Hiding in Plain Sight: Diagnosis Barriers for Autistic Women and Girls

Boys are five times more likely to be diagnosed on the autism spectrum than girls. It’s easy to look at that statistic and assume that autism is more prevalent in males. But what if it’s simply diagnosed more often? The high frequency of late-diagnosed autism in adult women suggests that it’s more common in females than the childhood diagnosis rates imply.

A woman's face peers out from behind multicolored foliage.Many autistic women don’t receive a diagnosis until they reach middle age. Those of us who are being diagnosed today in mid-life grew up during a time when Asperger’s was not yet an available diagnosis in the DSM. By the time we reached adulthood, we’d often mastered basic social skills, masking many of our autistic traits. It’s not until we learn about autism–often by chance, sometimes as part of researching a son or daughter’s diagnosis–that we have an aha! moment. Armed with our research, we set out on the road to confirming our suspicions, and eventually join the ranks of the late-diagnosed. That was my experience and I think it’s become the apocryphal late-diagnosis story.

Surprisingly, though, I’ve discovered that young women in their teens and twenties are often no better served than their mother’s generation when it comes to getting diagnosed. A system that is supposedly much better equipped to screen for autism than it was decades ago is still overlooking autistic girls.

Ellie, who was recently diagnosed at 19, first recognized autistic traits in herself at age 16:

“It took a considerable amount of work on my part to first get my parents agree to let me be diagnosed and second find a professional that worked with autistic people other than children.”

She finally obtained a diagnosis from a child-specialist who agreed to make an exception to the practice’s age cap of 18.

Other young women are less fortunate. Emily relates a string of missed opportunities that have resulted in her being without an official diagnosis at 26:

“As a kid, my first child psychologist was a barrier to diagnosis, as she felt that only boys got ASD and refused to refer me to a developmental psychologist. I was screened for ASD every year in my schooling and referred by the school for further testing every single year–referrals my parents blocked.” 

Now, as an adult, the primary barrier to diagnosis is the high cost of a private evaluation.

In fact, one of the most commonly cited reasons for not getting diagnosed as an adult is the prohibitive cost of an autism evaluation, which can range from $1500 to $3000 or more in the US. While some women are successful in obtaining a formal or informal ASD diagnosis in the course of therapy, others eventually give up in frustration, often losing faith in the mental health system in the process.

Missed Diagnosis or Intentionally Shut Out?

There is a widely held belief that many women are simply “missed” by the mental health system because they’re more likely to develop compensatory strategies early in life. Ellie recalls how she was:

“constantly corrected from a young age–usually in terms of it not being ‘lady-like’ or being too aggressive or not being nice or polite enough.”

As a result, she says she started mapping out:
 

“correct” behavior early and in detail. “The types of behavior demanded were often that I be unnoticeable or compliant and this led to me learning how to downplay my autistic personality traits well.”

She attributes years spent in Summer Theater programs for her ability to project a persona in social situations, whereby further masking her autistic characteristics.

Many women have similar memories of childhood–either of being explicitly taught social rules or of learning to model the social behaviors of peers. Growing into adulthood, we often learn to hide in plain sight, suppressing our more obvious autistic traits while going through our days feeling as if we’re faking social interactions.

Often, women seek a diagnosis because they can’t escape the feeling that something is fundamentally wrong. Society expects women to have strong intuitive social skills. Many autistic women talk of their belief that one day they would “mature” or simply “get it.” When they reach adulthood or midlife and that still hasn’t happened, they begin looking for another explanation.

Unfortunately, by that point, many women have become so adept at passing that mental health professionals refuse to believe they’re autistic. Some clinicians still hold damaging stereotypes of autism when it comes to women and adults in general. Women who suspect they may be autistic are told by professionals that they simply can’t be on the spectrum because they are too social, make eye contact, have a sense of humor, are married, have children or are empathetic and caring.

In listening to the stories of other women, I’ve heard two common narratives. The one that fits my diagnosis experience is the story told by women who sought out or happened upon a clinician experienced in diagnosing autism in girls and women. In my case, I went to a practice that saw a large number of adults and was fortunate to be seen by a doctor who was familiar with how Asperger’s Syndrome (AS) presents in women.

Jo, who was diagnosed with Asperger’s at 48, took a more direct approach:

“Through the fabulous internet I found a female medical doctor, who is also on the spectrum, and went directly to her for a professional diagnosis, avoiding the [New Zealand] public health system.”

