…in order to understand how brains get to be different, we need to pay attention to what is going (on) in the world outside those brains. We now know that our brains can change throughout our lives as a result of the different experiences we have, the different attitudes we encounter, the different lives we lead. There is definitely some kind of biological script behind the production of a human brain, but the social stage on which it appears has a powerful part to play in shaping its owner’s successes (and failures).
The ‘Lost Girls’ are the many girls and women who have lived with the burden of feeling wrong, different, out of step, excluded; who have struggled with school, employment and relationships, who have found socialising an impenetrable puzzle and crumbled under the demands of daily life. With a diagnosis of autism, they may have obtained appropriate assistance…and their experiences would have informed what form that assistance should take. As we are now discovering with so many aspects of physical and psychological health, science has assumed that the default human is male. There’s so much to get cross about here!
In this engaging book, Gina Rippon, who is an Emeritus Professor of Cognitive Neuroimaging, introduces us first to the history of autism research. For many decades, ever since the condition was first investigated in the early 20th century, it was understood that autism was a primarily male condition. The prevalence, measured in different countries and over time, seemed always to come out at around 4:1 males to females. Some scientists suggested that autism was the result of an ‘extreme male brain’, or that being female provided some kind of protective effect, theorising that females had a inbuilt evolutionary advantage; that their brains were ‘hardwired for empathy’ in the words of prominent scientist Simon Baron-Cohen.
Either way, girls and women were missing from the picture of autism. In a telling statistic, Gina Rippon tells us that when she first started looking at autism research, she found that 70% of the studies were of males only. That’s why the subtitle of her book is How Science Failed Autistic Women and the New Research That’s Changing the Story.
After looking into what she calls autism’s ‘male spotlight problem’, she explores the ways in which female voices slowly came to be heard, and the question began to be asked; are females ‘less autistic’, or are they ‘differently autistic’?
As an example, highly focused and obsessive interests are a marker of autism diagnoses. Things like trains, weather patterns, number plates, makes of planes or mathematical calculations are suggested on the diagnostic tests. But autistic girls rarely have a passion for these things. It was an Australian-based researcher, Tony Attwood, who looked more closely at autistic girls. The topics of fascination might be boy bands or Barbies or stuffed toys, but it is the level of focus – the acquisition of an encyclopedic knowledge – that is the same. Just because Barbies and boy bands are ‘girly’, these girls were overlooked.
Another example: it is around puberty and the change from primary to secondary school that many autistic girls begin to struggle. They have developed skills and strategies to fit in – masking, camoflaging, self-monitoring, observing and learning from their peers – but these exhausting tools don’t work so well in the complex social world of adolescence. Depression, anxiety, borderline personality disorder and eating disorders tend to be diagnosed at this time rather than autism. I was fascinated to read that sensory issues tend to be more common among autistic females and this may feed into the development of problems with eating and food. Strong averse reactions to the smell, appearance, colour and texture of food, plus tendencies to rigidity in eating patterns, can give the appearance of anorexia, but the issue is not body image and the standard approaches miss the mark.
There’s so much more in this book, and I don’t think I can do justice to The Lost Girls of Autism in a short review. If you have any interest in neurodivergence, it’s a must-read.
We must find the flaws that have allowed us to lose sight of these lost girls, we must challenge the fuzzy and imprecise diagnoses, and we must confront the gender stereotypes that are distorting our quest for answers… Maybe we can (gently) deconstruct the elaborate camoflages that have allowed autistic girls to…’hide in plain sight’. We must listen to these lost girls so that autism researchers, autism therapists, autism advocates and the wider general population will have a clearer idea of what we should be looking for, what we need to explain, so that we can better understand the autistic world.
From the other side of the looking glass, by understanding female autism, we could learn about…the human race’s overpowering desire to belong’.