Why Are Many Autistic Women Missed or Misdiagnosed?

Autism is not an illness, nor is it something that can ever be cured. It is often described as a lifelong developmental impairment and many people believe it should be considered a neurotype. For me, it is a disability, and while I love the way my brain works, society is not set up to accommodate people who experience the world as I do. It can be exhausting and debilitating to have a brain that constantly sees things from a radical and alternative viewpoint, especially when society adores sameness. My life becomes problematic when I am expected to behave like other people, particularly women who are not neurodivergent, because I cannot do it.

The current rates of diagnosis for autism suggest that there are a lot more males impacted by this condition than females and I believe this is a dangerous and inaccurate narrative that has evolved largely because of discrimination and prejudice towards females who are neurodivergent (Posserud et al, 2021). I believe that thinking of autism as a gendered condition is hugely problematic for females and is a significant reason why so many of us are missed by professionals and are often unsupported. I think that many women and girls are not diagnosed, misdiagnosed, or underdiagnosed because many of us present differently from autistic people who were born male (Beggiato et al, 2017, Milner et al, 2019). Males may be diagnosed more readily if their conduct is problematic and females may be overlooked and ignored because they often behave differently and are easier to contain and manage. Another widely given reason for females being missed is that they "mask," or camouflage, their autistic traits much better than their male counterparts (Milner et al, 2019, Corscadden et al, 2021).

These issues and misconceptions may be perpetuated if many professionals believe or are educated that autism is more male than female. In turn, clinicians may view the condition through that information and gender-biased lens (Muggleton et al, 2019). It is only critical inquiry and analysis which will challenge the prevailing patterns. I believe the issue is rooted in the conception and early research on this subject, which focused on males and thus established the gender-biased stereotypes around the condition that continue to prevail.

When I was assessed in November 2020, the psychologist told me they received the most criticism around diagnosing people like me. I understood that to mean that I don’t fit the old views around being autistic or having a disability. That professional said that, in their professional opinion, I was “clearly autistic.” I am so grateful for that psychologist and how they have helped me understand who I am and why I am this way.

I wish I had known earlier that I was autistic. I had been searching for answers and engaging with our health service for two decades before I went privately and received an autism diagnosis. I do not believe my experiences are unique and I believe this is one of the reasons why so many girls and women are not diagnosed or are being consistently and persistently misdiagnosed and thus receiving ineffective or even damaging treatment. We are not believed or viewed as autistic because of outdated and problematic views around what autism looks like and who it impacts.

In recent years, I have done extensive research in this area and I have felt relieved and delighted about what I have come to learn. My diagnosis and subsequent career change have been life-changing and life-affirming. I wish I had known, so that I could have found my people and my purpose earlier. I wholeheartedly believe that my purpose is working with neurodivergent people and helping to increase awareness around this issue, particularly in how it impacts and affects those who identify as female or who were assigned female at birth.

When I see celebrities such as Elon Musk talk about being autistic, I can see how some of the misconceptions and stereotypes around Autism Spectrum Disorder (ASD) may continue and strengthen. Musk supports the dominant narrative connected to what was previously known as Asperger's, of the technological or scientifically gifted, frustrated genius. Musk is undoubtedly a remarkable person who has achieved incredible things. The fact he outed himself as the first autistic person to present Saturday Night Live is encouraging, but his privilege and his enormous wealth and success have afforded him security and freedom that many on the spectrum do not have. It was my privilege and my ability to pay privately for an assessment that led to a diagnosis. This is problematic in that it means that many who have this condition are undiagnosed and misdiagnosed because of their socio-economic circumstances or their lack of ability to consider autism as something that relates to them.

After the birth of my second child and yet another horrific pregnancy experience, I broke down. I could not cope and I had to pay for childminders and actively seek help, as I could not function and struggled with the expectations of motherhood and maternity leave. I remember sitting in front of health visitors, my general practitioner, and eventually psychiatrists, and begging them to help me and tell me what was wrong with me. I told them I was exhausted and terrified and constantly wanted to run away. I was terrified because nearly everything they told me that would happen in my body and mind did not happen.

All those professionals were impressed by me, all of them liked me, told me how wonderful and intelligent I was, and then I was diagnosed with severe depression. It would be another ten years before I was to receive the diagnosis that would change everything. It was missed by many professionals, many times and I think my intellect and the way I presented as an educated and articulate person always went against me in my search for answers. I didn’t look autistic to these people, so they didn’t see it. Yet, now that I know more about autism and what it is, I struggle to understand how they missed it. I was different. Everyone knew it, everyone saw it, but there was something about the beliefs around autism that meant that it was not considered a possibility.

Another dangerous and misleading narrative that continues to prevail, and which I am hoping to help change and challenge, is around empathy. I was often commended for my parenting and my kindness, and I was also popular. These traits and attributes do not fit with the old ways that autism was considered. One of the most harmful, hurtful, and cruel misconceptions around people with ASD relates to empathy. I am incredibly empathic, to the point where it can be detrimental to me and my health. This is another one of the reasons why I think many females are missed, as they are often over-empathized or have hyper-empathy and the old narrative is that those with autism cannot be empathic or that we have no empathy at all.

If professionals want to address why male rates of diagnosis are much higher than female rates, then there must be questions asked about why this condition has been so misappropriated and misrepresented around gender lines. For years, I would not have considered myself as autistic, as I was not like the few people I knew who were diagnosed with autism. I was seen as a free spirit, quirky and eccentric, and I am those things. The problem was people thought it was a choice, so they expected me to be able to turn it on and turn it off when it suited, especially for work purposes. I tried and I passed on many occasions, because I masked, but eventually the toll was too much and I got very sick.

I think autism impacts all genders, but much historical research and data on this condition have prioritized the male experience. We only need to reflect on the controversial extreme male brain theory produced by Simon Baron-Cohen (2002) to see how detrimental this data was to females being assessed and diagnosed. Many health professionals were and still are reluctant to diagnose or see females as autistic and we must critically draw attention to how this condition is perceived, socially, culturally, and intellectually.

Medicine, medical practices, and diagnostic processes continue to use male experiences as markers and often systemically discriminate against women by expecting them to behave and present like men before being assessed and potentially diagnosed. If we want to understand why the rates of diagnosis are higher amongst men, first we must consider why society finds it easier to see men as being impacted by autism more than women (Milner et al, 2019). These statistics will not dramatically change until beliefs, ideas, and attitudes around autism do.