By Cathy Wassell, CEO of Autistic Girls Network
Autism in girls has been much discussed in recent years, but while more people are now aware that girls may present differently, there is widespread misunderstanding about exactly how, and girls (and boys or non binary young people who present the same way) are still being missed both for referral and diagnosis.
Girls in the UK are still being diagnosed autistic on average 2-3 years later than boys and we know that masking autism and remaining unrecognised can damage an autistic person’s mental health, confidence and self-esteem. The issue isn’t a gendered kind of autism but a difference in presentation. Those who present externally are noticed and referred, but those who present internally are more likely to be quiet in class and never put up their hand. Their autistic traits 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 older children and young people who present in an internal way are being diagnosed autistic when they reach breaking point. Those who present internally are mainly (but not only) girls.
Why are girls particularly being missed for referral?
We tend to bring girls up with certain social stereotypes which mean they are less likely to be the noisy, boisterous ones, more likely to be sociable and make an effort with friendships. We also have stereotypes about autism – we tend to think of a white boy who is nerd-y and likes to line up trains. Autistic girls also have passionate interests but they tend to be more intense examples of the things all their peers like, which makes them harder to spot. Friendships are important to them, and they try hard to fit in with their peers. School may make them highly anxious though, and they may become situationally mute if they feel unsafe. This, along with a likely confusion over identifying and expressing emotions (alexithymia), will mean that traffic light strategies for anxiety are unlikely to work. Girls are more likely to become anxious to the point of being unable to attend school.
In our White Paper, Autism, Girls and Keeping It All Inside, we have an extensive checklist of ways to recognise an internal presentation of autism, divided into different categories. https://autisticgirlsnetwork.org/keeping-it-all-inside/
Being recognised as autistic is vitally important for self-identity. If you’re autistic, you’ve been autistic from the moment you were born. Autistic people who weren’t diagnosed until they were adults speak about knowing for many years they were different to their peers, but not understanding why, and blaming themselves for not being ‘enough’ or for seeming to struggle more to complete some tasks. Had they understood that they were autistic, those years of self-blame could have been avoided. It’s really important therefore to help autistic young people develop a positive sense of autistic – or neurodivergent – identity. That means being an ally and helping to remove the stigma around being autistic from society. In school it means a whole-school approach, educating all pupils about neurodiversity, the diversity of human brains, and how we can all experience the world differently in a multitude of ‘right’ ways rather than one ‘right’ way. We can all play our part.
How can schools support their autistic girls (including those as yet unrecognised)?
The Equality Act gives schools the responsibility to anticipate the reasonable adjustments needed to support their neurodivergent pupils. In order to anticipate need rather than merely react to behaviour caused by unmet need, schools need to understand their neurodivergent pupils, who – of course – are all different. This may mean commissioning assessments, and at AGN we believe a sensory integrated Occupational Therapy assessment is vital, but we recognise that as traded services this is a difficult situation for schools which are already financially stretched. Without that individual assessment of need though, you are essentially guessing and applying blanket policies.
Really understanding, monitoring and regulating emotions is so important to autistic girls’ emotional and mental wellbeing. Without this regulation, school days can become a spiky rollercoaster which will gradually erode wellbeing and make school feel unsafe. It can make the difference between a stable, productive school life with good attendance or dropping into a cycle of anxiety-based school absence. But emotional regulation should only be tackled with full knowledge of the way autism presents in an internalised way, interoception (the way you feel things in your body, eg. when your tummy feels full), sensory regulation and overload and alexithymia. Finding what things soothe (eg. pacing up and down, listening to music with headphones) and what things contribute to overload (eg. noisy classrooms, too much ‘peopleing’) are vital to self-regulation.
Relationships are really important to autistic girls. It will help greatly if there is a member of staff, or preferably a few, who they feel really understands them, listens to them and accepts them. Staff who can advocate for them and intervene when there is a situation caused by others not understanding their autistic needs are important. And it’s important too that autistic young people are given the confidence and the agency to self-advocate. But you can’t ask neurodivergent pupils to self-advocate if you don’t then listen to what they say and act on it. And you can’t ask neurodivergent pupils to self-regulate if you then stop them using their soothing techniques (unless it hurts someone). Responsibility goes both ways.
At Autistic Girls Network we think that we all need to upskill in knowledge about internal presentations of autism so that they can be spotted as early as possible, and certainly before transition to secondary school. Unsupported and unrecognised autistic girls in Year 7 can spiral into crisis very quickly, even though they may not have had many issues in Primary. Small primary schools can be great at building support around the child because they know them so well, so they are scaffolded through all their ‘quirks’. But all of this scaffolding rapidly disappears at secondary, and suddenly they are in a bigger, noisier, more crowded and unknown environment which can quickly feel like a scary, unsafe space. Let’s get autistic girls, and all young people who present the same way, recognised and supported much earlier to protect their mental health, and help them build positive autistic identities to carry them through all of life’s transitions.
You can find lots of resources on our website here: https:www.autisticgirlsnetwork.org/resources
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Cathy Wassell, CEO of Autistic Girls Network