Title: The Lost Girls of Autism: How Science Failed Autistic Women - and the New Research That's Changing the Story
Author: Gina Rippon
Genres: Health, Mind & Body | Nonfiction (Adult) | Self-Help
Pub Date: 12 Mar 2025
Pages: 336
ISBN: 9781035011629
Format Read: encrypted PDF (LCP Protected)
Accessed Via: Net Galley Shelf app (Android)
Hashtags: #TheLostGirlsofAutism #NetGalley
Rating: ⭐️⭐️⭐️⭐️ (4 stars)

The short version:

4 stars because this information is critical - even life-saving - to put out into the world; 2 stars for actual applicability to most autistic women.

The full review:

I'm an autistic woman with AD(H)D, or in current neurodivergent parlance, I'm an AuDHDer. I work in healthcare and I'm deeply interested in academia, clinical research, and very proud to witness the excruciatingly slow but increasing awareness of how gendered, racist, and broadly biased the scientific method has been historically and continues to be. Suffice it to say, I'm another nameless/faceless statistic within the subject matter of this very book.

Like so many neurodivergent women, I'm Exhausted (with a capital 'E') and much of that exhaustion comes from just trying to live in a world that doesn't just feel like it's not built for me: it feels like it's almost custom-made to hurt me.

I have skin in the game; scientifically, that would reasonably suggest bias, but as most neurodivergent folx will (eloquently and imploringly) plead into the abyss, we are often ahead of the curve here when it comes to science. We have analysed, collated, collaborated, extrapolated, diagrammed, and peer reviewed our own experiences and those of our peers to a degree that, like the author herself discovered, is just begging to be datamined. Unfortunately, our data - like our lives - doesn't seem to have much value to the scientific community, or to the very loud, very intense world around us.

I'm also someone who has an extremely rare genetic disorder, and what's fascinating to me is that when I attend one of the clinical appointments for that disorder, I'm almost inevitably asked what I can suggest in terms of symptom treatment, what insight I can offer into patterns of symptom expression, what, essentially, the superspecialists crouched around me can learn from me. It's a weird feeling: a mix of hopelessness (the experts are gleaning each n=1 and hoping for broader applicability), frustration (if I'm hoping for answers, they aren't there), dejection (no cure in sight, constantly having to educate those I encounter, trying to advocate for myself because nobody else does), and a hint of empowerment (my analysis and insight into my own symptomology does have an actual, direct impact on treatment methods for others).

My experience of being neurodivergent is an excruciating inverse of my experience with a rare genetic condition: gaslighting, brushing off, minimising.

When I saw this book, I almost immediately hit the 'Read Now' button, but then stopped. Very often when autistic women access content about ourselves that isn't produced *by* ourselves, it can feel like a series of not just microaggressions, but attempts at annihilation. I had to consider whether I wanted to undertake this review, whether it was safe & healthy for me to do so, and whether there was any point.

Only 3 people have reviewed this book so far in NetGalley, and honestly, I couldn't let that be; I took one for the team.

It took me a while to come to grips with this book.

Coming to the end, it took me even longer to digest what the actual intended purpose of the book was, and its intended target audience.

This book explains the brief and very recent history of autism as a diagnosis, including the rise & fall of the Asperger's label. It explains how biological & medical science are deeply gendered, and how mental health & neurology are somehow even more gendered.

It explains the diagnostic criteria (and their changes) over time, and how these criteria have excluded autistic women.

It suggests reasons for 'gendered' differences in autistic expression, which are deeply enmeshed with gender norms / enforced binary gender roles in society. It goes into the nature vs nurture debate.

It also gives voice to the experiences of autistic women, the reasons for late diagnosis (or no diagnosis at all), the specific struggles & pressures that bear down on so many of us.

It offers fascinating, if frustrating, insight into how 'gendered brain' research is still ongoing to this day, because androcentric science is absolutely determined (despite a lack of evidence) to "spot the difference" between male and female brains (spoiler alert: biology isn't binary and neither is brain matter) and still trying to cram human physiology into a tidy binary. That there isn't a witty / wry parallel drawn here between how autistics can be prone to rigid or "black & white" thinking is a shame, because the irony is pretty intense.

Since the author is, according to her own introduction, neurotypical, there are parts here that feel off.

The entire section on sensory "sensitivity" focuses on a much less constructive way to look at what is actually happening: rather than "sensitivity" to various external & internal stimuli, our brains literally lack (or, to individual degrees, are deficient in) the ability to isolate or prioritise individual stimuli.

