What’s it like to realise you’re autistic? And how do you start to ask the world around you to accept that? Sandra Thom-Jones explores theses questions in her new book ‘Growing in to Autism’ – a personal, funny, endearing and enlightening memoir that also contains rigorous explication of the nature of autism. BroadAgenda’s Ginger Gorman had a chat with Sandra.
How would you describe what your book is about in a nutshell to someone who doesn’t know anything about it?
My book is about being autistic in a predominantly non-autistic world, particularly as a late-diagnosed autistic woman.
When I was diagnosed I read everything I could find on autism in women. As an avid book reader, I read lots of memoirs, which were really insightful and engaging but left me with lots of ‘why’ and ‘how’ questions.
As an autism researcher working in a university, I read lots of academic journal articles, which provided detailed scientific information but didn’t connect to my lived experience. I wanted a book that explained different aspects of what it is like to be autistic, explaining the characteristics referred to in the literature but in a way that was more human and made sense to me as an autistic person.
The psychologist who had conducted my diagnosis said to me “you should write on”. At first I laughed at the idea, then I started writing…
You book starts with a crisis. Tell us about that?
I reached a point in my life where I was deeply unhappy and unfulfilled, but at a loss to understand why. I had everything I could possibly want – beautiful house, great job, wonderful husband, gorgeous kids.
By the standard external measures I was ‘successful’, but I felt completely lost.
I was certain that I was missing out on something significant, and even though I had no idea what it was that I was missing its absence made me so anxious that some days I felt like I couldn’t breathe. For a long time I thought that it was because I was getting older and that it was a normal thing to worry about getting old and not having “done things” (even if I had no idea what the things were that I hadn’t done).
I had many long conversations with my husband about my anxiety about getting older – which is what I thought it was – and my desperate need to figure out what was missing. The more we talked, the more I realised that what was missing wasn’t something external. It wasn’t a ‘thing’ I needed to own or a ‘place’ I needed to go or a ‘goal’ I needed to achieve.
What was missing was me. I didn’t know who I was or what I wanted or what made me happy.
I had put so much energy into being all the things I was ‘meant’ to be – good daughter, student, employee, friend, wife, mother, colleague, manager, boss, leader – that I had lost all sense of who I actually was underneath the ‘me’ I worked so hard to be in order to meet other people’s expectations.
How hard was it for you to get a diagnosis? Are you glad you did (that’s not the right choice for everyone – why not)?
I was very fortunate in a number of ways in seeking a diagnosis. That might sound odd from someone who received their formal diagnosis in middle age, but it is important to acknowledge that many people do not have the supports that I do. Access to diagnosis is virtually impossible for many Australians; there are extremely long waiting lists to see clinicians with expertise in autism, and Medicare does not cover the costs of diagnostic services for people over the age of 13.
I am very glad that I took the step of a formal diagnosis. While I had ‘known’ that I was autistic for some time, an understanding shared by my family and friends, the diagnosis removed any lingering doubt that I just needed to try harder to hide the aspects of myself that made me different.
Having the diagnosis gave me the confidence to advocate for the things I needed at work and – even more importantly – to advocate on behalf of other autistic people who came to me for support and advice.
I have to disagree with the suggestion that diagnosis is ‘not the right choice for everyone’. In my experience, knowing that there is a reason for your differences, that you are not faulty or flawed, and that you belong to a community of people like yourself is good for everyone.
Disclosure, on the other hand, is not the right choice for everyone. This is because we live in a society where autistic people still experience systemic discrimination; where people focus on our challenges rather than our strengths, and exclude us from career and social opportunities.
Why is it harder for women and girls to get diagnosed?
There are a number of reasons why it is harder for women and girls to get diagnosed. Firstly, the diagnostic criteria are largely based on the way that autism is expressed in males, because most of the research into autism has been undertaken with males. This means that many autistic women and girls won’t appear to meet the diagnostic criteria, and is why it is essential that more psychologists and psychiatrists are trained in recognising and working with autistic females.
