Autism in women and girls: why it's often missed

For a long time, autism was seen as something that mostly affects boys. Today we know that many autistic girls and women go unrecognised for years, and that many only get a diagnosis as adults. In this article, we look at why autism in women is often missed, how it can show up, and what you can do if you recognise yourself.

More women are autistic than once thought

Earlier, it was often said that four times as many boys as girls are autistic. A large review of studies from 2017 found that the real ratio is probably closer to three to one, and that girls who meet the criteria for autism are less likely to get a diagnosis than boys. Many researchers believe the difference is even smaller, because the girls who are missed don't show up in the figures.

Women are also diagnosed later on average. Many are first assessed for other things, and some only realise they may be autistic when their child is assessed, or after reading about other women's experiences.

Why autism in women is often missed

The descriptions were based on boys

Much of what we know about autism comes from research on boys. Descriptions, questionnaires and the expectations of professionals have therefore been shaped by how autism often shows up in boys. Girls who don't fit that picture are easier to overlook.

Masking and camouflaging

Many autistic girls learn early to watch and copy others to fit in. They may have a friend to follow, rehearse what to say, or force themselves to make eye contact. This is called masking. It can hide the difficulties, but it often costs a lot of energy. Read more in our article on autistic masking and the CAT-Q.

Interests that don't stand out

Autistic people often have intense interests. In girls, these are often things that seem ordinary, such as animals, books, music, particular TV series, psychology or people. What's different is not so much the topic as the intensity: how much time and energy goes into it and how important it is.

Quiet rather than disruptive

Many autistic girls are described as shy, quiet or “good”. Difficulties that show up as withdrawal, exhaustion or anxiety are noticed less than behaviour that disrupts others. Many hold it together at school and fall apart at home.

Signs that can point to autism in women

Autism shows up differently in everyone, but many autistic women recognise some of this:

• Feeling different from others for as long as you can remember, without knowing why.
• Friendships that feel hard to understand or keep up, or that work best one-to-one.
• Being exhausted after social situations, even ones you enjoy.
• Analysing conversations afterwards and worrying about having said something wrong.
• Strong reactions to sounds, light, smells, clothes or textures.
• A strong need for predictability, and finding sudden changes very stressful.
• Intense interests that you can spend hours on.
• Taking things literally, or finding it hard to know what people mean when they hint.
• Periods of burnout, anxiety or depression, especially at times with many demands.

None of these signs mean you are autistic on their own. What matters is the overall pattern, and whether the traits have been there since childhood.

Misdiagnosis and co-occurring conditions

Many autistic women have been assessed for or diagnosed with other things first, such as anxiety, depression, eating disorders, ADHD or personality disorders. Sometimes these diagnoses are correct and exist alongside autism. Sometimes they describe the consequences of years of masking and stress, rather than the cause. Recognising autism can make it easier to get the right help for the other difficulties too.

Screening questionnaires and women

Screening questionnaires such as the AQ-50 and the RAADS-R can be useful for women too, but they may underestimate traits in people who mask a lot. Some tips:

• Answer based on how things feel, not just how you behave on the outside.
• Think about what you were like as a child. The RAADS-R asks about both now and before you were 16.
• Take the CAT-Q as well, to see how much you camouflage. A high CAT-Q score together with a moderate score on the other tests can be a sign that your traits are hidden.

What can you do?

If you recognise yourself, you can start by reading about other autistic women's experiences and taking a few screening questionnaires. If you want an assessment, it helps to find a professional with experience of autism in adults and women. Read our guide on how to get an autism assessment as an adult.

Whether or not you get a diagnosis, understanding yourself better can make a big difference. Many women describe finally being able to make sense of their experiences, and to stop blaming themselves for things that have always been hard.

Want to start with a screening? Take the AQ-50 for free here.