Saying someone is "sensitive" to sounds doesn't have the same impact as explaining that a given individual actively may not be able to prioritise giving attention / reacting to, say, an out-of-control car careening directly at them in the road versus the sudden blaring of a song in the car next to them at a red light. It can (and often is) that extreme. Offering examples like this makes the sensory processing aspect of autism appear much more like the very real disability that it is - the autistic person is at real risk due to the sudden sound due to an aspect of their body that they cannot change or control - rather than "sensitivity" (if only they were less 'sensitive' then they would be able to react 'normally' to the danger).

The fact that autism is categorised as a 'mental disorder' (autistic spectrum disorder) and is in the DSM (Diagnostic and Statistical Manual of Mental Disorders) is excruciating. Autism is a neurological difference; you can argue to its evolutionary advantage, and the reason autistics survived to this day. We are not 'mentally ill', though living in a world that refuses to acknowledge us means that we all have mental health problems. I've heard it stated somewhere that there isn't an autistic adult anywhere in the world who doesn't have PTSD (or, more likely, cPTSD) and I would wholeheartedly agree with that assessment.

This book does nothing to explore neurodivergence (though it nods to the neurodivergent community) as a viable alternative to 'mental disorder'.

The author does try, though briefly, to wade into the murky world of 'severity'. Nobody would disagree that there is a difference in the lived experience of someone who has a job, relationships, autonomy, etc as compared to someone who cannot independently self-care, who is nonverbal or fully asocial, and/or who has significant developmental differences. These are things that the neurodivergent community is actively grappling with, and in many ways the fact that "Asperger's" was removed as a separate condition and absorbed into "autism spectrum disorder" created some chaos, yes, but also a huge amount of much-needed discourse into what labels meant, why they were important, and what alternatives may exist. Currently the conversations focus more on 'support needs'. In the example above, the first individual may have 'low' support needs (ie, mostly they can manage things on their own, and/or with the understanding & accommodation that their relationships provide) whereas the second individual may have 'high' support needs (ie, they may not be able to live independently or may have very limited capacity).

This is where focusing on how autism is a disability, and therefore something which can & should be accommodated just like any other disability, would be critical. Often autistics only need the metaphorical equivalent of a ramp to be able to hugely improve their quality of life (though, just like someone needing a ramp, almost never get that ramp, despite how obvious & easy it would be to create one for them - but that's a separate conversation about ableism) but instead the idea of a 'mental disorder' means we get stigmatised, as though we will somehow behave dangerously, threateningly, or (gasp) weirdly. Categorising autism as a disability rather than 'disorder' (illness) would go a long way towards changing the discourse. Sadly, that isn't suggested.

The author also insists on the use of the word 'camouflaging' to describe the behaviours autistics, especially autistic women, use in order to present as 'normal' and to facilitate acceptance. Before reading it in this book, I'd never even heard that term; the commonly-understood term is 'masking'. It's an odd choice that isn't explained.

The subject of comorbidities is only very briefly skirted, and only in the sense of comorbidities caused by the stress/trauma of living in a hostile world: things like depression, eating disorders, self harm. Misdiagnoses (ie how women will be diagnosed with 'anxiety' instead of 'autism') are also mentioned, but no correlation is made to the misdiagnosis or underdiagnosis of all neurodivergent women, or how women are less likely to be diagnosed as both autistic (because they exhibit fewer 'a problem for others' symptoms vs 'a problem to themselves/internally') and how they're undiagnosed or underdiagnosed with ADHD (because the 'hyperactive' element, which is a gendered diagnostic criteria favouring boys, is often suppressed, missing, or expressing itself in different/masked ways in girls).

There is no mention of the growing consensus that neurodivergence is a spectrum, and that the autistic experience and AD(H)D experience may be part of a single spectrum rather than separate conditions which just happen to have a tremendous amount of overlap.

There is also no mention of the fact that even the spectrum idea - one that, again, lends itself to linear thinking, with 'less severe' on one end and 'more severe' on the other - should be scrapped in favour of 'spiky profiles': that our skills, challenges, or abilities are deeply individual, and it's more helpful to use a spiky profile scale to gauge a person's individual capacity both broadly and in different settings (ie, your spiky profile may be different at home, vs at a stressful new job interview in an unknown location, etc).

