Lilydale Youth Hub

Being a girl made it harder to get my Autism diagnosed

Do girls experience an unfair barrier to getting the diagnosis and help they need for Autism because of gender biases in the medical community?

This article in three points

  • Sarah grew up in the Yarra Ranges and always felt that she was a little different to her classmates. After seeing some Autism info online, she identified with some of the things being discussed, which made her question if she herself had Autism.
  • She gives us a personal insight into the journey she took to get diagnosed with Autism, and finds that because our understanding of Autism is based on young boys, it can be hard for a young woman to get taken seriously when seeking answers.
  • To improve the situation, society needs to further understand that Autism is a spectrum and not all Autism looks like the stereotypical images that we have of it.

 

First a quick history lesson:

The modern understanding of Autism was first developed over 100 years ago. In the 1940’s, two different child psychologists studied children who had developmental and communication issues.

Autism continued to be studied in young children for the next few decades based on this initial work, but sometimes the researchers were way off, such as one Austrian psychologist who thought that Autism was caused by mother’s who were neglectful or emotionally cold towards their children.

The studies done in the 1940s set the foundation for how we understand Autism today, except the problem is that the studies were mostly done on young boys.

It is only more recently that people are becoming aware that Autism looks different in boys and girls, but because the medical community uses decades of studies done on boys to form their understanding of what Autism looks like, a big change needs to happen to stop young women going undiagnosed.


Sarah’s journey to getting a diagnosis

Sarah is a young Yarra Ranges woman who says she has always been a little quirky.

“I was always a little strange and felt I didn’t fit in. I was socially a late bloomer and didn’t have a strong need to fit in, so just went on being my weird self.”

“People would notice my little quirks before I did. I would repeat words or phrases without realising I was doing it (it’s called Palilalia) or walk on my tip toes. A friend would notice me doing these things and point them out. It was only then I realised I was doing it, like my brain was doing these things on its own”.

Later in high school, Sarah was becoming aware that she was different to others in her year level. She found being in school and not knowing why she felt different to everyone else to be very tough, adding internal challenges to the everyday challenges of growing up as a teenager.

“It’s a challenging enough time on its own,” she says. “Let alone having a brain that processes the world differently to other people. It’s that much harder to focus and take in information.”

Tik Tok raised some questions

Things started to change a few years after Sarah finished high school when she saw some Tik Tok posts from young women about their Autistic traits.

“I thought ‘oh, I do some of that stuff’ but ultimately didn’t think too much about it. Then I saw another post, and another, and started to think ‘oh my gosh this sounds really familiar’.”

“Then I started doing more research online and listed out all of the symptoms of Autism that I related to. I ended up with a three page document by the end of it, which gave me the feeling that I probably needed to raise this with someone and get some answers.”

Sarah booked in an appointment with her GP, but when she raised it with him, he dismissed it, not believing that Sarah could be Autistic.

“My doctor is really good, friendly and helpful, but he didn’t want to look into it despite all of the symptoms I identified with because I looked normal and could come across as normal in certain situations.”

“That’s what you get judged on initially, so if you don’t fit your doctor’s idea of what Autism looks like then it can be hard to progress.”

Sarah was very clear and firm with her GP that she wanted to get an assessment.

“I said if I don’t get an assessment and find out then it’s going to weigh on me and bug me not knowing. I needed some kind of answer.”

Acknowledging that not knowing was causing Sarah distress, her GP eventually gave her a referral to be assessed. It still took some time getting to the answer though.

“It took months to get the diagnosis, which is a long time to be in limbo not knowing if I was or wasn’t autistic. I wasn’t worried or scared about being Autistic, but I was struggling with not knowing and really needed some kind of conclusion to it.”

“By this point I’d already had a number of anxiety attacks just from existing in the state of trying to make myself fit in. You feel like you are being inconvenient to people around you, so you feel guilty and ashamed.

After months of pushing her GP and then the assessment period, Sarah’s results finally came back.

“I was so happy and to have an answer. I was no longer a freak or weird, I was just a different kind of normal. I was immediately relieved to know why I am the way I am.”

For more, check out this video from Autism Awareness Australia: Gender differences in autism

What change needs to happen?

By far the biggest problem is that everyone has a stereotypical idea of what Autism looks like. Changing this isn’t easy. Firstly, we need to see more studies and medical knowledge focused on Autistic girls and women. At the same time, we need to improve public awareness and understanding of what Autism is.

Until we change the stereotypes around Autism, experiences like Sarah will continue to be common for young women. In Sarah’s case, it was only because she pushed her GP to help her get the assessment. There may be many others who don’t get that and fall through the gaps.

Rua M. Williams, a non-binary autistic blogger and researcher in America has stated: “Until we attend to the full diversity of Autistic traits in confluence with gender, sexuality, culture, ethnicity, race, class, we will continue to miss people, and they will continue to feel lost.”

Sarah’s advice for young women who aren’t sure if they have Autism

Sarah urges that if you find information online that you identify with, you should look into it. In her experience, getting the diagnosis is better than existing in limbo not knowing.

“Just cause you don’t want to hear something doesn’t mean you shouldn’t listen,” she says.

“For me, autism isn’t a disability, it’s just another way of being. If you feel like you might be Autistic, but aren’t being taken seriously because you are a woman, or a girl, push your doctor to help you get an answer, especially if it is causing you stress by not knowing if you have something or not.”

Useful links and info

There are some good support groups out there that you can connect with in helpful ways, such as the Yellow Lady Bugs Facebook page
Different Journeys – Autism support and events in the Yarra Ranges
Article – Righting the gender imbalance in autism studies

Article – Maya’s story

Autism Awareness Australia – Autism What Next?

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