How self-diagnosis is helping autistic women make sense of their worlds

I’ve always felt a little like I’ve been watching society from behind a glass wall.

No matter how much I tried to interact with my peers, something invisible was in the way.

Four years into my university studies I hadn't made or maintained a single meaningful friendship. I saw my highschool friends thriving socially and I felt defeated. So in my early twenties I decided to pursue an official autism diagnosis. 

I arrived at the psychologist’s office nervous, but hopeful. Diagnosis or not, I would finally get the answers I had been seeking my entire life. 

But during the appointment, the doctor told me I “cared” too much about what other people thought of me to be autistic. He said my studies and achievements made me too successful; I had too many friends to possibly be autistic, he told me. He then asked about my two ‘officially diagnosed’ autistic brothers. “Your brothers don’t have friends, do they?” Yes folks, that is a direct quote. “Uh yeah, they do,” I replied, dumbfounded.

If this was the question line from a supposed medical professional, there was no way I could believe a diagnosis - or lack thereof - from someone who clearly knew nothing about the different presentations of autism.

Around the time of this appointment, I was also managing my chronic illness and chronic fatigue so I didn't have the energy to push back. Despite this non-diagnosis, I continue to relate to the neurodivergent community in a way I haven’t experienced anywhere else. With diagnoses often being delayed or difficult to access, it’s not surprising that there is an increase of self-diagnosis among women and gender diverse people in the autistic and neurodiversity community.

Jess, aged 26, is a PhD student based in Tāmaki Makaurau. She identifies as autistic, noting that she first started piecing together her identity as autistic in her early 20’s. After seeing content on social media joking about “autism things”, she found herself relating to a lot of oddly specific things. 

“Obviously not everyone who relates to something has that thing, but I kept noticing that I seem to have a huge amount of overlapping experiences with this group of people. So that… started the little ball rolling”. Jess’ siblings also went through the diagnosis process for their neurodivergence, and Jess found herself reflecting on their overlapping experiences. She also gained insights from her autistic friends, relating to their stories. 

Stacey, a mother based in Tāmaki Makaurau, always knew she was “different”. She only started thinking about why, however, when her child was diagnosed with autism. The more she learned about autism and ADHD, the more connections she made to her own experiences. 

“You start to pick up on things and realise… Maybe I've got something like that.” When she then started learning more about how autism presents uniquely in females, she thought “that explains basically everything in my life,” she says.

The barriers

While their stories and experiences are unique, both Jess and Stacey encountered multiple barriers when considering seeking an official diagnosis. 

Jess, who is chronically ill, is comfortable with her self-diagnosed status. While she has gone through cycles of wanting to pursue diagnosis due to the stigma associated with self-diagnosis, she feels like her life is already medicalised enough without adding another diagnostic process into the mix.

She did speak to her GP about seeking a diagnosis, but a conversation was as far as it went. Jess was given a list of specialists to choose from, but she felt like she didn’t really get a choice. She didn’t know these specialists and which ones would be understanding - or invalidating - of her experiences. “Who knows, I might have pursued it, I could have chosen someone and they might have been amazing. But yeah, it's just kind of scary.” Jess had heard stories of specialists being dismissive towards people seeking an autism diagnosis, and she worried that the same could happen to her.

Stacey is a busy mother who works full time; seeking an autism diagnosis for herself is far down her priority list. She also has a trepidation that’s common among neurotypical people seeking a diagnosis: “That's the fear, to be told that ‘no, you're not autistic’ because of how you're outwardly presenting, when you know in your mind there's all this stuff going on.”

A helping hand from community

While Jess does not have an official diagnosis, her friends from within the autistic community gave her confidence with her identity as neurodivergent. “They were like, ‘Oh, yeah. 100% of course you are, I honestly thought you were already diagnosed’.”

Stacey found the neurodiverse community to be accepting of her diagnosis. “A lot of people are self-diagnosed anyhow, because it really is hard to get a diagnosis in New Zealand.” When hearing about a support group for autistic women from someone in the autism sector, Stacey was told she was welcome despite her lack of official diagnosis, and her identity was affirmed. 

Allowing ourselves grace

When asked whether self-diagnosis had changed the way she faces daily challenges, Jess says her self-diagnosis has led to her accessing life-hacks - such as using noise cancelling earphones for sensory overwhelm and fidget object recommendations - and other helpful resources that are freely available online. As a result, she finds herself “understanding what is happening for me and sort of having compassion for myself”.

Since accepting her self-diagnosis, Stacey feels less pressure to conform to societal norms. 

“I allow myself a little more grace not to be like everybody else, not to expect myself to do my work in the same way that somebody else would… I'm just slowly allowing myself to be a little bit more different.” Stacey has started experimenting with different hair styles and colour as a form of self-expression to show her true self in a way she might not have before identifying as autistic. “I always felt like I've been put in this box of ‘this is who we think you are’, and that's based on my mask, not me.”

‘Self-diagnosis is valid’ 

When asked if she had any advice for people on a similar journey who may be considering self-diagnosis, Jess responded: “I want to reinforce that self-diagnosis is valid, especially where it comes from an inability to access an official diagnosis.” She recommends cultivating a safe space and surrounding yourself with supportive people wherever on the journey you may be on. “I feel that community is the biggest tool for me. Just having people to relate to and talk to about things, who get the experience is so nice.”

Stacey says while we shouldn’t require a formal diagnosis to access the support we need, if you feel like it would have a positive impact on you, then seeking an official diagnosis may be worth it. 

Hearing Jess and Stacey speak about their experiences that were both similar to and unique from mine made me feel… connected. Validated. Interacting with this community has finally helped me feel a sense of belonging. 

Self-diagnosis, though it arises out of necessity, has become an empowering tool of self-discovery. Self-diagnosis can open doors to support networks, even in the absence of official diagnoses.

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