The danger of missing girls with an autism spectrum condition
In a school setting, we know that the Covid Pandemic has caused havoc for our vulnerable pupils, both in terms of those with a SEND diagnosis and for those with poor mental health. The pattern that I keep seeing and hearing about in schools is the potential to miss diagnoses of girls who are also emerging school “refusers.” It’s as if girls who had previously been able to “mask” their autistic traits, now have no other armoury to hide behind, and Covid enabled them (in some cases) to experience home learning where there was a great deal of control in the schedule, a comfortable home setting and little to no social interaction to challenge their emotional regulation.
So is it that girls just hide their autism traits very, very well?
According to the NHS, there are about 700,000 people on the autism spectrum in the UK. There seems to be a real gender bias in the diagnosis of autism, and when it comes to “high functioning autism”, known previously as Asperger’s Syndrome, the diagnosis ratio was 10:1, male to female. However, there is growing evidence that the number of girls and women with the condition may have been vastly underestimated. Recent research, based on active screening rather than clinical or school records, found a ratio of 3:1. This work was carried out by Prof Francesca Happé, director of the Social, Genetic & Developmental Psychiatry Centre at King’s College London. In a recent interview with the Guardian newspaper, she warned that the failure to recognise autism in girls and women was “taking a stark toll on their mental health”.
Happé actually believes this could fall further – potentially to as low as 2:1 – as diagnostic processes become better tailored to identifying autism in girls and women. If the real ratio were shown to be 3:1, this would suggest that up to 200,000 girls and women with autism have been omitted from the national tally. What a terrifying thought.
Autism traits are actually evident from the early years if you know what to look for.
When I carry out an initial session with a child and try to get a full holistic overview of their weekly routines, family life and likes and dislikes, this helps me to start to uncover the learning needs they are potentially masking. Are they covering up a difficulty very well by simply imitating the behaviour of their peers? Or is it just that they are far too busy outside of school to keep up with their school work and friendship groups inside of school? Do they live in two homes due to family separation which makes them feel unsettled or overly anxious?
There is actually so much that goes on in the life of each child that we need to take into consideration, in order to get a full and detailed picture of need. This also involves speaking with parents, or at least asking them some basic questions. The parallels of later than usual speech acquisition and development in children with autism is nothing new. But were you aware that many children don’t even speak in sentences until they are 4 years old? In some cases, they also demonstrate little to no pretend play in their early years with other children or even alone. Furthermore, even young children can have almighty meltdowns, and we’re not talking meltdowns of the standard two year old type! Often, parents of young children who are at high risk of an autism diagnosis will have several meltdowns a day. This truly is a red flag.
There can also be other signs, like lining up stuffed animals incessantly, spinning in circles, flapping arms when there is an emotional upset, or a child could be constantly seeking some sort of sensory input. Many young children with undiagnosed autism will also be unable to handle any change in routine.
In the UK, our model of diagnosis is much more suited to boys than girls.
Autism is a developmental disorder that is marked by two unusual kinds of behaviour deficits. Our model in the UK focusses on deficits in communication and deficits in social skills. Pair these behaviours with restricted or repetitive behaviours and a referral should be made as soon as possible to a qualified practitioner via a GP. Girls get a diagnosis much less frequently, but the signs are much harder to spot and they are much quieter in the waythey present themselves. Girls’ behaviours don't even necessarily show as much repetitive or restricted behaviour. But girls can still have excessive interests in things like horses or dolls, the issue is that these interests are not unusual even in neurotypical girls.
Girls are also much more likely to control and adapt their behaviour in public, even from a really early age. It's simply never as obvious to an untrained eye.
Girls innately adhere to parental expectations much more easily than boys (don’t shoot the messenger here for this huge generalisation!), but as a result of this, parents and teachers don't catch the differences quite as easily. Another misconception is that a child with autism will not be able to maintain eye contact, in fact this is the most common trait that is identified by teachers in training. Actually, girls quite often will have better eye contact and they are often more socially capable. It can be a much more subtle presentation, and sometimes it takes a developing trust and lots of time spent together in a 1:1 school setting for the mask to be removed, and the true traits to reveal themselves. Time is your friend if you are trying to rule out autism in a female student, whatever their age.
When we miss a girl with autism, or we mis-diagnose, there are repercussions for that child later in life.