The exclusion of these things is quite disappointing.

What's even more disappointing, however? There is zero - ZERO!! - suggestion of how we can actually support autistic women.

The grim fact is that if we do not have significant enough care needs to be fighting for access to things like a carer or a care facility, there is no support for us.

The author writes from the UK, where I live; there is nothing at all for autistic adults in terms of support.

So in many ways, the author is keen to demonstrate that autistic women exist, that the diagnostic criteria and testing methods are flawed, and we should be better able to include autistic women in diagnosis. But the reality is when you are diagnosed (if you can even get diagnosed, that being the entire point of this book), the end result is... nothing.

Nothing at all.

I know the author can't change that, but not including resources, or suggestions, or even links to autistic communities / groups is, I think, a missed opportunity.

I'm no less exhausted, and I'm angrier - not at the author, but at the scientific community. We need to be seen, we need to be listened to, we need to be included. But we also need to be understood, respected, and supported. Will that happen in my lifetime? It doesn't look terribly likely.

Thank you to Pan Macmillan, NetGalley & the author for providing access to this eARC for consideration of review.
All opinions are my own honest & unbiased feedback based on the copy provided.
The format available for this review was a time-limited LCP Protected PDF, which meant that I could only read this within the NetGalley Shelf app and couldn't use my preferred (accessible) reading apps. The Kindle version was completely illegible, with a lot of letters scrambled and omitted. I note this to encourage publishers to consider using time-limited EPUB instead so as to allow disabled reviewers to use accessibility tools and/or reading apps with more flexible accessibility features (I personally like PocketBook, though it's not perfect), and to encourage NetGalley to consider investing in accessibility features for its own app. The above of course has no bearing on my review, but does limit its thoroughness. Of note, neither Pan Macmillan nor NetGalley responded to my request for a more accessible format.

In The Lost Girls of Autism, renowned brain scientist Gina Rippon delves into the emerging science of female autism, asking why it has been systematically ignored for so long. The book looks at autism from multiple female perspectives, reflecting on how it has been researched historically, and criticising the very male-focused research.

This was an interesting read, sharing a range of perspectives on how autism can present differently in different people, and how this can be affected by a range of circumstances. It shows the impact of exclusionary research and advocates for supporting individuals who are often missed, with an emphasis on widening research to include a range of demographics. These are issues which aren’t just relevant to autism, but science in general, and I found the reflections insightful and informative.

It’s also an incredibly well researched and evidenced book, exploring autistic experiences in detail, and commenting on the complexities of neurodivergence and diagnosis. I only wish it had been longer to include more diversity, as the individual perspectives were something I really loved.

Thank you so much to @bookbreakuk, @panmacmillan and @netgalley for this gifted copy 😊

*ad-pr: I was gifted a copy of this book in exchange for an honest review. All thoughts and opinions are my own.*

This insightful and fascinating book delves into the critical issue of why girls with autism have often been misdiagnosed or overlooked in the realm of psychiatric conditions. As a late-diagnosed autistic individual, I resonate deeply with this book.

The author draws from a robust array of reputable sources, instilling confidence in the reader and providing a well-rounded perspective on the topic. The explanation of the pathophysiology of autism is fascinating, as it uncovers the complex interplay of genetic, environmental, and neurological factors. However, it may be a bit challenging for those without a basic understanding of these concepts to fully grasp the intricacies involved.

This book not only sheds light on the unique experiences of autistic girls but also emphasizes the importance of identifying and supporting these often-missed individuals, helping them realize their potential as the remarkable and fascinating women they are meant to be.

In conclusion, this book is a vital resource for anyone looking to understand the complexities of autism in girls and the significant impact of misdiagnosis. It is a call to action to ensure that we find and support all those lost girls in our communities.

I found this to be a fascinating and deeply researched book. Rippon delves into the history of autism research, the biases that have shaped diagnosis criteria, and the unique ways autistic girls navigate the world.

It is an eye-opening and important read, shedding light on why so many women and girls are overlooked and misunderstood. However, it is heavily rooted in scientific studies and neurological research, which may feel dense for some readers especially those looking for a more narrative-driven book or personal accounts of women/girls living within autism. Despite this, Rippon’s work is incredibly valuable for anyone interested in autism, neuroscience, or gender disparities in medicine.

A very informative review of female autism, going through the history to modern day. Read a little like a science paper in places, but was engaging and interesting.