In 2018 Spectrum Women: Walking to the Beat of Autism was published by Jessica Kingsley Publishers. It quickly won the Independent Award for Best new book on autism in its category. Many positive reviews emerged including: By far this is the best book I have read about autistic females. As an autistic woman, wife and mother to a daughter on the spectrum, this book is such a treat. This book gives a sense of belonging, packed full of valuable information, honest insights and great advice, wrapped beautifully together with Dr Michelle Garnett’s supporting views.
I am immensely proud to have been a co-editor and author with Barb Cook, and 14 autistic co-authors to covering so many aspects of life for Spectrum Women from disclosure, sensory issues, communication, health, anxiety, self-care to relationships, parenthood and employment. Here I include an excerpt on the book, a contribution I wrote on the immensely important topic of self-identity in autism.
In autism the progression many autistic women experience as they discover their authentic selves is often arduous and fraught. From the early days of so very correctly following the rules, to intense intellectual curiosity and consequent research about how to get it right, through the trials of imitation, masking, using personas, overthinking, strong emotions and perfectionism, freedom to be oneself emerges as one is brave enough to make errors and to self-express. Somewhere within this journey, a diagnosis can provide clarity, but can also be presented or perceived as yet another deficit.
I find in my clinical work that the earlier I can present the diagnosis of autism to a young girl the better. The best time is as soon as the girl starts to notice that she is different, and this usually occurs around the beginning of primary or elementary school. The diagnosis can be presented by a parent or professional, and there are very clear guidelines about the best way to do this, (see for example, Attwood, 2008). In short, start with her strengths! Clearly describe and write these down, including her powerful commitment to honesty, her loyalty, her forthrightness, her ability to spot error, her compassionate heart, her intellectual curiosity, her logic, her talents etc etc. Next describe that we all have areas of challenge, and invite her to name some of hers. These may include difficulties in knowing what to say at times, taking longer to process social and emotional information, finding some sensory experiences extremely challenging etc. She will be delighted to discover that the list of her strength and capacities is far longer than the list of her challenges. Once she understands these lists, let her know that there are others like her, about 1 in 100. Because this unique profile of abilities has been spotted, there is a name for it, and then use the name that you feel most comfortable with, e.g. autism, ASD, Asperger’s, Aspergirl. Share positive literature with her, for example, Danuta Bulhak-Paterson’s wonderful book, “I am an Aspie Girl” for children and teenagers, and the inspired “Aspergirls” by Rudy Simone for women, and “All Cats are on the Autism Spectrum” by Kathy Hoopman for everyone.
I find that knowing about autism for a girl on the spectrum is a precious gift, providing a logical scientific explanation for differences that she is excruciatingly aware of, but in the absence of such an explanation she has received pejorative labels that are character assassinations, such as “difficult,” “lazy,” “naughty,” “stupid,” or “weird.” Without a proper explanation, such labels start to form the basis of a negative self-identity.
Autism is only one part of who that girl is. Understanding and integrating all aspects of the girl’s being with love and compassion is the pathway to freedom, self-fulfilment and a meaningful life. For example, many girls walk around feeling as though they are computers perched upon a set of shoulders, with the body underneath being the enemy. For example, anorexia nervosa is overrepresented in autistic girls. Emotional dysregulation, including experiencing crippling anxiety and overwhelming rage is common for girls and women on the spectrum, and is in part a result of lack of awareness or integration of the sense of the body into the self. The girl or woman on the spectrum is her mind, her body, her heart and her spirit, through all these mediums she expresses her unique self, her personality.
One of the underlying reasons that autistic girls and women struggle with a sense of identity, or expression of personality, is her problems with innate and automatic perspective taking, or ‘theory of mind,’ that are part of autism. If a person has difficulty understanding another’s mind, that person will also have difficulty understanding their own mind. Self-reflection is difficult for a person on the autism spectrum. Often the person knows themselves, their thoughts and their feelings only in action (including in being), by expressing themselves through writing, talking, drawing, painting, dancing, theatre, playing music, doing yoga, meditating, playing sport, being in nature etc.
This is one of the reasons that our autistic community members need our love and support. They need to feel alright just as they are, lovable just as they are, in order to be able to take risks and express their true selves. Love overpowers fear, including self-love.
References
Attwood, T. (2008). The Complete Guide to Asperger’s Syndrome. JKP: London.
Bulhak-Paterson, D. (2015). I am an Aspie Girl. A book for young girls with autism spectrum conditions. Jessica Kingsley Publishers: London
Hoopman, K. (2020). All Cats are on the Autism Spectrum. Jessica Kingsley Publishers: London
Simone, R. (2010). Aspergirls: Empowering Females with Asperger’s Syndrome. JKP: London.
