deep depressions and mini-mania’s, feeling cursed for not being able to understand the world or people around me, very fearful. Diagnosed with anxiety disorder and very low self esteem and Asperger’s. Painting was my refuge. Later, learning self-defense, learning about Asperger’s and how to manage and how others manage it. I learnt self- forgiveness, improved self-esteem and improved the reading, writing and verbal skills, and codes of social, in fact the ability to self teach (through practice and the internet) anything has been my saving.

  • Tina

    We need studies on people diagnosed after age 40 also. There are tons of us out here. Ask US what life was like undiagnosed through college, careers, relationships, caregivers for our elders, etc.

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