This was it. This was where years of research and self-doubt had brought me; years of switching from pill to pill and doctor to doctor. It had been almost a decade of collecting diagnoses like BPD, PTSD, MDD, GAD, OCD, ADHD, Anorexia Nervosa.
Here I finally was, my eyes glued to a long list of my symptoms I had compiled on the note app on my phone, bouncing my leg as I waited to see my new psychologist. I had decided against adding subheadings and printing the list at the last moment so I could add to it if I remembered more symptoms.
And simply because I enjoy making lists. (Imagine sharing that with a classroom when your teacher asks what your hobbies are on the first day of school. Spoiler: you don’t. You lie, and because you’re bad at lying you end up saying something stupid like, “I like sleeping.”)
The list was as long as the years of wondering why I felt more alone in rooms full of people, screaming at myself in the mirror to “just be normal,” carving neat parallel lines into my flesh until “the right amount” of blood had trickled down my forearm.
After what felt like hours (it was 20 minutes), the doctor opened the door to her office, and I was ushered in. She nodded at me and handed me a stack of forms to fill. Not off to the best start, but I sped through them hoping we’d get to talk once I did my assigned work (I’ve always been a diligent student). Then she collected them from me and ushered me right back out the door – well she tried to. I took this as my cue to finally speak.
“I’d like to get tested for autism --”
She cut me off, laughing. “You can’t be autistic, you’re normal.”
Normal? What was that supposed to mean? “But I have a whole list of symptoms on my phone if you want to take a look--”
Apparently, this was funny, too.
“There’s no need for that,” she laughed, waving a hand in dismissal while the other opened the door for me.
I felt myself flare up with anger, but I knew there was no point in arguing as I drifted out of her office on autopilot. This wasn’t the first time I’d been told this. But this was the first time a licensed medical professional had laughed in my face while saying it. I really thought this time would be different. I thought if I prepared enough and tried to unmask, someone other than my roommate would finally believe me. I couldn’t shake the feeling that if I had been a little white boy rambling about trains, this encounter would have taken a completely different turn.
This is not an isolated occurrence, and not just for me, but for most autistic women all over the world.
Only eight per cent of girls with autism are diagnosed before the age of six, while 25 per cent of boys with autism are diagnosed before this age. Eighty per cent of women remain undiagnosed at age 18. These statistics do not convey the true intensity of the situation as they only consider autistic women who are eventually officially diagnosed, while most autistic women go their whole lives not receiving a diagnosis from a doctor. Many of us self-diagnose while others are still searching for answers for why they feel different from others.
Understanding autism
According to Dr Victoria Milner, a trainee clinical psychologist from King’s College London who investigates barriers to diagnosis and support for autistic women and girls, “Autism is a neurodevelopmental condition that is characterised by differences and challenges with social interaction and communication, in addition to restricted and/or repetitive behaviours and interests.”
It can affect nonverbal communication, like reading and enacting ‘appropriate’ body language. “Your face might seem expressionless even though you’re feeling things. And a lot of autistic people find it hard to predict what other people, particularly non-autistic people, might say, think or feel and what the consequences might be,” said Robyn Steward, an autistic person, researcher and author of The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype.
Autistic people also tend to take things literally, sometimes including idioms and figures of speech, because we have a very direct, straightforward communication style that may be interpreted as blunt or rude by allistics (non-autistic people) who are not as prone to just saying exactly what they mean.
For instance, when she was a child, Steward's mother asked her to put the bread in the toaster. “Five minutes later,” Steward recounted, “she asked me if the toast was done and I was like, ‘No, because you didn't tell me to press the button.’” Steward had followed her mother's instruction but didn’t understand what she meant (to toast the bread).
Many autistic people experience sensory differences, which could be taking in too much or not enough sensory information from one or all their senses. This can result in under-stimulation or overstimulation. We may engage in stimming, repetitive routines or try to find or create silence to cope with this.
A majority (75 to 90 per cent) of autistic people have special interests, usually on narrow topics, that they intensely focus on. Since autism is a spectrum, not everyone displays it in the same way or to the same extent. Different autistic people may have different struggles and different strengths.
Female autism phenotype
Women often present their autism in a way that differs from their male counterparts. This is often referred to as the female autism phenotype. There is no biological reasoning for this, but more so a social one, as Steward explained, “I would be more inclined to say that perhaps there's more of a feminine presentation of autism and a masculine one because I don't think your gender or biological sex necessarily determine how autism presents.”
According to Dori Zener, director of a mental health and peer support agency that works with neurotypical and autistic helpers to help individuals with their mental health, “Some people say there's no such thing as a female autism phenotype. It’s more like internalised autism versus externalised autism.”
Due to the way society conditions women to be obedient, get along with others, and suffer in silence, women tend to internalise their autistic traits more and more often than cis men. This tends to make their autism invisible to those around them and sometimes even to themselves.
In fact, autistic women camouflage and mask three to four times more than men. “Masking is, unconsciously or consciously, hiding autistic traits to fit society's expectations. On measures of self-report for autistic traits, women have scored themselves higher than when an external assessor is rating them,” said Sarah Murphy, a trainee clinical psychologist and one of the authors of a recent publication about seeking autism diagnosis for women in Australia. “Girls being quiet and keeping to themselves is often associated with being a good girl and might not be picked up on as different to what's typically expected, compared to a boy growing up with similar traits,” she added.
Why we fail to see autistic women
Mariam's* ability to mask was one of the fundamental reasons obtaining a diagnosis was difficult. “Being a woman, that too from a religious minority, would make me be a people pleaser in most social settings,” said the 29-year-old from Karachi who was diagnosed with autism last year.
