Why do women often go undiagnosed with Autism Spectrum Disorder?
I met someone recently who told me she’d struggled with feeling disconnected, different, ‘odd’ her entire life. She was 54 years old and, after watching the brilliant Christine McGuinness: Unmasking My Autism, on BBC in 2023, set about seeking an autism diagnosis for herself. Christine McGuinness, married to TV presenter Paddy McGuinness, is mother to three children, each of whom has been diagnosed as autistic. It wasn’t until she was 33 years old she received her own autism diagnosis, and so much of what she says and learns in the documentary about her autism rang true with the lady I met, that she realised she too had been living a masked life and the relief she felt when she was diagnosed, and understood that she wasn’t ‘weird’, or ‘odd’ and that the ‘little quirks’ her friends and family just accepted about her (and strangers didn’t) were symptoms of something quite significant.
While her life hasn’t changed dramatically since, the way she feels about herself has, and the pressure she places on herself has been lifted too - for example, now when she’s feeling overwhelmed she accepts it and takes herself off and away, rather than trying to cope. In her workplace her colleagues are kinder, less impatient, and celebratory of what she brings to the team, no longer focussing on what she doesn’t. Life is easier and she no longer feels ‘wrong.’
In the last ten years the number of autism diagnoses has doubled - a reflection not of an increase in children with autism, but with the increased public and clinical awareness of autism and how it presents. This increase in diagnoses includes a significant number of late, adult, diagnoses, providing I am sure immense relief to many adults who have borne the stress of feeling, and being, ‘different’ but not understanding why. However, there is another interesting fact that accompanies this rise in diagnoses - researchers noticed a massive prevalence in favour of male diagnoses of ASD, with an almost 5:1 male-to-female ratio.
Why are more boys and men diagnosed as autistic than girls and women?
Is it because more males than females have ASD? Or is it because the diagnosis criteria has a male bias?
Actually, having read many articles on this, I believe that the answer doesn’t lie firmly in either of the above potentials. It’s both more simple and more complicated - girls and women go under-diagnosed simply because they aren’t put forward, or put themselves forward as adults, for diagnosis.
It’s true that for many years clinicians saw autism as a largely male issue, dismissing similar symptoms in girls as more to do with parenting than neurological differences. However, it is also true that girls tend to be better at ‘blending in’, at covering symptoms and effectively hiding in plain sight, particularly as they age. This has led to the criteria for an autism diagnosis becoming based on a very male model, which over time feeds itself with more males diagnosed than females, even when the same symptoms occur - yes, even here stereotyping comes into play.
Susan F. Epstein, PhD, a clinical neuropsychologist specialising in ASD, says: “So where the boys are looking at train schedules, girls might have excessive interest in horses or unicorns, which is not unexpected for girls,” Dr. Epstein notes. “But the level of the interest might be missed and the level of oddity can be a little more damped down. It’s not quite as obvious to an untrained eye.”
It’s not news to say that male and female brains operate differently, allowing each of us to bring different strengths to the home and workplace. This can be summarised by the Empathising-Systemising Theory (E-S), which suggests women typically have a drive to empathise with people and their needs, while men have a stronger drive to systemise and build rule-based systems.
The E-S Theory has been taken a step further, with the Extreme Male brain Theory (EMB) which suggests that people with ASD take on an extreme profile of the typical E-S male, and have a more masculine brain type. Therefore, men would need smaller psychological and physiological changes to present with ASD than women, making them easier to detect - such as the obsession with train timetables v unicorns, for example.
It’s also true that the female, empathetic brain type, leads females to mirror those around them, quickly learning that by copying or reflecting the behaviours of those around them, makes everybody happier, which is pretty much how we all operate, isn’t it?
Wendy Nash, MD, a child and adolescent psychiatrist, adds that girls are more likely to control their behavior in public, so teachers don’t catch differences. “A lot of autistic girls get ruled out because they may share a smile or may have a bit better eye contact or they’re more socially motivated. It can be a more subtle presentation,” Dr. Nash explains. “If girls are socially interested but odd, which is the case with the majority of these girls, she adds, “I think people give them a pass.”
What to do if you think you may be autistic
In the UK, it can be a long and drawn out process to gain an autism diagnosis. It’s quicker for those with private health care, but if you do follow this route, take care to stay with the specialists your provider recommends - there are an increasing number of businesses giving fast, unsafe autism diagnoses not recognised by the NHS or social services.
In the first instance, visit your GP. Before you go, write a list of your concerns and the symptoms you display that would fit with a diagnosis. You can then be referred to a specialist. This can take a while, the NHS mental health system is seriously overloaded and emergency cases and children will always take priority.
While you're waiting for an assessment, do your own research and seek out support groups that can help you understand your symptoms and potential diagnosis, and help with advice and ideas on how to alleviate the pressures you feel. Also make an appointment with your HR team. They are there to listen and advise on the company’s policies around autism, and how they can make your working life more comfortable.
Finally, there are a number of really excellent online resources that offer loads of information and advice. Visit:
NHS - how to get diagnosed