If anything, Jo says, her doctor’s bias was positive because she had extensive experience working with autistic girls and women.

Of the nineteen women I talked to for this story, six described positive experiences with seeking a diagnosis and five of them have been professionally diagnosed. The remaining thirteen women spoke of a variety of barriers to diagnosis, including gender bias. Even Jo, who was happy with her diagnosis experience later in life, recalled that when she first raised the possibility that she might have Asperger’s with a college lecturer who specialized in AS research:

“I was told a flat ‘no’. I was also told people [on the spectrum] avoided eye contact, whereas I am one of the (inappropriate staring) watchers, so I thought I must be wrong.” 

Thirty-one years elapsed between Jo’s initial recognition of autistic traits in herself at 17 and her eventual diagnosis at 48.

Other women recounted similar stories. Lucy, who suspects she is on the spectrum, once raised the possibility with a psychologist, only to be told she was intentionally exhibiting autistic behaviors–that she was faking it. Discouraged and distrustful of doctors, she hasn’t sought a formal diagnosis.

Looking back, Nattily, who was diagnosed at 25, believes her autistic traits should have“sent up red flags” when she was 14. At the time, her psychiatrist diagnosed her with major depression, dismissing signs of autism as attention-seeking behavior.

The frequency with which professionals downplay or outright deny the possibility that female patients may be autistic is concerning. It suggests more than simply a case of missed diagnoses and raises the question of systemic bias against diagnosing autism in women and girls.

Why Diagnosis is Important 

Some people–including some misguided mental health professionals–suggest that diagnosing adults is pointless. If autism is incurable and you’ve survived decades without a diagnosis, what’s the point of labeling something that you’ve always had and can’t do anything about?

This attitude overlooks the importance of identity, as well as the more practical benefits that a correct diagnosis can bring. Personally, the most important outcome of being diagnosed AS was finally getting an answer to the lifelong question of “why am I different?” Autistic has become an important part of my identity, giving me a starting point for understanding the unique way I experience the world.

In more practical terms, a diagnosis can open the door to supports and accommodations at work or school. It can prevent us from pursuing courses of treatment for conditions that we may not have or create a foundation for therapy or coaching, using strategies that work for autistic adults.

The earlier a person receives an autism diagnosis, the sooner they can begin accurately assessing their needs and taking steps to reduce the challenges they face in daily life. This can be especially important during transition periods like adolescence, early adulthood, and menopause, when some autistic traits often become harder to manage.

With the network of autism screening and early intervention programs in the US today, it’s easy to assume that the next generation of girls will be accurately diagnosed in childhood, but that may not be the case. The average age of diagnosis for children today is 4.5-years-old. However, in response to my question about possible gender bias, Christa mentioned that her 10-year-old daughter wasn’t diagnosed until age 7, “because she didn’t have the typical boy symptoms.”

It’s certainly an improvement when late diagnosis refers to a seven-year-old rather than a forty-year-old, but clearly we still have a long way to go in recognizing autism in girls and women.

 

About the author, Cynthia Kim.

 

30 thoughts on “Hiding in Plain Sight: Diagnosis Barriers for Autistic Women and Girls”

  1. I was really moved by your article. It was as if, you where writing about my own life. My story has played out similarly to many of the women you interviewed. I just ask, where do we go from here? I have spent countless days and dollars searching for the answers and all my efforts availed me little in change.

  2. DOB 5 Nov 1955 I could not talk until i was 5 years old and when my parents enrolled me for kindergarten the school staff diagnosed me as retarded and wanted me to go to a state residential institution to be educated. My parents were both highly intelligent and I suspect that they both had Asperger’s and/or High Functioning Autism. But they had no idea how to help me to talk. It was proposed that I was not retarded but emotionally damaged , again that I was just lazy and had twinspeak with an older non twin sister and used her to communicate my needs. None of this was true. I just could not talk.

    A gifted young teacher asked for me to be tested non verbally and suggested I was gifted but Autistic . Of course in 1960 that was unheard of but she thought that too many atributes such as my ability to pull down a scrolling black screen over my consciousness to sit up while unaware were Autistic tendencies.

