Photo credit: Network Autism
Catriona was researching autism for a PhD. After assessment she discovered she was autistic herself! Mother of two, and a lifelong feminist, she has acted as an advisor to high level enquiries including at Scottish government level. She has given many conference papers and delivered training to organisations extensively. This year she was awarded an OBE for services to autistic women. Read how philosophy has helped in her journey.
Autism: Difference, not Disorder
Catriona Stewart, Scotland
In the 1st year of my doctoral training it dawned that autism was something affecting me personally. I didn’t go for a diagnostic assessment until some years later. We tend not to, those of us with children to prioritise, and work to do.
When my children were young, I was working as a lecturer and clinic supervisor. The university offered me a doctorate studentship to continue my earlier master’s research into autism. When I went on to my PhD, no one else was focused on women/girls at all.
I like numbers and logic, too, and there were statistical anomalies in the narratives of autism as male-specific that bothered me. No one was talking about the experiences or needs of autistic women, although they clearly existed. So the starting point was a solitary one. I didn’t really understand what I was taking on. I threw a pebble into the pond but didn’t know where it would take me.
So, what is autism?
Autistic people are just people, with strengths and assets, challenges and needs. Our brains work differently to the majority – how we experience the world, how we process information, how we communicate. Many have co-existing conditions such as dyslexia, or the visual sensory processing condition (I have that).
Autism is an umbrella term for a spectrum of neurodevelopmental (brain development) differences. Many of us are working to have autism redefined, to remove it from the medical model as a mental health disorder which it is clearly not.
Autistic differences sometimes involve abilities and talents but also innate characteristics that cause impairment. It’s the ‘spikey profile’ of autism. For example, I have an exceptionally high IQ, but can get lost in a phone box! And it can be hard getting organised on a daily level, as I have issues with executive functioning. With improved understanding and accommodations, autistic lives improve and society can benefit from our contributions.
Hyper focus in autism
I continue to conduct primary research on the lived experiences of autistic women and girls, which I use to lobby, instruct and educate – and yes, I am autistically tenacious! Sometimes characteristics of autism, such as our ability to ‘hyperfocus’ are strengths. But people dismiss and pathologize these.
The misunderstanding and stigmatisation of autism lead to very poor self-esteem. Autistic girls often have difficulties even forming a self-identity – they are trying so hard to ‘fit in’. It is a loss for society when young autistic individuals fail to access education or fulfil their potential as human beings.
Our abilities to focus, to pursue something with determination and commitment is called ‘obsessive’ and ‘inflexible’. This brings a qualitative difference. But for us, our ‘special interests’ are just our ‘interests’; it’s the attention and focus that marks us out.
Autism is embedded in the world of ‘geek’. We are there in excellence and innovation in science, engineering, computing, music, art, entrepreneurship, literature, dance, all areas of human endeavour and expression. That includes spirituality and religion.
SWAN – for women and girls with autism
As an adolescent, I couldn’t see a path to the future. Autistic girls are sometimes described as swans. They appear to glide serenely on the surface of life while paddling desperately underneath just to keep afloat.
The Scottish Women’s Autism Network (SWAN) started in 2012 as a response to what I had learned through my PhD study. Professor Aline-Wendy Dunlop from Strathclyde University, had the job of rolling out the 10-year Scottish Autism Strategy. She liked my suggestion that we could do with an autistic women’s network and so the SWAN hatched!
Invitations went out to a small number of autistic women known to Aline-Wendy. I chaired and led, but we quickly formed an effective group, creating a mission statement and a list of priorities. Top priority was the creation of leaflets: 1) for health care professionals to guide them when working with autistic women and, 2) tips and guidance for autistic women as patients.
Finding my own identity
A year after founding SWAN, something happened that made me want to understand more the specific characteristics of being autistic that have impacted on my life-choices in ways I still had to unravel. A crucial aspect of identifying as autistic is retrieval of self-identity. Many autistic women describe efforts to ‘fit in’, to meet society’s and other people’s expectations. This becomes a process of self-denial, resulting in exhaustion, poor self-esteem and mental health issues, such as anxiety and depression. Regaining a sense of who you are, building on self-awareness and understanding, learning to live authentically and with self-care, are life-changing benefits.
Finding the School
For me, this particular swan, my life’s path has been a tumbling and flowing river. I have stayed upright largely through my faith since childhood: an awareness of something ineffable, a sense of something other, more immense than we could know; for which I spent many years trying to find a spiritual home, a place to express that faith.
In 2003 I met the School of Philosophy and found an oasis of understanding and connection. And tools to help cope with the stresses of daily life in a place to study and learn. This supported my PhD studies. I even enjoyed writing ‘Chapter 3: Methodology’. Discussions in the School made the study of ontological (who we are as human beings) and epistemological (how we know) frameworks interesting and practical.
Beyond my comfort zone
With SWAN, I’ve had to find focus, determination, diplomacy, discrimination, self-awareness, and self-control (not always successfully!). SWAN’s aim is to improve the lives of autistic women and girls. This has often meant going out of my comfort zone to do things that have felt quite terrifying, from presenting to an audience of 500 to live interviews on national tv.
The philosophy of the School has been there throughout. Pausing and keeping in mind that the work is not about me. Here is a need – I just happen to be there to respond. My commitment is to serving autistic girls and women, and I do that with all my abilities. When I’m feeling unsure or nervous about something, I let it go. Then I dedicate it to the Self within, and ask the Absolute to take care of it for me.
These things have supported me, taking the work to places and people I wouldn’t have thought possible. They underpin the ethos and principles behind everything I do – or at least, try my best to do, which is assert the human rights of a previously ‘invisible’ and neglected population.
Savouring this moment
SWAN has had a ‘flow’ quality to its progress. Core values for SWAN’s development are resilience, flexibility, listening as well as speaking and responding. We run peer-support meetings across Scotland now, and online closed support forums. Autistic women voluntarily give their time and share their experience to help and support each other.
The work can be challenging, and sometimes heartbreaking, but there are achievements to celebrate. Overwhelming warmth and generosity greeted my OBE award. There was joy from many autistic people, not only women, from as far afield as South Korea and Israel, who have claimed it, quite rightly, as being for them too. It’s a validation of the work and a collective honour.
Listen to an interview with Catriona