Serena Cribb
Why girls and women on the autism spectrum are missing out on diagnosis
Autism has historically been conceptualised as primarily affecting boys and men and continues to be most frequently diagnosed in male than female individuals. Some researchers suggest that this may not be due to a true difference in prevalence, but rather due to underdiagnosis of autistic girls and women. For those autistic girls and women who are diagnosed, on average they receive their diagnoses later in life than their male peers which has implications for their quality of life.
Timely diagnosis is important because it facilitates access to therapy and support services, as well as educational and/or workplace accommodations, all of which may improve the person’s functioning, coping skills, and mental health. Additionally, diagnosis may help autistic people to better understand themselves. An autism diagnosis might explain why they feel different to other people around them and/or why they have struggled in certain areas of life. In my experience as a clinician, it can be beneficial for self-esteem and mental health to reframe these struggles as not reflecting a lack of effort, but instead resulting from a brain which is wired differently. In keeping with this, autistic adolescents who are diagnosed earlier in life experience lower levels of depression and self-harm behaviours than those diagnosed later in life, perhaps due to better understanding of self. So why are girls and women being diagnosed late, or not diagnosed at all?
Stereotypes of autism favour boys and men
One possible reason for missed or late autism diagnosis of females is that the way we have historically conceptualised autism may be biased towards its typical male presentation. For example, autistic people are often stereotyped as not desiring friendships or social contact, preferring to keep to themselves. While male autistics are more likely to meet this expectation, many females with autism desire and enjoy social contact and friendships. Some autistic girls and women may have just as many friendships as their neurotypical peers. However, their social communication difficulties can impede their ability to maintain these friendships over time, and they may struggle with conflict resolution within them.
Additionally, while both male and females on the autism spectrum often have a very strong interest in a specific topic (often referred to as a special interest), the special interests of females with autism may tend to be deemed more socially acceptable and therefore draw less concern from family and teachers. For example, autistic boys may more often have strong interests in trains, maps or pipelines, while autistic girls may more often have strong interests in animals, celebrities or music.
Furthermore, despite stereotypes that suggest autistic people lack imagination and creativity, many autistic females are highly imaginative. As children, they often have elaborate make-believe worlds. Many are drawn to creative hobbies and careers, such as visual art, music or creative writing.
Girls and women hide their symptoms
Another factor which may contribute to underdiagnosis is that evidence suggests girls and women have a greater propensity for camouflaging or “masking” their autistic traits than their male peers. Of those who are diagnosed with autism, there are fewer female than male patients of above average intelligence. Some authors have interpreted this to mean that autistic females are more likely to have an intellectual disability, however, an alternative explanation is that girls and women without intellectual disability may be more skilled at camouflaging and therefore be going undiagnosed.
While camouflaging behaviours can be helpful in that they may allow the individual to better fit in socially, they also have a cost. Though it may look the same as neurotypical behaviour on the outside, camouflaging is hard work. A helpful analogy is that when a neurotypical person is navigating social situations, processes such as reading social cues and knowing how to respond to them are fast and automatic like a computer program, while for an autistic person who is masking, the process is slow and effortful, as if they are manually completing the same computer tasks. Considering this, it’s no wonder fatigue is a very common issue for autistic people.
When undertaking diagnostic assessments, clinicians often seek information from multiple informants (e.g. asking for a school report to see if it corroborates the parent report). However, it is typical for autistic girls and women to behave differently in different settings. They may camouflage more intensely and/or more often in public settings such as school, where they feel greater pressure to fit in and appear “normal”. In the home environment, they may be more at ease and “take off the mask”. In my clinical experience, parents of autistic girls are sometimes very confused when they receive a report from the school which does not seem to describe their child as they know them, depicting them as showing far fewer autistic traits or as being “better behaved” than they are at home. It is also a common pattern for autistic females to have meltdowns on returning home after a day at school or work due to being burned out from camouflaging their autistic behaviours.
Girls and women are misdiagnosed
There are cases where an undiagnosed autistic person’s social communication difficulties are mistaken for symptoms of a psychiatric illness, such as depression, anxiety, social anxiety/phobia, schizophrenia or personality disorders (particularly borderline personality disorder or schizoid personality disorder), leading to misdiagnosis. This happens because there is some overlap in how these diagnoses appear on a surface level, though the underlying reasons for these differs in each case. For example, lack of facial expression or vocal prosody is a feature of autism and may also be seen in depression. However, in autism, this is a result of social communication difficulties, while in depression, it may reflect low mood or fatigue. The picture is of course more complicated when both are present simultaneously; anxiety and mood disorders are common difficulties in autism. However, correct diagnosis is critical to maximising functioning and quality of life, as each of these conditions call for different approaches to clinical management.