    I could not read until I was 9 years old. Neither could one of my daughters who is seeking her second university degree now. Another child, a boy was hyperlexic and taught himself to read any CVC word before he was 3. But he could not hear weight or take his first step until he was 23 months old. He has a formal diagnosis of Asperger Autism now. I remain uncertain about these conditions being synonymous . Perhaps HF Autism is co morbid with Asperger’s as Temple Grandin purports aligning HF Austism with “hypolexia” and Asperger Syndrome with Hyperlexia.

    Although I completed a dual degree at the University of MD in Primary and Special Education, I was not exposed to any idea termed Asperger’s Syndrome until the 1990s when my oldest son was formally diagnosed. When my youngest child was also confirmed to have High Functioning Autism then I was proffered the dagnosis by the pediatrician , myself.

    I was not given any support but was beaten and forced to stand in a trashbin because I could write the ABCs but could not say them aloud when ordered to do so at 7 years old.

    The Gender question is intriguing. I subscribe to the idea of underdiagnosis of females but also believe that HFA and AS occur less in females and that females are more resilient and capable of manifesting coping mechanisms especially mirroring social cues. Contrary to this is the puzzling idea suggested by Temple Grandin that Polymaths occur only in men even though genius is dual gendered . And she suspects as do I that Polymaths have comorbidity of Autism and Asperger’s syndrome.

    So there is much more to learn about Autism and brain scans and observations and early intervention give us that promise.

    Thank you for your article.

  3. This is an excellent article. I was diagnosed in my mid-30s. My initial experience in my quest for a diagnosis was with a psychologist who told me that since I wanted an diagnosis of Asperger Syndrome I should go to a psychologist who only had a bachelor’s degree and who had fewer scruples (almost verbatim). Instead I volunteered for an autism study at the University of Pittsburgh and was evaluated by a neuroscientist with a PhD who used the Autism Diagnostic Interview to diagnose me.

    1. Wendy, I live in Ontario and am looking for a similar way to gain a diagnosis for ASD outside my family doctor. How did you find out about this study?

  4. I was always ‘different.
    No matter how I tried to fit in, I failed.
    My children are SO like me.

    There are ALWAYS labels:
    I was obviously bright, but could not function well in school, so I was called ‘lazy’, ‘defiant’, ‘attention seeking’, ‘melodramatic’, ‘too sensitive’, ‘exaggerative’, a liar, ‘trouble-maker’; I could go on.
    I was tested for hearing problems multiple times in elementary school because I could not follow multi-step, verbal instructions; my hearing tested as acute. Why couldn’t I ‘hear’ the instructions?
    I was tested for reading comprehension in Grade 3/age 8. I was reading at a University level, but I was not put in a gifted programme because of my ‘uncooperative’ behaviours & poor grades.
    I made eye contact with ease, except when in trouble, but I also was chastised regularly for starting (atypical gaze). I was always trying 200% to ‘be appropriate’ all day, every day, and I was always accused of not trying at all.

    My children were born different. After years of searching for answers, and fighting a school system that was victimising my children, both were finally identified as Aspergian. My son was 1st, age 9, 2006. Then my daughter, age 8, 2008. Both have the same diagnosis, both present with very different traits. I knew that I had to be ASD also.

    I returned to post-secondary studies for the 6th time in 2013, age 40. I knew I needed help so as not to fail for the 6th time. I knew I needed assessment & diagnosis. The college helped me pay for assessment.
    The results:
    ~ Asperger Syndrome/ASD Level 1
    ~ Sensory Integration/Processing Dysfunction: Hypersensitive
    ~ Dyspraxia: Disability of Written Expression
    ~ Photographic Memory: Visual
    ~ Central Auditory Processing Dysfunction: ***4% of typical auditory processing***

    I *own* my dx. I love being an Aspie/Autie.
    I finally have answers.
    I finally understand.
    I finally have a label that fits!

    I graduated my college programme With HONOURS.

    My children are getting the supports they need to flourish.
    I have a great job that I LOVE, for the 1st time in my adulthood.

    I, and many in my extended family, participate regularly in genetic studies of Autism, and other studies & surveys because we don’t want any more ASD children, particularly girls, to go through life as I did, prior to dx.

  5. I am so glad i am not alone seing myself in my child. I am juststarting out at 38 years old trying to find out for sure. Are there any programs to help cover the cost of diagnosis for those on low imcome? I had to quit working to care for my son who is newly diagnosed and has multiple health issues as well.

