Autism and Girls

How autistic girls present differently

The topic of autism and girls has been much discussed in recent years, but while many are aware that autistic girls may present differently, there is widespread misunderstanding about exactly how. This is a huge issue because autistic girls (and those who present in the same way) are being missed and outcomes for autistic females are particularly poor.

How many people are autistic?

Official statistics still say that 1 in 100 people in the UK are autistic, but these figures are out of date. Official US figures from the Centers for Disease Control and Prevention (CDC – though autism is neither a disease nor should it be prevented) now say 1 in 36 but this is based on 8 year olds, and as we know all too well at Autistic Girls Network, many people are diagnosed as autistic after the age of 8. In fact 80% 0f autistic girls remain undiagnosed at age 18. Official figures in Northern Ireland are 1 in 20, and in Japan 1 in 30. Recent research in the UK points to much closer to 1 in 30 than 1 in 100. So all we can really say with certainty is that there are more than you think! This is not because autism has become more prevalent but because it has become better recognised.

Diagnosing autistic girls

Girls in the UK are still being diagnosed autistic up to 6 years later than boys though. Given what we are coming to understand about the damage a late diagnosis and subsequent camouflaging of autistic traits can do to an autistic person’s mental health, confidence and self-esteem, this is a statistic which needs to change fast. But girls aren’t diagnosed later because there is a female phenotype of autism (there isn’t), they are missed for complex reasons the largest of which are masking and presenting internally

Autism, girls & keeping it all Inside

What do we mean by that?

When we talk about an external presentation of autism, we mean one that is probably more recognisable to the majority of people where the person behaves in a way which is visibly different to their non-autistic peers. They might stim (move, perform an action or make a noise in a repetitive way) by rocking or flapping their hands, they might be non- or minimally-speaking, they might exhibit distressed behaviour. As a generalisation, children brought up as girls don’t tend to present that way as much (but some do and if they do, they are probably diagnosed earlier). Their autistic traits (and those of some boys and non-binary young people) are camouflaged and internalised to help them fit in with their peers, which can be a conscious or unconscious decision to avoid the stigma of being autistic. However, masking comes with a high cost in terms of mental health and keeping a strong sense of identity, and it’s no coincidence that children and young people who present in an internal way are being diagnosed autistic at the time – and because – they have reached breaking point.

The difference in diagnosing Boys vs Girls

The assessment tools used for diagnosis and research in the field of autism have almost always been developed from research using predominantly male samples. Girls and women need to be struggling more than male peers to get a diagnosis, and it can take 6 years longer. In our Facebook group, we did a survey to find out how long autistic women and girls had waited from the point of referral to the point of diagnosis, and the longest wait was 20 years! We’ve also recently had a woman in her 80’s join the group who had just been diagnosed after she recognised herself in her newly diagnosed grandchild.

In the UK, there is a wide geographical difference in how likely girls are to be diagnosed. Some areas have a ratio of 1 girl to 30 boys, while others have a ratio of 1:2 (Roman-Urrestarazu, 2021). This is not just a statistical anomaly, rather a difference in how diagnostic teams recognise autistic girls. There is research suggesting that more women are referred for diagnosis as adults than men, which implies that more girls are being missed (Happé et al, 2016).

Girls and Passionate Interests

Autistic traits in girls are frequently missed, overlooked, ignored, or their behaviour put down to “just being a girl”. An autistic girl having a meltdown is said to be emotional and hysterical (a word historically only demeaning to women), because that’s how girls are stereotyped to be. An example of this may be an autistic girl who struggles with dirt because of the texture and the idea of it, yet may be praised because historically girls were expected to be clean and tidy, and not messy. This is where societal expectations of women and girls (North, 2021) can create barriers to recognising, understanding and supporting autistic girls. Autistic girls may have passionate interests which are viewed as more socially acceptable than the ‘special interests’ of their male counterparts. For example, animals and reading are common passionate interests amongst girls, alongside others.

The common stereotypes of autistic people as liking trains or other more stereotypical male interests may not be true for many autistic girls. They may spend long hours drawing or reading, but because these are deemed acceptable interests, they are not picked up on as ‘special interests’ and an autistic trait. It’s also important to realise that trying to fit in with non-autistic friends, and studying how to behave and what to say in order to fit in, can become a passionate interest on its own. Autistic girls, much like other autistic people, may engage in different repetitive behaviours. This may not look like lining up objects or repeating words out loud (known as echolalia), although it could. It may instead look like re-reading the same book or re-watching the same film over and over again because it provides a sense of comfort and predictability. It may involve re-doing homework until it’s ‘perfect’ (as it is common for autistic girls to be perfectionists), or repeating a certain behaviour which is comforting to them.

Anxiety and other Mental Health Issues

Autistic girls, and boys or non-binary young people, who present in an internal way may tend to internalise problems too, and this can cause damage to their mental health which is already in peril from camouflaging their autism. It can lead to increased anxiety and situational mutism (being unable to speak in situations which cause high anxiety or feel unsafe). Because this is an internal behaviour and is not a core feature of the diagnostic criteria of autism, despite being common in the cohort we’re looking at, it can also cause these young people to be misdiagnosed if the assessor doesn’t understand internal presentations (Hull, Petrides and Mandy, 2020).

Anxiety can be a major part of an autistic girl’s everyday life, especially when they are masking and trying their best to fit in. This may mean that they keep it together all day at school, so to teachers there doesn’t seem to be a ‘problem’. This emotion and anxiety may all be released in meltdowns, shutdowns or anxiety attacks when they get home. This build-up of anxiety can cause anxiety based school avoidance, (often called school ‘refusal’, but that implies a choice – there is no choice when you are so anxious). It could also cause situational mutism. Persistent absence from school and situational mutism might be put down to ‘behaviour’ in a child not yet recognised as autistic, but it may be a sign that needs to be understood in the context of anxiety and autism.

Friendships and Socialising

Friendships can be very important to autistic girls and also cause a great deal of anxiety, especially if there is conflict (Sedgewick, Hill and Pellicano, 2019). Autistic girls may be extremely sociable or chatty, or very shy and isolative. It is common for them to have one or two strong friendships, but struggle socialising in groups. This may not be obvious though, as they may have learned to mask their difficulties well. Unfortunately, feeling left out and being bullied is a very common experience for autistic people at school, and even in the workplace in adulthood. Interviews with autistic women identified that a common theme was to not really feel as if they fitted into the friendship group, and for the friendships to easily drift away or peter out in conflict (Milner et al, 2019). Others felt that they had more difficulty keeping friendships than making them in the first place, but however lonely they sometimes felt or however difficult the friendships became to navigate, all respondents in the study wanted friendships above all.