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Over the last couple of decades, awareness regarding autism and its early detection has increased. Autism Spectrum Disorder (ASD) is mostly stereotyped as a condition that can easily be diagnosed in young children. In fact, most people believe it can be diagnosed at a very young age. But what about those who fall through the cracks of the system, whose signs and symptoms are ignored or misunderstood, particularly females in most cultures? This kind of everyday experience leaves most individuals in this group without a clear diagnosis until very late in life and without any explanations for the effect of their bizarre behaviour that they have endured for a number of years.
The article examines some of the reasons and effects of autism diagnosis being ‘delayed’ in females initially, along with the research implications that emerge as secondary effects. We will then examine the understanding of autism by healthcare providers in terms of female patients and the need to address this gender imbalance.
Throughout the years, it has been observed that most children diagnosed with autism syndrome are boys compared to girls. For instance, data shows that the National Autistic Society of the UK depicts the diagnosis of boys to girls in a ratio of 4:1. However, increasing data points show that this difference may not occur because more boys than girls suffer from autism but because girls are often misdiagnosed or even diagnosed late. The incidence of autism has been interestingly noted to be higher in females around the age of 80, with most being diagnosed much later, after 18 years.
For many women, an adult diagnosis of autism can help completely turn the tide. It provides answers that have long been withheld regarding their behaviours and possible challenges that may have baffled them for ages. It also provides the means to obtain the essential help and resources that can significantly improve their lives.
The difference between some medical conditions and autism spectrum disorders is that the latter does not have any medical tests to confirm the diagnosis. This means that an individual’s developmental history, including behaviours and symptoms, must be assessed to make a diagnosis. This can be more difficult in the case of women since their symptoms are often more subtle than those of men. There are no diagnostic assessments available that have the same level of efficacy for women, which is why many women’s autism goes undiagnosed.
Early autism studies were mostly conducted on boys, leading to the development of diagnostic criteria based on male behavioural patterns. Hence, these criteria may fall short in describing how the condition presents in women. Autism in boys is often accompanied by external features such as difficulty in socialising and other stereotypes. Girls, on the other hand, may find it easier to hide their problems, making their autism harder to notice.
Boys and girls with autism exhibit behaviour that can be considered gender non-conforming at different levels. In their early years, a girl may exhibit ‘normal’ social behaviour such as making friends and appearing amicable with others. However, it is likely that such girls are merely pretending or acting rather than engaging in meaningful social interactions. This skill of presenting oneself appropriately to others can delay diagnosis, as their difficulties are not easy to see.
The ‘masking’ effect is one of the factors that make the diagnosis of women with autism very difficult. A large number of females on the spectrum learn to observe and mimic neurotypical behaviour patterns to camouflage socially, which serves its purpose. While this system may help avoid drawing attention, it also has its determinants. Masking is painful and very tiring; it can cause stress disorders, depression, and fatigue. For many women, they will only receive an autism diagnosis when this need to ‘mask’ becomes unrealistic or literally impossible in adulthood.
Women diagnosed with ASD upon reaching adulthood face varying disabilities. Autism symptoms in women include, but are not limited to:
As these women progress through their teenage years and commence adult life, such constraints significantly enhance feelings of bafflement, exasperation, and the quest for elucidation. For quite a number, it helps to make sense of themselves when they are labelled as having autism.
Autism in females is most likely to be accompanied by another disorder or a set of disorders contributing to mental health problems in the individual, particularly when the diagnosis has been inadequately treated for years. Contributing factors include the prevalence of anxiety, depression, eating disorders, and ADHD observed in many females, primarily due to the struggle of existing within a neurotypical society without understanding the reasons why. Recognition and treatment of these co-occurring conditions is equally important when considering targeted interventions for women with autism.
On one hand, women with late-diagnosed autism report that such experiences are often fulfilling. At least one feels relieved knowing that their behaviours and emotions, which have baffled their understanding for so long, have a basis. This also helps women in this situation because they now have access to support, techniques, and tools that greatly improve their quality of life.
While early diagnosis and intervention are widely recognised as factors that enhance the quality of life for autistic individuals, many women suffer from a lack of medical diagnosis, thus losing many years of available support. Bridging the prevalence gap in autism diagnoses between genders may enable these women to access appropriate care earlier in life and minimise the disorientation and frustration experienced.
By overcoming the traditional understanding of autism and evaluating autistic individuals by healthcare professionals, the gender disparity in autism diagnoses may be addressed. Each diagnostic criterion must be re-evaluated, and further, the manifestations of the condition among both male and female populations must be better appreciated. This also means raising awareness of societal perceptions of autistic women and encouraging professionals to take women’s concerns seriously.
Furthermore, there should be more studies that specifically examine the issues of autism and womanhood. Once we understand more, we will be able to create better diagnostic and treatment approaches that fit the needs of women.
The issue of autism in women has been ignored for a long time, but this is now starting to change. The increasing awareness of the disparity in autism diagnoses among women has led to more women being diagnosed and supported. If we can revise some of the diagnostic criteria and listen to women more effectively, we will ensure that the systems in place for the support of autistic women improve, giving them a chance to thrive.
The recognition of autism in women may seem quite nascent today. Still, with each diagnosis, we move closer to the realisation that every manifestation of autism spectrum disorder, irrespective of gender, requires adequate management, acknowledgment, and appreciation.
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