Why Females And AFAB people on the spectrum are being diagnosed so late
Did you know boys are four times more likely to be diagnosed with autism than girls?
That’s largely because the testing criteria for autism is centred around the male or AMAB experience and the fact that males, tend to but not always, present their autism more visibly.
This means a lot of autistic females or AFAB people are being diagnosed extremely late, misdiagnosed, or undiagnosed altogether.
Alice Glascott was diagnosed as a person on the autism spectrum disorder when they were 14 years old, which they added is actually quite early for a woman or AFAB person. Compare that to when most males or AMAB are diagnosed, which is around one to five years old.
“My diagnosis definitely came as a shock to me and it was something that I suppressed throughout my adolescence out of fear of being bullied and not believed. I didn’t fully accept my diagnosis until I was like 20 years old,” Alice said.
As a child, Rachel Worsley was non-verbal, meaning she didn’t talk at all. She had very slow development of speech and just general interaction, and displayed a lot of the symptoms of autism. But doctors were still reluctant to label her, she told Junkee.
Because there’s nothing like a blood test to detect autism, experts rely on screening tools designed to diagnose people with ASD or Autism Spectrum Disorder.
The testing for autism has been built around how it presents in boys, meaning girls have often flown under the radar.
Even the first two major studies on autism were by two physicians, who studied significantly more young boys than young girls. The girls they did study showed visible signs of autism.
What Is Masking?
Studies have since found that many autistic females do something called ‘masking’– when an autistic person mimics behaviours from neurotypical people.
“It’s adjacent to being a woman in general, you just learn to conform. So, we just have to double conform, I suppose, to be like other girls and try and understand it,” Rachel explained.
“That’s why I’m passionate about journalism because it was actually, believe it or not, journalism that taught me social skills that was better than any social skills program that could be given to an autistic person,” she said.
“I was, you know, accused of making it up for attention because I didn’t look autistic enough because I guess I didn’t act like the autistic figures that we were shown in the media, which is so like male centred and so troped and sort of stigmatised,” Alice recalled.
“I think that’s why I’ve just suppressed it for so long and why I’ve been so silent about it because I just haven’t had any representation as to what an autistic woman is or how they act or how an autistic woman is supposed to be like,” Alice said.
Why Misdiagnosis Is Also So Common
Masking can also be extremely exhausting and damaging to an autistic person’s wellbeing and often can lead to burnout. It’s also another big factor as to why autistic women are often mis- or even un-diagnosed.
“I had the ADHD undiagnosed playing in the background the whole time. I think that also has made, you know, picking up the autism ADHD is complicated because the research shows it is inter-related.
And even to this day, right, I’m always learning which one is this and which one is that? And is this both or what?” Rachel told Junkee.
In all fields of medicine throughout history, gender bias has excluded women from research, and autism research has been no exception.
There’s been amazing work over the last decade to improve early diagnosis for women – our very own clinical psychologist Dr Michelle Garnett co-wrote a screening tool specifically for girls and women.
But as per the many personal accounts, we still have a long way to go to make sure women are offered the same level of understanding and inclusion in autism research.