Interview by Jen Elcheson, Spectrum Women Sections Editor, Feature Writer, Interviewer
Camouflage is a Jessica Kingsley Publishers (JKP) new release this year in the ever growing literature on autism in girls, women, and gender-non-conforming people. Are you or someone you love newly diagnosed and don’t know where to begin, what book to start with, and looking for an informative, user friendly basic primer on how autism can present in girls and women? Are you a clinician who is brushing up on your research? Look no further!
This accessible easy to read book is a great starting point of reference on some of the differences between females and males on the spectrum and explains why girls and women (and gender-nonconforming folk) are often overlooked when it comes to being professionally identified. It also discusses diagnosis, navigating friendships and relationships safely, the importance of finding a peer group of fellow autistic people for support, and to help feel less alone in the world, as well as other topics and helpful tips.
Importantly, the author of the book, Dr. Sarah Bargiela, a U.K. based clinical psychologist, backed up her research by consulting with actually autistic women on their experiences, so their input shines through the entire book.
And, as a bonus, it is not just any book, it is also written and illustrated in the same format as a graphic novel, therefore it is a quick, easy read and will appeal to a variety of readers.
I decided to ask Dr. Bargiela some questions about this new release and this is what she had to say…
Can you tell us a bit about yourself and your own work in regards to autism and females?
I became interested in autistic girls and women when I was working in a psychology service for children. There I was helping a little girl with her social anxiety who we also thought was autistic but didn’t meet all the assessment criteria at the time, so ended up not getting a formal diagnosis of autism. This got me wondering about whether this was something common to other girls too and later decided to do some research to better understand women’s experiences of diagnosis. I published this as an article together with Dr. Will Mandy and Robyn Steward and it became the inspiration for the characters and chapters in the book, Camouflage.
What made you interested in working with autistic people?
While working on a summer holidays camp for autistic children, I was fascinated by how their experience of the world was so different to mine and I wanted to understand it better. This inspired a career change from design to clinical psychology and over the past ten years, I have been involved in either research on, or clinical work with, autistic people. I continue to love the intensity with which many of the autistic people I have spoken to encounter in everyday life and the variety and dedication they have to their special interests. I also find how autistic people communicate hugely refreshing as they are often very honest and forthright.
How did this book come to be? Where did you get the idea for making it a graphic novel?
I was presenting early findings from the research on autistic women at a conference and JKP approached me and asked if I’d write a book. At the time, the idea of a book felt too daunting, so I put it off until I stumbled across “Trauma is Really Strange” – a medical comic illustrated by Sophie Standing. Through her illustrations, Sophie had made the often complex and abstract experience of trauma so easy to understand that I immediately thought this is how I’d like people to learn about autistic women too. I met Sophie for a coffee and luckily, she was really interested in the project, so from there, Camouflage was born.
I’d used Sophie’s book “Trauma is Really Strange” with one of my patients and her illustrations communicated concepts, such as dissociation and hypervigilance, far better than explaining them with words alone. Because of this, I thought illustrations would lend themselves well to communicating the more nuanced aspects of what could be awkward or an effort in social situations, or the emotive aspects of what not getting diagnosed or not fitting in might have been like for autistic women. It was really fun working with Sophie – she was curious and really intuitive about how to illustrate and show certain aspects of autistic women’s experiences. She was very sensitive in developing a visual language and metaphors that were easy for everyone to understand.
I really appreciate that you got input from actually autistic people. How did you find/meet the autistic women you consulted with? How many women did you consult with?
The three characters in the book are an amalgamation of the women’s stories who I’d interviewed for my research. I advertised on social media using a snowball sampling method: early participants shared the advert with other autistic women who they thought might be interested in taking part and I was pleasantly surprised by how quickly women came forward wanting to talk about their experiences, as often recruitment can be one of the hardest bits of research.
Were you surprised by any of your findings?
I was really interested in knowing about camouflaging behaviours, both conscious ‘putting on a mask’ and less conscious social mimicry, for example, one woman told me she’d taken on an Irish accent after going to a Girl Guide camp without even realising!
But the most shocking finding was that of the 14 women I’d interviewed, nine had experienced sexual abuse. This felt like a staggeringly high number. When probing further, the autistic women told me they thought it was related to ‘social naivety’ because they had excluded from peer relationships, which was where other women would often learn the unspoken rules of relationships. For example, that you could say ‘no’ to sex when you didn’t feel like it or you could walk away from someone who made you feel uncomfortable. Other autistic women also described their difficulty with ‘reading between the lines’ when someone was flirting with them or being predatory, leading them to being trapped in situations or relationships from which they felt unable to escape. This finding above all others made me feel as though there was a sense of urgency in communicating that autistic women exist and that it is also important for education and health services to provide information on how to stay safe in relationships too.
Though it was briefly touched on in the book, do you have any input on how we can use and expand on this information and apply it to those who are not cis gender and are gender non-conforming, non-binary and trans?
The book reports research on cis-gendered women’s experiences of being missed or misdiagnosis. However, other recent research has also found that men also display ‘female’ autism traits that the book reports, such as camouflaging. In this regard, using gender to describe certain traits that are missing from the current autism diagnostic criteria may not be useful.
Currently, autism research is at a point where it is now recognising that females keep being missed or misdiagnosed. The literature also acknowledges that some of these ‘female’ traits can also appear in men, leading to men getting missed or misdiagnosed too. Therefore, there is no reason why the book couldn’t be used as an exploratory tool to open conversations with individuals of all gender identities regarding their experiences of autism too.
Ultimately, the hope is that in the not too distant future, autism diagnostic criteria will incorporate ‘female’ autism traits, making a gendered typology of autism redundant.
Do you have any other books planned?
I do, Sophie and I are currently collaborating on another exciting project, together with behavioural scientist and researcher Chris Perry. More details to follow later this year!
Is there anything else you would like to share with us?
I would like Camouflage to reach as wide an audience as possible – the more people who know about autism in females, the sooner autistic girls and women will be able to ask for and get the support they need, at school and in the workplace; to live a life without the need to ‘pretend to be normal’.
Thanks for taking the time to talk to us, Sarah! Go to jkp.com to purchase your copy today!