Why Diagnostic Processes Need to be Better

Image created on Canva by Madeline Summers 2023

During school, I didn’t have many friends. I have one incredibly vivid memory of an activity our Year 6 teacher had us do – she made us fill out a profile to be displayed in the classroom, which included a list of our best friends. My profile had a substantial list, but when I checked other’s profiles, my name didn’t come up. Not once. It was shattering, my 12-year-old heart was confused. I sat with my friends daily, we chatted, we played; so why was I in no one’s best friend list?

Of course, I never asked the question to my classmates. But I can imagine my social ineptitude meant I had no idea that my interpretation of friendship wasn’t ‘normal’. Maybe knowing I had ASD and ADHD might’ve helped me – I’ll never know now. But it definitely would have saved me from years of confusion about why I never seemed to garner meaningful relationships in my youth. Why I never had proper close friends.

Unfortunately, I’m one of many women who spent their formative years like this. Late diagnoses are happening all the time, and social media has spread its awareness like wildfire. This is a direct reflection of the male-skewed diagnostic tools that favour the symptoms that often present in males with ASD and ADHD. An article by ABC discusses these issues, arguing that women and girls are harder to diagnose, and because of this people like me aren’t able to access the help they need. I can only speak for myself; however I can truly attest that my own quality of life, mental wellbeing and relationships have become exponentially better since understanding my neurodivergent brain. I can only imagine the positive ramifications that would occur if diagnosis was easier, and women and girls could be formally diagnosed more often.

ABC interviewed a woman named Heather Cox – a woman who received a late diagnosis at 38, and who has two children with autism, a boy and a girl who displayed different symptoms. Unsurprisingly, her son had the more ‘obvious’ signs. The reason why diagnostic tools need to accommodate traits specific to all genders is because, typically, boys will externalise their symptoms, whereas girls are more likely to internalise them and try to camouflage themselves in the social norms in which they exist. This so profoundly resonates with me because I distinctly remember paying attention to people around me, and I tried my very best to copy their mannerisms, style and social interactions.

While self-diagnosis is valid in Autistic communities – and self-validation and acceptance is an incredibly powerful step for neurodivergent folk – actual medical diagnosis opens doors that many girls and women need. In the article by ABC, it’s stated: ‘Diagnostic disparities are reflected in the number of autistic women and girls on the National Disability Insurance Scheme (NDIS). Of the 35 per cent of current NDIS participants who are autistic, 70 per cent are male, according to the most recent quarterly report’. These figures absolutely do not accurately represent the actual ratio of Autistic boys and girls and shows that girls and women are simply underdiagnosed. There’s so much that can be done to get that percentage closer to 50/50. It should start with better diagnostic tools and processes, as well as a better understanding of how neurodivergent young girls and women present their symptoms.

There’s a long way to go, that’s for sure. But to save our young girls from a youth, early adulthood or even middle or old age lived in confusion about their life’s puzzle, we need better understanding from society – and especially diagnosing clinicians – and a more accessible and accurate diagnostic process.

References

Long, C. (2023). Autistic women and girls missing out on support due to male-skewed diagnostic tools, research finds. ABC. https://www.abc.net.au/news/2023-05-29/autistic-women-girls-delayed-diagnosis-support/102386916

NDIS. (2018). Quarterly Reports | NDIS. Ndis.gov.au. https://www.ndis.gov.au/about-us/publications/quarterly-reports