Girls who struggle with undiagnosed autism often go on to develop high levels of depression, anxiety and very low self-esteem. Due to the way that they are able to mask their behaviours, specialist clinicians and GPs may not necessarily investigate “underneath” these mental health issues to really see the social dysfunction that is going on below the surface behaviours.
The bottom line is, girls tend to “get by” and they will just try to go along with and copy behaviours they see their friends exhibiting. Commonly, girls in primary school are likely to be missed unless they have a more severe form of autism, but once they get to high school, it tends to start to show as a problem by year eight or nine.
The move from primary school to secondary school is tricky to navigate for any child regardless of an underlying additional need. Navigating new, changing and emerging friendships is a challenge that most of us can remember being difficult and at times, upsetting. Teenage girls or pre-teen girls have very intricate friendships in how they behave socially. As parents and teachers, we know first hand how difficult the relationships can be between pre-teen and teenage girls; imagine how complex this is for a child who is masking an autism diagnosis, and who actually doesn't really understand the nuances of how to behave socially within their peer group? It’s not usually too long before their peers realise they are “quirky”, “a bit weird” or if they’re slightly kinder, “just a bit different”.
So, autistic girls may be bullied simply because they're different.
Girls with autism miss social cues but just like any child, they really want to be liked. In some cases, their autism can make them vulnerable in some ways and certainly more naive in a social context. This makes them really easy prey for someone who might be trying to take advantage of them, whether that's a known bully, or just a boy who takes the “banter” too far at break time. Girls with undiagnosed autism want to be friends and have a social friendship group; they want the interaction, but they don't really understand what it's all about and how to create these outcomes naturally. Specifically, they do not understand which social cues they might be missing, or how to fix these challenges without significant support.
In my professional practice, I've seen is poor mental health, depression and anxiety - along with low self-esteem - in nearly every child who has had a special educational need undiagnosed.
But this is particularly the case with pupils with autism. In reality, they work so hard to fit in that it actually wears them out emotionally and mentally. Very often, fellow teaching colleagues report that girls with autism are noticed because of the social issues or the depression that they experience. Depression is much more common among high functioning pupils who are on the autism spectrum. So often, they might be picked up by the pastoral team or by a teacher who has a good relationship with them. Most commonly they will be noticed for a persistent low mood or poor school performance. Then when the experience and behaviours are investigated at a deeper level, it becomes clearer that they have restricted interest and difficulties with social communication.
Other common difficulties in girls with undiagnosed autism are sensory challenges and a link between autism and eating disorders.
Sadly, eating disorders are at an all-time high, and obviously this is not simply down to undiagnosed additional learning need in all cases. But imagine a girl in a cafeteria at lunchtime, who struggles with sensory overload and who also has to deal with masses of people jostling for the food counter and excessive noise, who then needs to deal with food choices and the unknown tastes and textures of food. This girl is likely to demonstrate an aversion to food, even if she is just observed as “being a picky eater” in the first instance.
Isn’t it better to be aware of the signs and rule autism in or out as early as possible if we are in any doubt?
Missing a child with very subtle traits of autism is so easily done, but we can continue to educate ourselves on the nuanced behaviours that girls with autism exhibit both at home and in the classroom.
We are all aware that the national waiting times for autism referrals are longer than they have ever been in history and this makes our predicament even more difficult to manage. However, we can still put the appropriate support in place in school. We can truly get to know the child as the teaching professionals that we are; we can help our pupils with traits of autism to identify their triggers; we can help them to identify the things that really upset them and we can help our pupils with traits of autism to explain to us how they see things from their perspective.
In my experience, these conversations are inspiring, interesting and enlightening. As SENCos and teachers, we have a responsibility to meet each child “where they are”. What better way to do that, than to develop a strong working relationship with our pupils with undiagnosed (potential) autism and to support them as best we can in our school settings. Once we really know the individual child, it becomes so much easier to anticipate their needs and to educate our colleagues with the knowledge we have.
We are in a privileged position, so let’s make the most of it!
You can access Autism screening tools, autism checklists and training on how to support pupils with Autism inside the SEN Buddy membership. You can join for free for 14 days, and then our subscription is just £15 a month for individuals (cancel anytime). School subscriptions are also available.
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