This internalising of emotions often leads to the development of mental illnesses and unhealthy coping mechanisms, such as depression, anxiety, eating disorders, and self-harm. In comparison to the externalised hyperactivity, agitation, and breakdowns that autistic men are more likely to portray, these internalised manifestations of autism in women allows them to fly under the radar.
Autistic women don’t tend to see themselves in the media, and neither do the people around them. This includes parents, teachers, pediatricians, and general physicians: the people we rely on to refer a child to a psychiatric expert for said diagnosis. “There is evidence that shows when presented with a vignette of an autistic character, teachers are more likely to suggest the character is autistic if they are told the character is male, compared to when they are told the character is female,” said Dr Milner.
“An autistic girl may be considered “shy” when she experiences difficulty making friends, whereas an autistic boy is more likely to be recognised as having social difficulties and subsequently be offered support,” she adds. This leads to many autistic women, myself and Mariam included, straight-up being told that we “can’t be autistic.”
This gender bias is present in the world of research and health care itself. According to Murphy, our conceptualisation of autism historically has been around male dominated samples, researchers, and doctors and it is based on these populations that our diagnostic assessment tools have formed. “In the past, there was a theory that autism was like this extreme version of the male brain which doesn't necessarily hold water. But I think that says a lot about how we think about autism and gender,” she said.
One of my favourite parts of being autistic is my special interests. I love how I can focus my undivided attention on them for hours at a time on a regular basis (despite my ADHD) and be able to derive pure joy just from learning more about the topic or even just hearing someone mention it in passing.
My special interests, however, are also part of the reason my autism manages to remain undiagnosed. The special interests experienced by autistic women are more commonly relational in nature, compared to more physical or mechanical interests experienced by autistic boys and men (sorry to bring up trains again).
Similarly, there is some evidence to show that autistic girls’ interests are more often similar in topic to their non-autistic peers, but their intensity and duration may be what sets them apart from “neurotypical” interests. “I always kept socially acceptable special interests like food, cinema/filmmaking, makeup,” shared Mariam.
“So, an autistic girl might be really interested in Barbies, but the way that they engage with them is different. They might line them up around their bathtub as opposed to playing with them and interacting with them,” said Zener. Autistic women may also have a person such as a celebrity like Taylor Swift as their special interest but because women who are interested in such things are often dismissed and stereotyped as “crazy fangirls,” it makes it hard to pick up on the difference between being a fan and having a special interest. “
Nearly 80 per cent of women with autism are misdiagnosed – often with conditions such as borderline personality disorder, eating disorders, bipolar disorder and anxiety. Some of these labels are helpful because they help shed light on a part of the picture. But other labels can be harmful and can dissuade women from seeking the services and support that we really need.
Doctor’s lack of knowledge about autism in women and even autism in general in Pakistan can also manifest in other ways. “The misconception that my therapist had about autistic people that they don’t have empathy delayed my diagnosis. When actually I’m hyper empathetic because of autism,” said Mariam. Her stimming has often gone under the radar and not qualified as such because it is subtle, such as skin picking or knuckle cracking. Most doctors recognise the more obvious stimming displayed by men.
Importance of early diagnosis
A lot of the dangers that come with getting a late diagnosis stem from psychiatric professionals being unable to provide their patients with the proper care because they don’t know they’re autistic.
Even if autistic women are not misdiagnosed with other conditions, not receiving an autism diagnosis increases their chances of developing depression and anxiety disorders, due to the isolation and negative self-perception that comes with not being understood and going through life thinking there is something fundamentally “wrong” with us. “When you know you have autism and you can be part of the autism community, that can really help, because (autistic) people older or more experienced than you can point you towards resources and information,” said Steward. Being diagnosed and learning about autism has allowed her to heal old wounds. “All my lifelong struggles finally make sense now,” she says.
Stigma hurts, misdiagnosis may be fatal
Autistic people are six times more likely to commit suicide than non-autistic people, and autistic women are twice as likely to die by suicide than autistic men, but the population with the greatest risk of suicide are women who mask and camouflage more. “Imagine all day long you’re acting in a way that is not yourself. It's very invalidating and it takes a huge amount of effort and energy,” said Mariam.
The sources and the language around autism awareness in the past have been hugely stigmatising, misleading, and negative. Receiving an early diagnosis is not always helpful unless you can positively frame the diagnosis. “I met younger girls, between the ages of nine to 18, who say they hate their diagnosis, and they reject it outright because they think that being autistic means that there's something wrong with them. A lot of them will say, that means my brain is broken. That means that no one's going to love me. There are so many horrible stereotypes about autism that create a stigma,” said Zener. “I think what needs to change is the people who are giving diagnoses need to get rid of the word disorder at the end of the autism spectrum. Call it a condition.”
This positive, inclusive, diverse, and more accurate awareness is being seen on social media. “You can go on TikTok now and understand what autism is just by watching a ten-second video,” Zener said. “There are great books now that are written by autistic women. So, I often say, if you want to learn about autism, go to the source. Really listen to autistic women's stories,” she added.
Most schools, universities and governments do not accept an autism diagnosis if it is not from a doctor, and so self-diagnosed autistic women (who make up the majority) are not eligible for the support they need.
If any progress is to be made, the diagnostic tools for autistic assessment need to be made more gender inclusive, receiving a diagnosis needs to be made accessible and most of all, autistic women need to be listened to and believed – even if we don’t like trains.
*Names have been changed to ensure privacy