We now know with some confidence that autistic girls have mostly been left without a diagnosis. Historically, it was thought that autism simply had a higher prevalence among boys. Estimates of the ratio of boys versus girls being diagnosed vary from 2:1 to as high as 16:1 in some studies. The National Autistic Society says that the ratio of boys to girls supported in its schools is around 5:1.

That discrepancy is mostly down to the fact that the original researchers who looked at autism, in particular Hans Asperger, focused far more on boys. Subsequently, many of the diagnostic tools used to identify autism failed to diagnose girls. This created a feedback loop whereby boys were increasingly diagnosed while all but the most obvious cases of girls with autism were overlooked.

Inevitably, this led to a dearth of research into the impact of autism on girls and women, as Dr Felicity Sedgewick from the University of Bristol explains: “Researchers would say, ‘There are so few autistic women - we don’t need to focus on them.’ It’s only really been in the past 10 to 15 years that people have started looking at autism and how it impacts on women.”

Sedgewick, based in the university’s School of Education, is one of those trying to help the research catch up. She says that the main barrier to supporting girls with autism is still diagnosis - even with a greater awareness of the condition and more research, it is still easy for professionals to “miss the signs”.

“Autistic girls are generally very quiet in class but get good grades and so appear to just be interested in their studies,” she explains. “Compared with autistic boys, girls tend to camouflage their feelings and internalise everything.”

Hiding in plain sight

While there is no set rule for every autistic person, Sedgewick says a good example of how girls do this is the way they get around the problem of looking someone in the eye, which can be challenging for autistic people. Girls may learn to look at the forehead, so it seems as though are making eye contact when they are not, she explains.

Another tactic many autistic girls adopt is to carefully gauge reactions to jokes and other classroom “moments”, mimicking what others do in order to blend in and avoid “detection”.

This camouflaging ability tends to be utilised at school and in other social environments. In the home, families see more traditional evidence of autistic behaviours. This creates a difficulty when parents raise their concerns at school, Sedgewick explains.

“Lots of families run into this issue of teachers saying, ‘Well, she’s fine at school’, and highlighting that they’re getting good grades so they don’t see any issues,” she says. “But parents are seeing their daughter getting home and having a more stereotypical meltdown because they have spent all day suppressing and masking their feelings.”

This disparity between home and school is particularly problematic because, without evidence of “a pattern of behaviour in different settings”, it can be hard to get a diagnosis from clinicians, Sedgewick adds.

Furthermore, she says, even when clinicians do get involved, girls with autism are often misdiagnosed with other conditions, such as depression or anxiety, the symptoms of which are caused by the constant attempts to “fit in” related to their autism. This means the real problem is not dealt with - and the situation can last for years. Indeed, many women receive a diagnosis only in later life, often after taking their own children to be assessed and realising that they have many of the same behaviours.

But why do we need to put a label on these girls? Sedgewick explains that receiving a diagnosis is a hugely important moment for an autistic person, helping them to understand themselves and their condition, and to receive the support they require that will benefit them for the rest of their life.

In a research paper by Sedgewick, many women with autism said they got better at understanding social situations, friendships, workplace politics and romantic relationships partly because they had received a diagnosis.

“Although many autistic women experienced ongoing social difficulties, they had gained confidence in handling these difficulties …through learning from experience and exposure to social expectations, combined with learning what was best and most appropriate for them as individuals: a level of self-knowledge that was often linked to gaining an autism diagnosis,” she explains.

Clearly, then, it is important to identify autism as early as possible.

Sedgewick’s research aims to contribute to that effort. Her focus is on girls with autism in schools and how they develop friendships when compared with autistic boys and neurotypical girls. In a recent study, she interviewed 27 autistic girls, 26 autistic boys, 26 neurotypical girls and 23 neurotypical boys, aged 11 to 18.

A central finding was that autistic girls, much like neurotypical girls, “had close friendships based around emotional sharing, talking and time together”. However, she also found that “autistic girls have fewer of these close friendships than neurotypical girls, tending to have one or two intense friendships because they found [friendships] more hard work”.

Focusing on a few intense friendships is usually fine when things are good between the individuals, but it can quickly become problematic. “If something goes wrong with that friendship, there are few other friends to fall back on,” Sedgewick says, adding that any falling out can be hard to patch up.

Social challenges

While the ups and downs of friendships and social groups are part of school life, they can have a particularly significant impact on autistic girls, who usually don’t have the same understanding of how to tackle these situations as their neurotypical peers.

“Autistic girls are far more black-and-white in their conflict resolution,” says Sedgewick. “They either think ‘It was their fault, they know how upset I am and it’s up to them to fix it’, which means they can get a reputation at school as being difficult with other girls, and then feel isolated. Or, conversely, they think ‘This is entirely my fault and I have to fix it, no matter what’, and this can leave them open to manipulation.”

This is compounded because, while the bullying of boys is usually physical and overt - allowing teachers to recognise that something is going on and deal with it - bullying of girls is often less visible.

“Things are said behind their back, they’re left out of events and so forth, and it can be hard for teachers to see this happening,” says Sedgewick. “Autistic girls often struggle to know how to counter bullying and build themselves up again. Most girls in school end up on the receiving end of some form of bullying but are able to shift it away. But for autistic girls, it’s a lot harder.”

These signs, and the camouflaging discussed above, are subtle indicators of autism. As such, it would be a tough ask to expect a teacher to spot them, given that many other children need their time and focus. However, certain types of behaviours may provide more obvious clues.

“Someone who responds to a clearly rhetorical question with a literal answer - which may even sound flippant and out of character as a result - [that] could be an indicator of autism,” Sedgewick says.

Perfectionism to the point where a girl might seem uncomfortable even starting an exercise is another potential indicator.

But for teachers, overall, it is about being aware of all the above factors so that if parents do flag up an issue, or behaviour does become concerning, autism can be considered as an option.

If a teacher does suspect that a girl is displaying autistic tendencies, Sedgewick says it’s important to raise this through the appropriate channels, usually via a special educational needs and disability coordinator (Sendco) or relevant member of staff.

Teachers might not be able to do much more at that early stage. However, a diagnosis can take a long time - sometimes as much as three years - and Sedgewick says there are simple ways in which teachers can support girls they think may have autism.

Practical tips

Written instructions for an assignment are helpful so that the pupil with suspected autism does not have to remember a lot of information at once. Providing “processing time”, even just 10 seconds at the start of an exercise, is helpful, too, allowing them to properly understand what is being asked.

This can help to prevent girls feeling overwhelmed and stressed, particularly if others around them appear unconcerned by the task as it is being explained.

In addition, Sedgewick warns that answering questions in front of the whole class can be very intimidating, so it’s best to keep any interactions on a smaller scale while still giving the pupil a chance to be heard.

“Maybe ask them questions in small-group settings after they have had time to talk in the group, so they know what others think and they will feel more comfortable discussing ideas,” she suggests.

Reducing the level of sensory stimulation should also be considered: “You should definitely warn the class if you are going to show a video, especially if it has lots of flashing images.”

These are, admittedly, small suggestions for a large issue. But as the history of autism and girls shows, progress can be slow - although things are getting better. The hope is that, as understanding and diagnosis improve, more girls will benefit from the right support.

Dan Worth is a content writer at Tes

This article originally appeared in the 19 July 2019 issue under the headline “Tes focus on… Helping girls with autism”