My own experience perhaps gives an insight into the repeatedly similar tales I hear from other autistic women and parents of girls. I came to the field of autism via employment in education and then as Training Manager of a specialist Asperger mentoring project for young people. By this point, there had already been personal family realization – it became obvious through my professional learning that my partner, Keith, is autistic and other members of my family were one by one being diagnosed as well. I embarked on an extensive self-instigated learning mission for both professional and person insight, eventually writing a number of books on autism and studying for a Master’s degree in Autism.
I made myself an expert in the people I worked and lived with but despite this, I failed to see it in myself. The reason I missed it was because my learning hadn’t taught me about autistic people who looked like me: autistic people who had big, chaotic lives rather than small, isolated ones. Autistic people who knew they didn’t fit but tried their hardest to do so, often at great cost. Autistic people who were impulsive, dangerous and who love (self-initiated) change. I knew that I was odd and that every relationship I’d had was with someone who probably fitted the autistic mold. I knew I was highly logical and struggled to interact in non-structured social situations. I knew I had “phases,” 35 failed jobs and self-harmed. I knew all of that, but it didn’t look like the autism that I had studied. Keith was the epitome of the autism I had studied and I knew that I understood him, and he me, but we were so different. Weren’t we? The autism that I had studied had only given me a partial picture, because that was all we knew about it at the time. In the past few years, things have changed and changed fast, and this has meant that we now know that autism can look a whole load of different ways – for females, males and others. It is important to note that what is often called the “female autistic profile” doesn’t just apply to women – it can apply to anyone – it’s just that it appears to partly explain why so many females got missed along the way. The other part of the explanation can be put down to a self-fulfilling historical bias towards males receiving autism diagnoses, but we don’t have time for that here. It should be stated that the females that have largely been missed are those without accompanying intellectual disabilities – the Asperger profile – and that’s predominantly who this article will focus on.
So, who are these females and what do they look like, if they don’t all fit the nerd/loner stereotype? Well, from the extremely small and sparse gender focused autism research that has taken place along with an increasingly vocal female autistic population, especially through social media and blogging, we are starting to see some patterns and shared experiences that at first glance appear to entirely contradict the traditional triad of autistic cognitive processes, but on closer examination, actually reveal them, in my opinion, to be reasonably accurate but simply presented in a different way.
The females often love to talk from a young age and may have precocious vocabularies, which makes them appear very social and hence no tick in the autism box. What can be apparent on closer listening is that the conversation is not reciprocal, or is fairly surface level with little depth of understanding or nuance and hidden agenda. It is considered that in early years autistic girls perform better than their male counterparts but that things change once teenage years are reached. It’s not that the girls regress, it’s that their female peers shift gear into a more nuanced, non-verbal personality-based friendship league which our autistic girls struggle to keep pace with, and often don’t want to. Autistic people are known to have topics of fascination and interest and this certainly equally applies to females. However, an expectation of the trains, dinosaurs and space type object-based interests of the stereotypical profile may not always quite fit for females. In my experience, autistic females often have an interest in people, but almost from an outsider perspective. They study people as an object, an alien species, in a bid for understanding and perhaps acceptance. I have met many women who have studied psychology, anthropology, religion, genetics and many other wide and varied loose ‘people’ topics to try and see where they fit in the world in its broadest sense. Fascinations with celebrities, serial killers and historical figures feature frequently along with the devouring of self-help books and endless efforts to improve, change and belong have led to the individual themselves being their own special interest. I have met nurses, psychologists, counsellors – all professions that would not be associated with an autistic profile, but all roles than require the ‘working out’ of human and social rules. When talking to these women it is clear to see that the social skills that they feel that they require to be accepted in the world are ones that they have had to learn from whatever instruction manual they could find.
Despite, her best efforts at learning mechanically what non-autistics know intuitively, she is likely to still to struggle with reading people and interpreting hidden messages and agendas. This leads her to be direct and straightforward in her manner and communication, offering less social smiling and social padding than is expected for females. This can lead her to being judged more harshly because of her gender. A blundering male can sometimes be forgiven for awkwardness or limited understanding of others: ‘it’s just how men are’ is a term of our times. But a woman behaving in the same manner can be considered ‘cold’, ‘nasty’, ‘a bitch’, and thus the female autistic faces the additional challenge of not only contravening typical social norms, but gender norms too. Added to this is the fact that for many autistic females, their efforts to mask, hide and mimic learned social responses means that their autism can be incredibly invisible, only leaking out in times of stress or when the script/template cannot keep up with the current situation. This means that any faux pas look deliberate, out of context with the usual persona – and often it is just that, a series of personas for different settings – and the resulting negative feedback from recipients is crushing.
The difficulties in reading people can also lead to a vulnerability and naivety in some females which can be dangerous. Wanting to belong can make a person grateful for any attention from others and unable to determine whether it is genuine and safe. I know from my own experience that despite having an IQ of 150+, I am unable to tell if someone is lying or has an alternative motive, which has lead me into situations of harm. Being clever doesn’t protect you if you are socially gullible, as I am.
It’s not all doom and gloom, of course. The greatest surprise in my journey has been the discovery of my ‘tribe’, which I didn’t even know I needed. Connecting with other autistic women has enabled me to feel a sense of belonging that I didn’t know existed. Sometimes these are strangers on social media, but it doesn’t matter: we ‘get’ each other. When we share a tale of woe, stupidity or joy, there is no frown or confusion, no roll of the eyes of judgement, only solidarity: empathy. Yes, empathy: empathy for our own kind, for shared experiences and a shared world view. It’s just everyone else that we don’t understand.
We can learn lessons from those undiagnosed until later life that can be passed on to our girls now finding their way with diagnosis, support and knowledge. We need to encourage their individuality, give the tools to navigate the world without losing who they are along the way, which so many have done in the past. Autistic girls and women are glorious, unique creatures, defying social and gender norms, and if supported well, should be able to embrace their eccentric selves as a first-rate autistic person rather than feeling like a second class version of neurotypical.