In 2018/2019 3 in every 100 school-aged children were diagnosed with autism in the UK, this is a huge number of young people. These children show difficulties in communication, relating to others and thinking flexibly, all of which massively impact their lives. The degree of difficulty these young people have in these areas ranges extensively. This is part of the reason autism is referred to as a spectrum of conditions.

The presentation does not just vary between each individual but, also, with gender. It is thought that there is a specific presentation for girls which is not seen in boys known as the ‘female phenotype’. A phenotype is a set of behaviours or characteristics which is seen in a certain population, in this case the ‘female phenotype’ refers to a common set of behaviours in females with autism. This phenotype is thought to be part of the reason that the gender ratio in diagnosis for Autism Spectrum Condition (ASC) is 1 girl for every 3 boys. This is because young girls can often mask some of their communication difficulties while showing other characteristics which aren’t commonly picked up during assessments for ASC, causing young girls to miss out on support that they need.

What is masking?
Masking in ASC is a number of strategies that those on the spectrum use to avoid other people noticing their autistic traits. An example of this would be someone with ASC looking in between someones eyes to create the illusion of eye contact while not making themselves feel uncomfortable. It should be noted that although this behaviour is much more common in women it is also sometimes present in men.

Some parents in the ASC community are uniquely placed to talk about this subject, those who have both a son and daughter with ASC. They know better than anyone how gender affects the experience that their children have with ASC.

Sarah-Jane and Elizabeth

Sarah-Jane Critchley writes about her daughter’s (Elizabeth Critchley) experience growing up with ASC in the book “Education & Girls on the Autism Spectrum”, in which, she details her own as well as her daughters experiences over the past couple of decades (Hebron and Bond, 2019). Sarah-Jane talks about the difficulty she had in getting a diagnosis for her daughter 10 years ago. Sarah-Jane discusses the huge number of professionals her daughter had to visit while growing up. These professionals each assessed Elizabeth through their own narrow lense, providing a host of diagnoses but failing to adequately capture the difficulties Elizabeth was experiencing. 

Sarah-Jane describes how these experiences with professionals ‘nearly broke’ her in terms of her own wellbeing over the years. Although each new diagnosis helped to explain parts of Elizabeth’s difficulties, none of them captured enough of Elizabeth’s needs to help support her fully. It wasn’t until relatively late on in her education that Elizabeth received her diagnosis of ASC, at the age of 17. Elizabeth went through the majority of her education without the support that an autism diagnosis can provide. 

 

Why is autism in girls consistently missed?

Autism is often misdiagnosed or missed altogether in females because of one simple reason, females often present differently than males. When this is combined with the fact that the vast majority of the tests and assessments used to identify ASC are based on the male presentation, it is not hard to see how this has become a problem.

Parents are often faced with the problem of being turned away by professionals who are not specialised in the female presentation of autism. This is especially the case if they are not familiar with ASC themselves and don’t, or can’t, persist and insist that their child does have ASC, highlighting their behaviour.

To compound the problem even further, these symptoms are often hard to highlight as girls will mask their social difficulties through modelling others behaviour. As well as this, according to a study conducted at Stanford University in 2005, girls with autism seem to have much less repetitive and restricted interests and behaviours than those seen in boys.

Unfortunately, the current research investigating how girls with ASC present is few and far between. However, one large study helps to give us some idea of how girls with ASC may present in comparison to boys:

• Difficulty interacting with other people
• Less of an ability to adapt to new situations in comparison to boys
• Less likely to become hyper-focused on a single activity in comparison to boys
• More emotional difficulties

It is important to remember that Autism is a spectrum condition however and, as such, this is not a checklist which all girls with ASC will fit. It is also important to remember that girls can present in similar ways to boys, such as:

• Avoiding eye contact during social interaction or looking through others instead of at them.
• Aggressive behaviour beginning around the age of 2.
• Generally delayed language and communication ability.
• Inability to begin or maintain conversation with others.
• Difficulty in reading non-verbal behaviour and facial expressions.
• Repetitive movements and behaviour such as tapping or rocking back and forth.

 

First hand experiences of ASC from mum

I recently had the opportunity to talk to a parent who has had both their son and daughter diagnosed with ASC. She has had a unique experience in that she has seen first hand the diagnostic process, the practical outcomes, and the emotional outcomes for both her son and daughter in relation to ASC.

Yuz is a mum from Australia who has been on a long journey with both her daughter and son. Although both of her children are now diagnosed with ASC, getting to where they are now took determination and a lot of research. Yuz’s daughter was originally diagnosed with Generalized Anxiety Disorder (GAD) after struggling socially and having difficulties with insomnia in February of 2017. Yuz spent months afterwards supporting her daughters emotional needs and trying to help her develop socially. It wasn’t until a little while after that her friend directed her to resources on female autism when Yuz began to suspect there might be something else behind her daughter’s behaviour.

From here Yuz searched hard for psychologists who were familiar with the female presentation of Autism who wouldn’t turn her away for not matching the typical male profile. Because of Yuz’s hard work and advocacy she did manage to find such a professional. Her daughter was diagnosed in September of 2017, a month shy of her ninth birthday.

When my daughter was diagnosed, I was relieved to know there were answers to her struggles and glad to know that support was out there for her and us as a family

In June 2018, Yuz began to notice that her son was showing signs and behaviours similar to his sister, similar to a female profile of ASC. He was diagnosed in December 2018 aged 7½ after months of careful observation by a team of specialised practitioners. He, like his sister had, could have easily slipped through the cracks and ended up with a false diagnosis or no diagnosis at all.

These diagnoses have helped Yuz and her husband Seon, to provide the right support for their children and has given them access to funding in order to support them further, allowing them to flourish. Beyond this, her children have been gifted an (accurate) insight and explanation as to why they have have struggled with certain things and found things more challenging than their peers. Since knowing that they have ASC, her children are proud of their neurodiversity and has meant that they can now advocate for themselves by, for example, declining a party invitation if they know it is going to be too overwhelming or loud for them.

 

If you would like to read more about Yuz’s on going story about her children’s diagnoses or her own journey with mental health and being diagnosed with ADHD last year, go visit her Facebook!

This is just one of many stories of young girls and boys who have benefited from an ASC diagnosis. To read about what we can offer to your child with ASC please visit our website or get in touch with us on 0161 820 9229.