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

I have encountered many of the below barriers or have communicated with women who have. I can take no credit for the following information but it was too good not to share.

Written by Cynthia Kim (Musings of an Asipe), AWN Contributing Writer please check out the full article here on the Autism Women’s Network.

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.

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.

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.

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.

Written by Cynthia Kim (Musings of an Asipe), AWN Contributing Writer please check out the full article here on the Autism Women’s Network.

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

  1. I hear the part about masking. I didn’t struggle with this, because my ears and odd gait gave me away. My hands were frequently over my ears and I was told I walked like a duck. I couldn’t mask the anxiety and dread I felt toward other kids due to their noise and bullying. Teen years brought out aggression in my meltdowns. I developed PMDD when I was in my late teens. I had a few superficial friends for 5 years, but they were long gone by the time I was 16. I was always alone in school as they were a year younger or put in a different class schedule. I also cried the first week of school from kindergarten thru 10th grade. I cried out of fear and change, from being away from love and safety. I couldn’t mask all these symptoms if I tried. I feel very isolated from non-autistic and autistic, girls and boys. My model is painfully unique. Dogs, kids and fireworks severely limit my life.

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  2. Never gonna get it. It’s like getting beat up every day….through out life the biggest ‘train-wreck’ events, horrifying social gaffs with people so angry with you and you never knowing why…it’s easier to stay home. Women are just supposed to ‘know’. It’s supposed to be intuitive. All guys have to do to pass is feign interest in a sport. The world of girls and women is a social minefield of subtle signs never taught and not understood. After several excoriating life events you figure out how to pass, like that woman in the old horror flick, The Body Snatchers. To survive she learns to behave as the aliens. It is exhausting and harrowing.

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    1. I feel that it is not really your fault that they were strongly offended, I think if they get angry during a social interaction simply because you have not responded to some unspoken cue, then they have displayed poor decorum in my mind. I find that the worst faux pas an autistic person usually says is merely something blunt, which is not something that should provoke visible anger. I feel the most worrying thing today is that hair trigger tempers are becoming more and more common.

      Lastly, Anna, thank you for maintaining this blog, you are doing a great public service in providing this informative forum for those who have few outlets to discuss their concerns. You are like the person who delivers a supply of coal in the dead of winter.

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      1. I agree we are not responsible for how others respond to us, only how we respond to others. Someone acting this way has problems they need to confront – anger, intolerance. These should not be a reflection of you. . . Also – Thank you so much for your kind words! I truly hope that this blog helps people. It is still hard to believe the following that has grown around it. I am humbled every day.

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  3. Hi Anna, I really like your blog and relate to everything I read! I am currently waiting on being evaluated for HFA some time this winter or early spring, after years of frustration and not knowing what was “wrong” with me (I am 23). In the last few years I have been very stressed and so have met various therapists. The latest one happened to be an expert in ASD in young women and she soon shared with me her suspicions that I have HFA. While it came as a shock since I hadn’t considered it before, it also felt completely right and like everything in my life fell into place.

    This post in particular is really striking to me, since one hurdle I had to get over in order to be placed on the waiting list for an evaluation was the comment, “since you have already learned to fit in so well you might not be eligible for a diagnosis”. It felt really unfair that just because I have struggled to cope with my problems and finally found a way to go about it, I might not even get any help. Luckily, I convinced them otherwise, but it’s still quite sad to think about.

    Anyway, I’ve followed your blog and look forward to reading more of your posts!

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    1. Thank you SO much for sharing your own story. It is so important that we speak up and tell the world the truth about our struggles. We have let them speak for us and make assumptions about what goes on inside of our minds for too long. Aspie women tend to be as deep as the ocean, but sometimes I look like a complete twit in social situations (when I fail to hide my general confusion). NT people have a hard time believing that there is more than meets the eye. Good luck on your diagnosis. More about diagnosis below. Please feel free to shoot me an email if you have any questions. 🙂 https://anonymouslyautistic.net/category/diagnosis/

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