  6. Thank you so much. I am 62 and figured mine out at 59 after being forever told I “wasn’t trying hard enough” including by the psychologist. The gift of being seen and accepted is so precious. I am so glad for the young girls today who can get that. Keep up the good work telling this story and getting it out there. When I was 7 and 9 years old other kids would ask me why i I did this or that and I would say ” I’m socially retarded. I just am!” I knew! Of course saying things like that was literally and figuratively beaten out of me. Now I.m old and some amount of eccentricity is accepted, but I still suffer with social failure day in and day out.

  7. “By the time we reached adulthood, we’d often mastered basic social skills, masking many of our autistic traits.”

    If only this were true. As girls and then women we are punished for not having “typical” skills that women are stereotyped to have naturally. It is isolating and being isolated from other people makes learning the basics difficult. Even impossible. Going from being a quirky child with a few friends to an awkward teen with fewer friends to a completely isolated adult I don’t understand how these skills can be “mastered”. Quite frankly, at this point, I’m not sure I care any more.

    It is bad enough to be invisible to the general population but to be actively seen as non-existent by other women with similar issues is really painful.

    1. I’ve had a very similar experience. I’ve always struggled intensely since childhood and been extremely unhappy, though everyone else acted and still acts like I shouldn’t be, even after being hospitalised for resulting depression and anxiety conditions, even after developing panic disorder and agoraphobia due to unrecognised autism (most people who develop that mental health problem have been attacked) and yet still no one really cottoned on that I was really suffering. I’ve been housebound for year and have not been able to live my life at all. It was only recently that I had several people suggest to me online that I am almost definitely on the autism spectrum. And now I’m desperately needing to get tested, but struggling with that as well.

  8. @Invisible Always says, you are taking the comment the wrong way. Masking autistic traits is not having “typical skills”. It’s usually mimicking others to a basic level that you can get by, or remaining on the periphery being as quiet as possible and just answering when people speak to you, or cognitively recalling in your head rules you are meant to follow…and struggling along with it as best you can. It does not mean you are socially adept or able to convince everyone you are neurotypical. Even if you can do that, it’s impossible to sustain. When people are around you a little more they will start to see differences. This is masking.

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  10. I am more than 100% sure that I have asperger syndrome but my diagnosis came back negative. At first I was really shocked and when I asked how they came to that conclusion they told me that I have more than 1 friend and I try to maintain eye-contact through-out a conversation, therefor there is no way that I could even be on the spectrum.
    At the age of 17 I was appalled. Of course I know basic social interactions! My entire life people have been telling me what to do and how to act.
    In conclusion I’m really happy to find out that there are psychologists out there who specialize in the autism spectrum for woman, maybe now I can finally get the diagnosis that my schools have thought would fit me since the age of 6.

    1. Nanette, do get another assessment and make sure it is by someone who is very knowledgeable about females with autism. The same happened to me with the NHS but I was subsequently diagnosed privately (and it has been verified by brain scans and genetic and medical evidence so the NHS are crap!). Same story with my eldest child. CAMHS had no expertise with high-functioning children nor females and tried to make out she had an artificially high score due to OCD so she was diagnosed via a second opinion (also NHS). The only one of us that was diagnosed straightforwardly was my younger daughter and she has a more male (obvious) presentation in several ways, so it is definitely down to ignorance of female presentation when diagnosticians miss the diagnosis in females.

  11. I like to say I pass really well until I don’t. The instinctual masking and “chameleon” behaviors I’ve picked up over the years make me “normal” for maybe ten minutes, so I limit my interactions with people I don’t know well so that the mask doesn’t break down once I have to start improvising my answers. My best friend in the world, one of the very few I actually have, is on the spectrum as well, so our idiosyncrasies and autistic behaviors don’t bother each other as much. We’re both perfectly happy to have parallel conversations and jump in to address something the other says that relates to our own thoughts. I’ve heard it’s normal for Aspergirls to get along better with other people on the spectrum, because being ourselves is much easier when we don’t have to pretend to be “normal”.

    I’m 35 and only recently realized I had Aspergers. I wish someone had noticed sooner.

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  13. Ever since I started meeting women with various diagnoses on the spectrum, I’ve been convinced that this is one of those things, like heart attacks, where medical professionals diagnose based on the typical presentation in men, Surprise, they miss the women. In the case of a heart attack, their mistake is flagged up on the autopsy table, and yet persists. I’m not surprised that in autism, where passing is possible for a few minutes, there’s no push to reconsider the ‘typical’ symptoms.

