Book Review

The Lost Girls of Autism

by Gina Rippon (Macmillan) £22.00

Apparently, 1 in 36 people in the US are autistic and 1 in 57 in the UK – this for a condition which, when ‘discovered’ in the 1940s, was considered to be very rare. Cognitive neuroscientist Gina Rippon fully acknowledges the strange and “shape-shifting” nature of ‘autism’ that has led to this huge increase. “What is autism?” she asks. “Or perhaps we should say, what does autism look like? We are not (as yet) looking at any agreed-upon physical characteristics. … The fact still remains that currently autism is defined by a set of behaviours and not, as yet, by any measurable biological characteristics, genetic or neurological.”

So we sort of know what autism looks like, although we still don’t really know what autism is? Using that as her basis, Rippon proceeds to show that female autistic characteristics have for far too long been left out of the autism story. She compellingly details how research has focused around males, how diagnoses have centred on males (few females, in the past, were even sent for diagnosis), and how support, such as it is, has been geared towards males. She offers a profound, heartfelt mea culpa to the female autistic community whom she feels that she, as a scientist, unfairly ignored as well, until enlightenment hit.

Rippon is a great writer and extremely thorough in her research. She describes how the prevalence of autism grows and grows, as the criteria for diagnosing it widen and widen, and she fully acknowledges the further confusion caused by gendered expectations of behaviour (which lead autistic girls to strive for social acceptance, despite the heavy physical toll of adopting camouflaging or masking behaviours, in order to fit in). “Social psychologists have reported that the need to belong appears to be as powerful a motivational drive as basic survival instincts such as feeding or fight or flight,” she comments.

It is interesting to learn that, rather than psychiatrists Kanner or Asperger being the fathers of autism, there was a ‘mother’ of autism publishing a good 20 years before them. Soviet child psychiatrist Grunya Efimovna Sukhareva identified behaviours now commonly accepted as autistic, and distinguished between their presentation in girls and in boys. But, of course, in the 1920s, women’s pioneering work in any field was very much pushed under the radar and she never received the credit for her work until rediscovered by more modern researchers.

Rippon meticulously unpicks the efforts to find a genetic, brain-based cause, the wide range of work that misled us into thinking autism a male issue and the later work showing clear differences between manifestations in boys and in girls (for instance default mode connectivity is well known to be decreased in boys but turns out to be increased in girls). She looks at teenage brains and the tendency to focus on secondary symptoms in autistic girls, such as eating disorders, self-harm or gender dysphoria, overlooking autistic traits. The traditional male presentation of autism does, indeed, involve low interest in fitting into the social world, but, she says, “add females to the equation and … if anything, they illustrate a social brain system in overdrive, with persistent self- (and other-) monitoring accompanied by hyperconnectivity and overactivation.”

She has boundless empathy for all the girls and women who have struggled to cope in today’s world with their unacknowledged brain difference and calls for research to radically switch course. Ask better questions and we will get better answers, she says.

I, too, have empathy for the many women whose moving stories are told, but I still struggle with the fact that Rippon’s entire premise is that autistic females need greater recognition while simultaneously recognising that no one can identify what autism actually is. Luckily, this book is so informative, even-handed and highly readable that you will make up your own mind on that score.

Reviewed by Denise Winn