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Why Autistic Women Are Misdiagnosed And How I Learned To Embrace My Condition

Why Autistic Women Are Misdiagnosed And How I Learned To Embrace My Condition

why autistic women are misdiagnosed

I remember it all too well, the day I received my diagnosis. After multiple meetings with a psychiatrist following my constant self-harming and suicidal thoughts, I would finally hear what was wrong with me. I was 15 at the time and lived in Sweden. And the verdict was: major depression, anxiety disorder, PTSD (a story for another time)… and autism.

I was furious. I shouted at my psychiatrist and said that was impossible, and then stormed out of the room. I had already decided that I must have Borderline Personality Disorder (BPD) due to my self-harm behavior, fear of abandonment, and intense mood swings. Autism seemed like a ridiculous conclusion. The irony.

In hindsight, it was extremely autistic of me to freak out and reject a diagnosis because it didn’t fit with my belief system. But there’s another reason why this whole scenario was nothing but ironic.

Women don’t tend to get diagnosed with autism; more than four boys are diagnosed for every girl.

Most autism research focuses on the study of symptoms in autistic men. As a result, autistic women tend to be overlooked and misdiagnosed, often with ADHD and, you guessed it, BPD.

So why do women get misdiagnosed? A lot of it has to do with autistic women struggling with depression, anxiety, eating disorders, and self-harming. I had all of those things.

Women might seek out professional help due to these issues and often get a BPD diagnosis because of the overlap of symptoms: emotional reactivity, relationship issues, problems forming a stable sense of self, and self-harming.

Women are also better at masking (pretending to be “normal”) and often don’t fit the stereotypes of autism.

For instance, while autistic men might have special interests that focus on objects (like rocks or spaceships), the special interests of autistic women and repetitive behaviors might be more subtle. Women’s special interests might also include a fixation on people, which is another reason why I thought I had BPD at first.

Looking back, there were so many autistic traits throughout my childhood that I simply never paid attention to. It never occurred to me that I was THAT odd. I knew I was different but was I really different enough to have a label forced upon my identity?

When I was younger, I hated taking showers, brushing my hair, and wearing socks, because I didn’t like how these things felt. Actually, that’s putting it mildly; they put my whole body into a hyperdrive where I would feel suffocated, smothered, and trapped all at once. But obviously, I was forced to learn to get used to most of these things.

I was also very adamant about routines and which days certain foods should be eaten. I preferred eating the same breakfast every day (still do). If anyone messed with my routines, I would end up lying on the floor and shouting until it went back to normal.

I also refused to drink the milk in Sweden when I moved there from Norway because it tasted different, and my body reacted strongly to change. Like, it just wasn’t milk, so how could I trust it?

School was challenging too. Everyone around me could sense that I didn’t fit in, so I was an easy target for bullying. Most days, kids would chase me after school and spit on me. Disgusting. And too often, teachers had to explain that kids were laughing at me and not with me. It had never occurred to me that people could laugh AT you. Wasn’t laughter meant to be positive?

It was no surprise that my only friends were adults. When I wasn’t hiding in a corner reading Science Illustrated, I would enjoy making up my own theories about black holes and the universe and then ask my physics teacher about my hypothesis. Sadly, she could never answer my questions.

I loved spending time alone reading books, learning languages, drawing, writing, and sometimes pretending I was in a different universe. Was that a crime?

I ignored my diagnosis. In high school, I finally found a couple of friends who were as quirky as me, and many of my peers seemed to accept me there. They occasionally laughed at me when I started adding hand gestures in my conversations (pretending to act normal) and kept asking me what those weird gestures were. I had no clue—I was merely copying what I observed.

But things took a drastic turn when I started my first job in London as a waitress at 18. There it became evident that I had no concept of:

  • How to engage in small talk
  • How close to stand to someone when talking to them
  • At what volume one should talk
  • Whether or not it was safe to eat random food in the canteen

I was also once told off for engaging in deep, meaningful conversation with a customer. Apparently, that was rude because they were on a date. But I was still in denial about my autism diagnosis.

Once I started university, it became more clear how weird I was. There were so many people, and I had no idea how to form meaningful friendships. While I talked to people, they all seemed to use one consistent word to describe me: quirky. Or they would say I was “too much.”

I had no idea what to do with that information. Most people seemed to think I was funny, so I just went with it. But it hurt that people would call me “too much” when I didn’t even understand what I did wrong. I just wanted to make friends, just like everyone else.

A couple of people managed to point out how “Aspie” I am. However, I still didn’t feel comfortable openly putting a label on myself. Especially a label that would define my whole personality.

While at university, I also started dating and was in a long-term relationship. As with most relationships, it ended. Circling back to routines, a major routine suddenly changed. A person that was very close to me suddenly vanished from my life. I acted out.

There was a time when I suddenly became extremely impulsive until I found a new “special interest,” a new person. But that person didn’t want a relationship with me and had told me that they had hinted at it multiple times. What were the hints? I felt confused.

Every person around me was speaking a language I couldn’t understand. And I kept trying to speak that language but was never successful.

The realization of this put me back into a spiral of trying to be perfect, trying to fit in, trying to be loved. I starved myself, made myself vomit, self-harmed, and wanted to end my life.

Another psychiatrist diagnosed me and gave me the label I had given myself previously: traits of BPD. I accepted it because I wanted a condition that could be fixed. I wanted to be fixed. Obviously, BPD is a complex condition and not easy to “cure” either. Still, I really hoped I could be saved if I started therapy.

