Alice Running writes about the impact of not finding out she had autism until later in life and how now knowing has helped her to understand her past

Not all vulnerable girls are autistic, and not all autistic girls are vulnerable. It has been my lack of self-awareness and inability to predict other people’s intentions that has left me vulnerable, to an extent that I am only beginning to comprehend. All of my intimate relationships have been abusive, but I did not know at the time, not until the ‘serious stuff’ happened: the throttling, the broken nose, the stalking and the death threats. For the few women who receive an accurate and timely diagnosis of autism – men are three times more likely to receive an autism diagnosis than women – access to useful support is more likely, and this is likely to impact positively on their development.

Our life is great when we are allowed to live it as we choose – unfortunately, having autistic children means that I have to manage a constant flow of professionals who assess us against the neurotypical benchmark of ‘normality’

I am a 43-year-old woman with two autistic sons. Our life is great when we are allowed to live it as we choose – unfortunately, having autistic children means that I have to manage a constant flow of professionals who assess us against the neurotypical benchmark of ‘normality’. Some professionals understand my children and their needs well, but I have yet to find a professional who truly appreciates how an autistic woman navigates life, and motherhood in particular.

Our lives are dominated by education and health meetings, which I find both emotionally and physically tiring because I have to work twice as hard as the non-autistic attendees to process large amounts of complex information. It was due to my struggling to cope with these meetings that I began, around the age of 40, to consider that I might also be autistic. Researching autism for the benefit of my children led me to recognise that I had autistic traits myself, and enabled me to look back on my life in a more analytical way. All of a sudden there was an explanation for why I had found certain aspects of life incredibly difficult. I received an official diagnosis in 2018, when I was 42. But access to autism assessment is notoriously difficult, and I was fortunate enough to have the means to pay for mine, while many others do not, which means there is an inequality of diagnosis, so much so that some factions of the autism community advocate strongly for the validation of self-diagnosis.

I believe that I was noticeably autistic as a small child, but I grew up in a time when autism was not as well understood as it is now. I was always alone in the playground, lost in an imaginary world of fairies, I was sensorially intolerant to certain types of food and clothing, hardly slept, and communicated any distress I experienced through screaming, shouting or hiding.  On my first day of infants’ school, I kicked my teacher’s legs until they were black and blue. I can’t remember anything from the event itself, but I remember my mother frantically attempting to draw an apology out of me. I refused, feeling that I shouldn’t have to apologise. From my perspective, I had been perfectly content at home and was being forced into an environment in which I couldn’t cope.

At the age of seven, in the process of moving to the junior school building across the road, I contracted shingles, which my mother remains adamant was stress-induced. Moving to a larger building with more children, unfamiliar adults and new routines represented too many changes all at once. Autistic people often find change that they are not in control of very distressing, and I really struggled in this aspect.  At junior school, I adored one teacher but annoyed many others by frequently correcting them on the content of their lessons. On one occasion, one of these teachers took me aside to tell me that it was inappropriate of me to have corrected her interpretation of the rules of netball. I was correct and even had a book to prove it, but I didn’t understand the unwritten rule that children must always defer to adults, even if they’re wrong.

In the years that followed, I managed to blend in relatively well; I was academic and had a small group of close female friends. But I was often referred to as the “spoff” and, as such, was taken advantage of by a few underhand peers who offered superficial niceties in return for homework help. Happy to be spoken to, I was oblivious to their actual intent, but even if I had been aware, I don’t think I would have had the communication skills to successfully say no.

I did not have the ability to view myself and my behaviour from the perspective of others. People with autism often struggle to understand and predict other people’s behaviour

My best friend through the teenage horror years did a fantastic job of interpreting the whirlpool of rumours that followed me around, such as that I was a member of a cult. She also explained to me that my unique hairstyle had led peers to question my motives. Outwardly, it may have appeared that I didn’t care about what others were saying, but truthfully, I just did not understand. I did not have the ability to view myself and my behaviour from the perspective of others. This trait, one of three that are sometimes known as the “triad of impairments”, is referred to as “impaired social imagination”, which means that people with autism might struggle to understand and predict other people’s behaviour. (It doesn’t, however, mean that people with autism don’t have a rich imagination in other ways, as they often do.)

I coped by darkening my eye-liner and ramping up the punk/indie/goth mask that still serves as a great intentional barrier to the neurotypical world. Suffice to say, at my A-Level leavers’ prom I was voted both “worst dressed” and “worst haircut”, possibly one of my proudest moments. I was proud to be my authentic self, irrespective of whether this won the approval of my school peers.

Being oblivious to the external views of oneself has its own advantages: self-protection, for one. And creating an obvious difference, such as a punk facade, enabled me to be ‘different’ for a reason other than autism, or what I perceived as ‘unlikability’. Having a strong visual identity allowed me to acquire a sense of belonging with others when outside the school environment. Similarly, music gave me ready-made conversation topics and ways to connect socially without feeling at a disadvantage. This gave me a small amount of self-esteem, enabling me to develop some resilience in the face of bullying. I wasn’t bullied explicitly for being autistic – after all, I had no idea that I was – but for being ‘weird’. One anonymous peer wrote, “I just wanted you to know that I really, really hate you” in my leavers’ journal. Ambitious About Autism (a UK-wide autism charity) predicts that between 40 and 63% of autistic children will have been bullied during their time at school, which makes my experiences far from unique.

