Why do women struggle to be diagnosed with autism?
Increasing numbers of women are discovering that they have autism. However, there are still many stereotypes which shape society’s view of autistic spectrum disorder (ASD), and this can have an impact on how accessible diagnosis and support for ASD is for women. Many of these stereotypes are based on outdated research, much of which was based on young males and largely (or totally) excluded women and girls from the research sample. We will look at this more below. It is also recognised that standard diagnostic tests are less sensitive (that is, less likely to correctly identify a diagnosis of autism) in women compared with men. Autism is less likely to be considered in women and girls in the first place, due to ‘masking’ of typical features of autism, such as language and social communication difficulties. The features of ASD seen most commonly in women are often attributed to another mental health condition, or missed entirely. All these factors may also lead to women not pursuing a diagnosis, either because they do not feel they fit the profile of “classic” traits of autism, or because of a lack of confidence in diagnostic processes. Research and clinical practice are catching up, but many women still feel there are barriers to diagnosis and support.
Does autism actually present differently in women?
Typical traits of autism include:
- Social communication difficulties
- Difficulties with social interaction
- Restricted activities and interests
- Repetitive behaviours
- Sensory sensitivity
A diagnosis of autism is considered when these difficulties are persistent, have been present since early childhood, and cause significant problems with everyday functioning.
Girls and women are more likely to ‘mask’ any social communication difficulties; this is possible due to language skills typically developing earlier in females, and due to social normalising of certain traits in women. For example, avoidance of eye contact and socialising may be interpreted as shyness in girls, which is generally considered to be culturally acceptable and may therefore not be investigated. Similarly, the restricted interests which commonly present in women with autism tend to be more in line with peers compared to those in males. This may include intense interest in specific animals, films, and literature which is seen as not being unusual. The difference in autism is the quality of the interest, i.e. how intense it is and the extent to which it dominates all other activities. Repetitive behaviours tend to also be less outside the cultural ‘norm’ in females, for example hair twirling and spinning which may not be considered unusual in girls.
The research
Research into autistic spectrum disorder has generally focussed on sample groups which include a significantly increased proportion of males to females. Early studies, such as the work conducted by Hans Asperger, only looked at traits in boys. Some estimates suggest that current research literature includes 3-6 males for every female.
Because historically the research into ASD has largely focussed on male samples, healthcare professionals tend to be less knowledgeable about traits of ASD seen more commonly in women. This research is also what informed the development of the standard diagnostic tools, which are therefore largely aimed at identifying traits of ASD more common in males. A study by Rea et al in 2022 compared autistic males and females on items on the gold-standard diagnostic measure, the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2). They found that females were less likely to show atypical traits on the items related to social-communication behaviours and this affected total and subscale scores.
What is “masking”?
“Masking” is when people with autism use different strategies (sometimes called camouflaging strategies) to compensate for their traits, particularly difficulties with social communication. This is more common in women than men. For example, this may involve laughing along with a joke or smiling and nodding whilst someone else is speaking. These social behaviours can be learned by people with autism and are typically developed by mimicking other people. Shadowing other people’s body language can be received positively in a social setting, and this can therefore help girls and women ‘fit in’ socially. However, constantly using masking strategies can be exhausting and lead to increased anxiety. It can also make traits of autism less obviously apparent. Girls and women may feel both internal and external pressure to be socially included. This can lead to appearing to be part of a social group when in fact there is little social initiation and participation is very much led by other parties. This can have the effect of feeling more isolated as a result of being “on the fringes” of the social group. Autism can also effect someone’s understanding of social hierarchy and manipulation, which can lead to bullying and exploitative behaviours in peers.
Co-morbidity and autism
The term co-morbidity refers to psychiatric, physical, and neurodevelopmental conditions which exist alongside autism. This can include:
- ADHD
- Mood disorders
- Anxiety
- Depression
- Obsessive compulsive disorder (OCD)
- Eating disorders
- Epilepsy
A large study in 2021 found that co-morbidity rates for females exceed what would be expected based on the sex ratios among non-autistic individuals, indicating that the association between autism and comorbidity is stronger in females.
There is also significant diagnostic overlap between ASD and other psychiatric conditions and it is not uncommon for autism to therefore be misdiagnosed. This may occur more frequently in women, due to the perceived atypical presentation of autism. Symptoms such as mood instability, irritability and depression which could be secondary to autism are more likely to be attributed to bipolar affective disorder or emotionally unstable personality disorder in women. As explained above, these conditions can co-exist, but it is important to ensure that autism is not ‘overshadowed’ by other disorders more commonly diagnosed in women, and therefore missed.
There is evidence to suggest that people with autism are significantly more likely to report symptoms of post-traumatic stress disorder than a neurotypical population. This may be because people with autism are more likely to experience traumatic events (such as bullying or abusive experiences in childhood). It may also be because people with autism experience trauma differently to neurotypical people, and events such as school transition, moving house or being prevented from engaging in restricted interests may be experienced as intensely traumatic. Some studies also suggest factors which may naturally predispose someone with autism to PTSD, such as ruminations, emotional dysregulation, difficulty making sense of intense emotions and detailed focussed processing of traumatic memories. It is important to note that people with autism who undertake psychological treatment due to a history of trauma may need certain adaptations to the therapy and this will be important to discuss with the psychologist/psychotherapist.
Why seek a diagnosis?
Many people with traits of ASD have found their own ways to navigate the social and language barriers they have encountered through life, and therefore may not feel a need to seek a diagnosis. However, if there is evidence that the traits are causing difficulties in day-to-day life, for example in relationships, friendships, work or education, then a diagnosis may help to understand yourself and the world better. It may also provide an opportunity to seek support if and when needed, and make it easier to explain your way of seeing the world to people who don’t have ASD. If you do decide to pursue a diagnosis, consider working with a clinician who has experience of diagnosing ASD in women.
Visibility and understanding for all groups with autism is improving. In November 2022, the National Autistic Society launched “Now I Know”, a campaign which highlights the experiences of late diagnosed autistic women and non-binary people.