Secondly, the stereotypes that people have of autism, often influenced by media portrayals, mean that we expect autism to ‘look’ a certain way, and as autistic people we have all heard the phrase: “But you can’t be autistic, because I have an autistic son/nephew/neighbour and you are nothing like him”.
Third, girls and women have been found to be better at masking their autistic characteristics – that is, hiding the aspects of themselves that are different to others – which reduces the likelihood that their autism will be diagnosed. Masking also has a considerable negative impact on their mental and physical health.
Once you did get the diagnosis, how hard was it to firstly accept, and secondly to get on with/work with?
For me there wasn’t really a process of ‘accepting’ the diagnosis as I had come to the realisation that I was autistic over a number of years. Getting on with ‘being autistic’ in the more public sense was also relatively easy for me as most of my friends and colleagues were unsurprised by the diagnosis.
It was also easier for me than for many people as the diagnosis, and my disclosure of it, came at a point where I was already successful in my career so I didn’t have to fight to prove that I could perform in my role as an academic and a leader. The bigger fight for me – and the one that I think is critical for creating a supportive culture for autistic people in all areas of employment – is making people understand that I have not achieved career success ‘in spite’ of my autism but rather because of the way my autistic brain works.
You write a lot about social interaction and trying to understand “the rules.” You also write about overwhelm. Why can these things be hard for people with autism? Can you give us examples from your own life and how you’ve dealt with them?
Social interaction is hard. While every autistic person is different, we all have challenges with interpersonal communication. Many of us learn to communicate in a seemingly neurotypical way, but like any unnatural learnt behaviour it takes energy and concentration.
My challenges with understanding non-verbal and social cues mean that I am constantly worried that I will say or do something that offends or irritates the other person, or that I will misinterpret their actions or intentions.
A lot of things that come naturally to non-autistic people take conscious effort and energy for autistic people, including social interaction and processing sensory information. Many of us experience sensory hyper-sensitivity or hypo-sensitivity, meaning we are over or under-sensitive to sensory inputs like lights, sounds and smells.
I find grocery shopping overwhelming; the bright fluorescent lights, the piped music, the closed-packed shelves, the people moving and talking.
The energy it takes me to process all the sensory input and locate and select my groceries means I have no resources left to make conversation with the checkout operator or other customers. So, when I go grocery shopping I wear my sunglasses, I skip the freezer aisle, dodge the crowds, and rely on my husband to do the small talk with others.
How hard is dating for women with autism?
Dating is complicated for most women, but can be especially tricky for autistic women. As a happily married woman with grown up children, I haven’t been on a date for over two decades, and I am extremely grateful to have avoided dating in the era of social media.
Dating is a particularly intense form of social interaction, and there can be considerable pressure on women to mask their autistic characteristics when forming and maintaining romantic relationships.
The combination of needing to mask our real selves to fit in and feelings of inadequacy make autistic women particularly susceptible to domestic violence and other forms of relationship abuse. Far too often autistic women (and men) are victimised by partners who use their social and communication challenges to belittle and control them.
What positives does autism have?
Every autistic person is different, just like every non-autistic person is different, but there are some areas where autistic people tend to excel.
Autistic people tend to be loyal, honest, and have a commitment to doing the right thing and ensuring people are treated fairly. We tend to have focused interests, attention to detail, and a commitment to getting things right. We also tend to have the ability to think creatively and to develop novel solutions to problems.
- Growing in to Autism by Sandra Thom-Jones is out now
Ginger Gorman is a fearless and multi award-winning social justice journalist and feminist. Ginger’s bestselling book, Troll Hunting, came out in 2019. Since then, she’s been in demand both nationally and globally as an expert on cyberhate and the real-life harm predator trolling can do. She's also the editor of BroadAgenda and gender editor at HerCanberra. Ginger hosts the popular "Seriously Social" podcast for the Academy of the Social Sciences in Australia. Follow her on Twitter.