    I know a lot of women have said they memorised rules based on what teachers/parents/someone in authority told them was ‘proper’ behaviour. Do those rules get the reinforcement for boys that girls have? I can’t help but wonder, if boys on the spectrum were policed and forced to learn the social rules the way that girls on the spectrum are, would they display the same ‘atypical’ ability to mask?

    I’m not saying that would be a good thing, by the way. But I bet there are people who would think it was a solution. No more making the neurotypical uncomfortable.

    [Disclosure, although a couple of people with diagnoses have said I have aspie traits, I have no diagnosis and I’m not seeking one]

  14. My daughter was diagnosed at the age of 16 years as a result of a private assessment having been misdiagnosed when she was.
    11 years old

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  17. bob loblaws law blog

    I appreciated this article a lot. I’m in the beginning, here, taking a bunch of self tests and am consistently within a few points of females with ASD. I end up atypical every time. For someone who spent her life trying to blend (Oh yeah, you *blend*) I don’t know how to feel. I cried when the first test (RAADS-R) showed I was more than double the threshold for ASD. Half relief, half grief.

    I’m just so tired of all the energy it takes to maintain fake interest, fake empathy, and overall effort of being a mother, wife, and female.

    Instead, I have a life where I have to spend all my energy on other people. I am literally in the exact wrong life for who I am. I feel burned out. (♪♫ Cause we are living in an ESFP world, and I am an INTJ girl…♬)

    I constantly have to make myself smaller, more palatable, translate my thoughts, actions, and plans so I can get along with others. I hide, I play strategy games to calm down, I whisper to myself in French, get alone whenever I can to read Harry Potter and historical biographies. Anything to escape. I thought my oddities were because of intellectualism and self esteem issues stemming from childhood but learning about female autism has been a bit of a revelation.

    I hope to find a local psychologist who can work with me to determine if there is a name for my agita, ASD or not. I really don’t care about the label, but I would like to find “my people” and learn coping strategies. That’s what I do best…learn and apply rules…whether I am an adult child of a narcissist or autie or whatever. There’s nothing that can be done about it except establish an identity (FINALLY) for myself and have permission to relax. And hopefully save my daughter. I have a 4 year old who is starting to exhibit similar behavior and I catch myself teaching her ‘how to fit in.’ I want her to have a less traumatic life.

    1. @bob loblaws law blog Girl, you made me laugh and cry, so…thank you for sharing! (Looove the name, btw) Wow, did your words resonate deeply with me, and your story sound all too familiar…

      My son was recently diagnosed with ASD at age 19, but I suspected something was “different” about him from the time he was 2. The pediatrician at the time said that he was fine since he made eye contact, was affectionate and could talk…sound familiar? I’ve had to push to finally get someone to take the time to believe me about him. His father outright refused to believe that his son could have Aspergers, even going so far as to say that “That’s not a recognized condition anymore” because the DSM classifications had been changed to wrap Asperger’s into the autism spectrum.

      As I started reading articles and books to learn how to help my son, I realize that my oldest son probably has ASD, as well. Then it began to dawn on me that these articles were talking about me, too. And both of my sons have different biological fathers, so who might be the link…? I haven’t shared my suspicion with many people, but my mother definitely thinks I have Asperger’s. To quote her, “If this is true about you, it just explains so much.”

      I have yet to make it through a single article about women on the spectrum (this one included) without crying. Every single time… What grief and relief to know that who I AM is not flawed, weak, faulty, difficult, damaged, defensive, rigid or wrong. I was born with neurological condition. I was born this way. I was born this way…..wow.

      I’ve spent 48 years fighting against my nature – adapting, bending, conforming, STRUGGLING to fit in. I’ve managed to not only mask, but also become more comfortable with social interactions that I wasn’t capable of, wasn’t even aware of years ago. But…it takes constant vigilance, and because I’m a busy mom who juggles so much, my attention sometimes breaks, and I make a social mistake. Then I go back over the mistake, break it down, analyze it, then rebuild the scenario in my head so that I hopefully won’t make the same mistake again. It’s utterly exhausting.

      Does anyone have a recommendation for a practitioner who specializes in women on the spectrum? I will travel outside of my home state of Texas, if necessary, to find the right organization/practice/study for a formal diagnosis.

      Thank you ALL for sharing your stories!

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