I’m still not sure how to balance all my different diagnoses. BPD makes sense when I’m at my worst, but I’m not in that state very often—only when my life is disrupted in some way. I also know many people who have BPD, and they struggle a lot. All the time. More than likely, I received a misdiagnosis that many autistics receive when their symptoms are at their worst.

Having spoken to many autistics in the UK, it seems that women struggle to get an autism diagnosis in this country. One psychologist I talked to flat out said it was unlikely I was autistic because I managed to force myself to make eye contact. Yes, but I learned to force myself. I still avoid eye contact whenever possible *eye-rolls*. And there is a lot more to autism than just the eye contact issue.

After university, it was time to find a full-time job. I found mine in a betting shop. Customers often pointed out how quiet I was, but I learned to copy all my colleagues after a while. I quietly observed them for a couple of months, then felt comfortable replicating their humor, vocabulary, and loud ways of talking. Even their inappropriate jokes. I finally fit in, even though it meant I had to put on a mask every time I went to work. Around that time, I slowly started to accept that I was autistic.

A year later, I interviewed for a promotion to join the head office. I was asked what my greatest weakness was, and I said autism. Back then, it was nothing but a weakness, and that’s how I saw it.

My new managers all knew I was autistic, and I was pulled in for a chat frequently whenever I was “too autistic.” I had the same struggles as I had at my waitressing job, was pulled for them, but also whenever I:

  • Played with my hair (my form of stimming, since it’s more subtle than clapping or stomping).
  • Interrupted other people (I genuinely don’t understand when it’s my turn to speak).
  • Corrected my manager when I saw an error in his reports. (He tried telling me off for something when his reports were incorrect).
  • Quietly did my job, failing to check if my colleagues needed help. (When in reality, I thought it would be more efficient if they just told me if they needed help, rather than have me interrupt them).

Sometimes, I would get overwhelmed with the noise and the work that I would snap “not now” to a colleague without realizing I snapped. In those moments, it helped being told what I had done so I could apologize. I hate the thought of hurting other people. But even if it sometimes helped being told, it was disheartening knowing that I would constantly fail no matter how hard I tried to act “normal.”

After realizing that my job just wasn’t working for me, I applied for new ones and received a few offers. I decided on a job I would be passionate about, which would also have better routines: a stable 9-5.30 working pattern. It did wonders.

Not only was the job better, but my colleagues were supportive and kind. I felt comfortable discussing my autism without being judged for it. We could even joke about our different communication methods.

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For instance, they would always start with small talk before saying what they wanted.

Them: Hi, how are you doing?

Me: Good, thanks, how are you?

Them: Good too, thanks. I just wanted to check if you heard from person X yet regarding project Y?

On the other hand, I tend to jump straight to the point. But I’ve learned to make jokes about it at team-socials, then explain why that is. This, in turn, helped colleagues reach out to me when they struggled with their mental health. And I’ve been able to offer support.

While autism has been quite a challenge to live with, I’m slowly coming to terms with it and accepting myself for the way I am. The diagnosis helps me understand myself and also helps me ask for support.

When discussing my concerns regarding wanting to become a manager but fearing autism would get in the way, a career coach advised me to think about all the positives I’ve gained through my condition. And there are a few:

  • High intelligence
  • Extreme attention to detail
  • Able to see things from a different angle
  • Problem-solving
  • Honesty, never bullshit
  • Caring about other people very deeply (but not always knowing how to express it)
  • Not scared of proposing bold and novel solutions

Yes, the negatives are many. But it’s easy to depress oneself when only focusing on flaws. There are many, many things I would change about myself. However, I’m sure that’s how many people feel about themselves.

I’ve learned that not every person needs to like me and that I don’t need a million friends to be happy. The friends I have made accept me the way I am, and that’s all that matters.

If an employer or partner doesn’t value you, it’s ok to look elsewhere and find a place where you are valued. That place exists.

Naturally, I still find myself asking why I hid my disability that long. I think it’s probably because of stigma—not wanting people to form opinions of me based on my condition.

It’s important to look past all the negatives, and realize that autistics deserve to be loved, accepted, and respected just like everyone else. And that many can be exceptional employees and friends under the right guidance and with the right support (like open communication that doesn’t come from a place of “telling off”).

Of course, I am privileged that I managed to go to university and have a full-time job—many autistics struggle with that. But no one should ever feel ashamed or be discriminated against because of their condition.

As for women, I really hope that more psychiatrists will help women get diagnosed. Autism has helped me understand the root cause of my eating disorders, depression, anxiety, and suicidal thoughts. Learning to accept my autism and quirkiness has helped me heal from my trauma.

So it’s time to embrace one’s conditions, ask for help, and see past all the stereotypes.

View Comments (2)
  • I’m a 27 y.o. female who just received a similar shocking statement from a doctor following an assessment for ADHD: autism, not ADHD.

    I decided I had BPD when I was going through adolescence and also got assessed. The psychologist back then said I had “traits of BPD” but that it didn’t quite fit.

    Every word of this article resonates with me—including the self-harm, ideations, and eating disorders—I’m so happy you wrote it. Thank you.

    • Hi Kay!

      So happy you found your way to this powerful piece of writing by Jorun and that it resonates with you.

      I would always encourage you to follow your intuition and get the opinions of multiple doctors, health care professionals and wellness practitioners when it comes to anything.

      Love,
      Shani

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