Autism in women and girls

Around three times more men and boys are diagnosed with autism in the UK than women and girls. This is according to the National Autistic Society.

However, this may not mean that more males are autistic than females. It could be that women are better at hiding their symptoms and copying social norms, particularly those at the high-functioning end of the spectrum. Another explanation is that autism assessment tools tend to be male-centric. That is, based on male characteristics, therefore more males end up fitting the diagnosis than females.

Carol Povey is director of the National Autistic Society’s Centre for Autism. She says: “Research suggests that the number of males and females on the autism spectrum is far more equal than previously thought and diagnostic statistics suggest. We’ve seen a steady increase in referrals of women and girls to specialist diagnostic centres such as the National Autistic Society’s Lorna Wing Centre for Autism.”

Why are more men and boys diagnosed with autism than women and girls?

A difficulty in finding the true number of people with autism is that the condition is tested by a behavioural assessment. With something like Down’s Syndrome, we know it is caused by an extra copy of chromosome 21. Doctors can test for it with exact accuracy. With autism, meanwhile, many people can go through their lives without knowing they have it at all. Behaviours may be misdiagnosed as a mental health rather than a neurological condition. They may be explained away as shyness or quirks, or even go largely unnoticed.

Studies have shown that autistic women are far more likely than autistic men to be undiagnosed for a long time. Reasons for this include misdiagnosis. Women are more likely than men to research their symptoms and align them with a mental health problem such as anxiety or OCD. Particularly in adolescence, women are more likely to purposefully behave like other women/girls their age in order to fit in.

Research into the ‘female autism phenotype’ suggests that women with autism often portray different behaviours to men. This is because they tend to internalise their emotions, rather than expressing them outwardly, through aggression for example. Then there is the ‘female protective theory’, that alleges that girls must inherit more of the genetics that cause autistic behaviours than men in order to display these behaviours.

What behaviour do autistic women and girls display?

Whether women and girls with autism display different behaviour to men and boys as a result of the condition is not entirely clear.

Some signs, such as social anxiety and fixations on particular interests, can be difficult to distinguish as an autistic trait, particularly in teenagers. Females do tend to be better at ‘masking’ their autism, but every person is different so symptoms can vary widely.

Signs of autism in women and girls can include:

Difficulty with forming friendships

People who have autism may:

• Have one or two friendships that they care deeply about, rather than a group or scattering of friends. They may find it difficult if their friend spends time with somebody else.
• Find it difficult to get close to people and form true friendships. They may find it hard to be open and honest due to masking.
• Spend a lot of time alone, even during lunch breaks at school or work.
• Particular difficulty forming relationships with other females or showing interest in typically ‘female interests’.
• Apologising unduly or, conversely, not understanding why somebody is upset by something they’ve said.

Difficulty understanding social norms

• Misunderstanding what people value/expect.
• Showing learned behaviour when speaking to people, such as asking lots of generic questions.
• They may fall out with people often or be bullied at school because people misunderstand their behaviours and intentions.
• Mimicking others in general as a means of exploring how they ‘should’ speak and behave.
• They may seem in some ways much more mature than their age and in others much less mature.
• Show black-and-white thinking when it comes to social interaction.

Intense interests

• Being deeply interested in certain topics, this is normal but in people with autism this can be more intense. They may also talk at length to others about their topics of interest, whether or not that person has an interest in the subject.
• Strong enjoyment of and ability in academia. They may really enjoy studying and find it easy to remember information in great detail.

Anxiety

• They may be very socially anxious. This can result in their being excessively shy or awkward in social situations well into adulthood.
• Autism can make it more likely for a person to experience anxiety-related disorders such as OCD or eating disorders.
• Finding comfort in rules.
• Finding comfort in following a regular schedule. Lots of people thrive on routine but people with autism can find it distressing if they are not able to follow their routine.
• Always eating the same brands of the same food and finding it uncomfortable if their usual products aren’t available.
• May have a greater than average fear of getting things wrong or ‘getting told off’.

Different ways of communicating

• Speaking at length and in great detail about a topic of interest.
• Women and girls may be more likely to show learned behaviour in conversation, such as asking lots of generic questions or saying learned comforting phrases if the other person is emotional.
• Taking others’ meaning literally and therefore finding it difficult to understand turns of phrase, idioms, jokes or sarcasm.
• Referring to themselves in the third person, or saying, “This has been done” instead of, “I did this”.

Sensory overload

• Hypersensitivity to light, sound or certain smells and textures. This can be very uncomfortable or overwhelming.
• Finding certain sensations intolerable that could be considered ordinary and everyday, such as standing under a shower head.
• Finding it very difficult to concentrate, have a conversation or think straight due to background noise that others are able to tune out.
• Experiencing ‘information overload’ from busy surroundings. People who live with autism can notice much more about their environment than other people.

Ilana Estelle, an author who was diagnosed with Asperger’s in adulthood, believes autism “has nothing to do with gender”. 

She says: “With autism, you’re locked away in a world many people without the condition find difficult to understand. While different genders may cope with different issues because they are stereotyped, I don’t believe it matters whether you’re a man, woman or child. Without help when you’re a child, it can be more difficult to adapt as an adult. Although any disability is difficult, what’s more difficult is people’s attitude to what and how we deal with things. There needs to be more understanding for us.”

Research is still very much ongoing

We don’t have clear answers as to how, if at all, autism affects men and women differently. Ms Povey, director of the National Autistic Society’s Centre for Autism, explains: “Professionals often don’t understand the different ways autism can manifest in women and girls, with many going through their lives without a diagnosis and an understanding of why they feel ‘different’. Past research has largely concentrated on males, which means the way we understand autism tends to be very much based on the experiences of men and boys with the condition.

“It’s important to point out that every person on the autism spectrum is different. But, as a rule, girls are often better at developing ways to mask what we traditionally think of as the signs of autism, which can make it harder to diagnose. This ‘masking’ can lead to a great deal of stress, and many women and girls go on to develop secondary problems such as anxiety, eating disorders or depression.  

“Gender should never be a barrier to a diagnosis and getting the right support. To make this a reality we need to do more research around the ways that autism can manifest in different groups of people, so that everyone can have a fair and timely diagnosis. For more information on autism and gender visit autism.org.uk”