Communication anxiety and selective mutism are common traits in autistic people, and helpful adjustments can easily be offered if teachers are aware of the challenges autistic individuals may face when navigating a world designed for neurotypical ones

As an academic, well-behaved pupil, I did not bring myself to the attention of the teaching staff and so they left me to myself – noting only in my end-of-year reports that I was a little quiet and should perhaps make more effort to raise my hand to answer questions. This would have been nearly impossible for me to do as I froze in front of groups of people and my stomach would be in knots if I was required to participate verbally in any way. Even the buildup to answering the attendance register triggered acute anxiety. Communication anxiety and selective mutism are common traits in autistic people, and helpful adjustments can easily be offered if teachers are aware of the challenges autistic individuals may face when navigating a world designed for neurotypical ones. However, there was little to no awareness of autism in the 1980s mainstream school system, and so I just made do; I knew no different. Similarly, I didn’t recognise the meanness directed towards me as bullying and just accepted it as a part of life, in much in the same way that I came to accept the abuse directed towards me by my intimate partners later in life as ‘normal’.

Being vulnerable without understanding why was truly terrible preparation for adulthood as a woman, opening the doorway to unhealthy and disempowered intimate relationships. Moreover, having little awareness as to how others viewed me and of others’ intentions towards me and a desire to please was a toxic combination. I was a doormat for the entirety of my first and most significant relationship at the age of 18. Autistic people can be very rigid thinkers, and for me this meant adhering strictly to societal norms without necessarily evaluating whether they were fair. As a woman, I had been conditioned to agree, say yes, fit in and please, and even though I was passionate about justice for other women, I could not apply that analysis to my own life because I did not have the social imagination to do so. I understood others only at face value, so when I was repeatedly told that I was wrong by my boyfriend, I believed him. I believed everything I was told by him as it wouldn’t have occurred to me that a friend or boyfriend would be disingenuous. This made me very easy to manipulate and mislead.

To this day, I believe my actions are reflected back to me via the way someone looks at me, and my constant over-analysis of this is overwhelming

When my boyfriend made me feel bad about myself – when he told me that I had no friends and that “nobody else would want me” – it hit the core of my greatest fear: that I would be exposed as the social fraud that I feel I am: a mimic, riddled with social anxiety. I prepared for every social occasion in my mind. Indeed, in childhood, girls with autism are more likely than boys to mimic others in social situations out of a desire to blend in with their peers, as girls are socialised to place a higher importance on friendships than boys. Conversation has never flowed freely for me but in my late teens and early twenties alcohol helped to lubricate intolerable interaction. Unfortunately, this just made me lose my inhibitions and, to an extent, to drop the mask. I was bolder and louder and quirkier, and in the days that followed parties and nights out, I would hide away at home, convinced that I was hated and an embarrassment. During the event, I paid no notice to others’ expressions, body language or general mood, but the next day I was always crippled with doubt, replaying every nuance of gesture, word or glance over and over again, assuming by default that I had not been acting appropriately.

To this day, I believe my actions are reflected back to me via the way someone looks at me, and my constant over-analysis of this is overwhelming. I don’t understand what I’ve done to provoke such a response. Expressions of shock or disgust (as I experience them) loop in my mind for weeks, months and years, destroying my self-esteem and positivity swiftly whenever recalled.

During large parts of my life, I have had genuinely kind and lovely friends who have liked me for my directness and genuineness, and who have shielded me from more unscrupulous people. Without realising it, some of these past friends were essentially supporting me in interpreting the social world on my behalf and providing emotional assistance when out and about. However, as those friendships naturally dissipated (due to factors such as jobs, marriage or children), the gap was filled by less genuine people who found enjoyment in taking advantage of how I am. It is only with hindsight that I have this clarity of perspective, and I have no idea as to how much more prepared for the big, wide world I would have been had I had the privilege of an early autism diagnosis. But without sincere and supportive friendships acting in the capacity of mentor, I mistook any social contact or invitation extended to me as a positive and warm inclusion. I was completely unable to critically analyse motive and intention or whether there was even an equal rapport.

Oblivious to malicious intent, my openness and honesty became fuel for gossip among parents in the school playground network. In my 30s, I was once again acquiring dirty looks because my attire or emotional responses were never quite ‘right’. I became alienated from groups of women and therefore accepted any scrap of friendship without thinking twice. I mistook invitations as genuine, when I was really just brought in as a new woman for bullies to prey upon. I was teased for my vegetarianism and my way of speaking, and I eventually became extremely isolated. However, I am proud to have retained my genuine self – the person with no hidden agenda, who never has a nasty comment about anyone else to release as gossip. These are endearing qualities and I am glad that life has not taken them away from me.

For more information on this topic, Figs is a UK-based charity that advocates to end inequality for women and girls on the autism spectrum.

Photo courtesy of Creative Commons CC0, used with permission.

This shows a woman sitting alone on the bank of a river.