The Fight for Female Autism
5th April 2019
It is estimated that males on the autistic spectrum outnumber females on the autistic spectrum 4 to 1. Historically, autism was viewed as a ‘male condition’, with some even describing autism as ‘extreme maleness’. Many of the traits traditionally associated with Autism Spectrum Conditions are thought of as classically ‘male’, such as being detail-orientated and having difficulties with making social connections and judgements. This has created a lack of awareness of female autism, meaning that many women on the autistic spectrum fly under the radar; their autism is frequently missed, they are diagnosed later in life than men are, and they are more likely to be assessed and treated for other mental health conditions such as personality disorder, extreme anxiety or eating disorders before being diagnosed with autism. Here we explore some of the reasons for these gender differences in autism diagnoses, and the resulting issues for women on the autistic spectrum.
When Leo Kanner and Hans Aspergers, the founding fathers of autism research, first studied autism, their research participants were predominantly male. Understandably, diagnostic criteria was thus based mostly on the presentation of autism in males and did not accurately reflect the spectrum of differences often seen in female autism, and as we now recognise, males too. For example, repetitive and restricted behaviours are a well-known and well recognised feature of autism, however they are characteristically thought of as ‘mechanical’ interests and behaviours, often described as lining up and ordering of toys and preferred objects such as trains and cars. As such (and we’re trying not to gender stereotype here), autistic females and some males will say that creative and artistic interests were discounted as autistic behaviours, despite them showing often consuming interests, limited ‘cognitive flexibility’ and a need for repetition to ensure consistency and routine in order to reduce the anxieties of daily life.
Further studies have also found that females on the autistic spectrum generally appear to have more subtle social difficulties than males, in that they are better able, and more motivated, to mask their social challenges. Many females with autism talk of stepping into the personalities of those around them and taking on the identities of others. They describe putting high levels of conscious effort into their social interactions; being aware of the social pressures of saying the wrong thing at the wrong time but not knowing why, forcing themselves to make eye contact which feels physically painful, and constantly playing catch up in conversation as they try to read and process non-verbal conversational cues. Whilst doing all of this, they’re attempting to reduce their engagement in much needed sensory seeking behaviours, such as rocking, tapping, pacing and twirling, in an attempt to fit in with the neurotypical world. Keeping up appearances understandably takes its toll and as such, extreme anxiety and sensory overload can lead to ‘meltdowns’ at the end of the day; an intense response to overwhelming situations that occur when someone becomes completely overwhelmed by their situation and loses control. These may be expressed verbally or physically and can very distressing for the individual and those around them. In the book “Spectrum Women” edited by Barb Cook and Dr Michelle Garnett, one writer speaks of feeling like she was ‘playing different roles and acting them out’ during school, but this being so tiring that she sometimes had to skip school to sleep. This kind of account is not uncommon, and really highlights how difficult trying to ‘fit in’ as a girl or woman on the spectrum can be.
These factors may in part explain why there are far fewer females diagnosed with high functioning autism; because current diagnostic criteria has not encompassed descriptions of their difficulties and they are good at disguising their needs, whilst being able to function well academically in school. Therefore they are missed by clinicians, parents and teachers. This lack of diagnosis, or late diagnosis, means that some females report being denied a diagnosis because they have developed coping strategies despite their difficulties. As such they are unable to access the help and services they need at an early enough age. This, combined with the pressures of masking behaviours, may have a drastic impact on their mental health and wellbeing, with a number of studies finding that autistic females have higher rates of depression and anxiety than males on the autistic spectrum.
However, it is not all doom and gloom for the topic of women on the autistic spectrum. Recently there has been a massive push to better understand female autism and also these characteristics in males, with far more research being conducted to include females on the autistic spectrum. For many years, Temple Grandin was the most widely known and amazing advocate for autistic people and females. Since then, more and more autistic women have spoken about their experiences and they provide beautifully written, descriptive and hugely emotional first-hand accounts of what it means to them to be autistic women. “Pretending to be Normal” by Liane Holliday Willey and “Spectrum Women” edited by Barb Cook and Dr Michelle Garnett are great reads. See our “Good books and Good Looks” blog which includes further reads and some amazing YouTube videos from autistic females.
I am hopeful that in the future diagnostic criteria, research and treatment will better encompass females on the autistic spectrum, leading to better understanding and less missed diagnoses. As clinicians, it is our responsibility to continue to push for more understanding of autism in women, and ensure that in our work we challenge the male-bias every day.
References:
https://www.spectrumnews.org/opinion/viewpoint/call-help-need-address-suicide-risk-autistic-women/
https://thepsychologist.bps.org.uk/autism-women
https://www.autismspeaks.org/blog/things-i-hear-woman-autism-you-dont-seem-autistic-me
https://iancommunity.org/cs/understanding_research/extreme_male_brain
https://www.autism.org.uk/about/behaviour/meltdowns.aspx
https://www.autism.org.uk/professionals/training-consultancy/online/women-and-girls.aspx