Just because you can’t see autism, doesn’t mean it’s not there, says Sarah Hendrickx. Inside might be another woman just waiting to go home and do a little flap.
A few years back, in my early 40s, I was diagnosed as autistic. By this time, I had written six books on autism, completed a Masters degree in autism, delivered nearly 1,000 autism training/conference sessions and worked with several hundred autistic people in a professional capacity.
You may think it strange that it took me so long to work out but it’s less of a conundrum when you understand the history of autistic females, of which I am one of many with this late diagnosis.
Historically, autism has been considered to be a predominantly male condition. This has never been true. Original samples in research papers focused on male children. This was perpetuated over the years and resulted in the development of a profile of autism based largely on characteristics seen in boys.
And guess what? If you’re essentially looking for the components of a boy, you’ll find a boy. So, you can see that if your starting point is skewed, with the subsequent decades of research producing an increasing evidence base, along with generations of diagnostic clinicians who have been taught using this skewed evidence base, this leads us to an inaccurate autism diagnostic ratio of males and females.
“I am considered intense, harsh, blunt, aloof and standoffish which puzzles me, as inside I am childlike, scared and desperate to do whatever it takes to be liked – if only I knew what that was.”
I had been doing what most of the experts had been doing: comparing myself with autistic males, more specifically, my partner, Keith, who was diagnosed during the early stages of our relationship.
I knew that I found him easy to be with when he annoyed the hell out of everyone else and that he gave me a sense of ‘home’ that I’ve never had, but our life trajectories couldn’t have been more different.
Keith has had two jobs and a small handful of relationships; I have had more than 35 jobs, two marriages and multiple relationships. Keith actively resists new experiences and lives a Zen-like, emotionally calm existence, while I deliberately seek out challenges and live in a chaos of impulsions, projects, anxiety and utter despair. How could this be the same cognitive brain that we shared?
My own realisation came after many years of work in the autism field, where I met an increasing number of diagnosed adult women, whose stories would echo my own. They presented with a picture that was often quite different from the traditional nerd/loner male profile that I had been taught.
Tales of repeated social attempts; an almost obsessive desire to ‘fit’, to ‘get it right’, to solve the puzzle of people, which resulted in the devastating sense of repeated social failure that I recognised so well. I identified with stories of naivety, gullibility and a failure to pick up signals and agendas which had led to abusive or predatory relationships; those times when friends had wondered how I could be so intellectually brilliant, but so socially stupid.
These diagnosed women shared my paradox of wanting to be with people alongside a very limited capacity for being with people. This autism made sense of my life. Research is now catching up and revealing that girls and women can present a different autistic profile and this is why they continue to be missed.
“On the plus side, autism brings me a complete lack of regard for status, possessions, hidden agendas, point scoring and spite along with a deep, emotional, sensory connection to nature, animals and music.”
People ask what difference a diagnosis can make at my age. It makes all the difference in the world. Confirmation means that we weren’t wrong, stupid or rude. It means that for all these decades of being frowned at because you said something ‘weird’, being missed off invitations, wanting to talk about permaculture when everyone else wants to talk about EastEnders and hitting the deck with your hands over your ears at the sound a passing police car are all explainable.
And the explanation isn’t – as you had suspected – that you are crap at life, it is because you process information differently. You see things that others don’t; you miss things that others see. Intricate detail and social signals are given different priorities in the autistic brain.
Diagnosis means you can find your tribe: people who nod with empathic recognition at your tales of faux pas. Yes, we empathise – with other autistic people who share our experience of navigating a baffling illogical world; just like you non-autistic people do with each other. It’s just cross-cultural empathy that neither of us is much cop at.
This process of recognition made me start to view some of the things that I have always done and considered just quirks through new eyes. I cut the labels out of my clothing and am constantly complaining of being itchy. My sensitivity to light made my teenage wearing of sunglasses indoors seen as a pathetic attempt at coolness rather than pain management.
I am considered intense, harsh, blunt, aloof and standoffish which puzzles me, as inside I am childlike, counting how many times someone says ‘um’ in a meeting, scared and desperate to do whatever it takes to be liked – if only I knew what that was.
“I hide much of my true self as I learned early on that ‘I’ am not deemed acceptable. And so, when you meet me, you will think – and possibly even say, which cuts me to the core, ‘You don’t look autistic to me.’”
I have intense passions which have led me to start businesses (cornflakes at festivals or cross-stitch kits, anyone?), buy houses in foreign countries and almost buy many more (and nearly a B&B in Morecambe), do some small-scale stalking of celebrities (sorry, Daniel Kitson, Henry Rollins, et al) and know everything there is to know about harrier jump jets (information now long forgotten, so please don’t ask).
I flap my hands when I’m happy or panicking and squeak when I’m really happy. I get very involved in the plotlines of cartoons and wish that the real world was that tidy. Things have to be tidy. Untidiness makes me cry and panic.
On the plus side, autism brings me a complete lack of regard for status, possessions, hidden agendas, point scoring and spite along with a deep, emotional, sensory connection to nature, animals and music. I have an insatiable passion for knowledge, understanding and ‘projects’ – I’m not called ‘the Oracle’ for nothing. I am utterly fascinated by people, which may cause me to stare a little too long at times, in a bid to learn from how they behave.
Fashion, makeup and handbags are a mystery to me. Ask me what I think of your dress and I will stare at you blankly for too long, hoping that something, anything, will pop into my head as a potential response and hoping that whatever it is doesn’t make you cry and that my brain has a chance to vet it before it spouts forth from my mouth.
For the most part I have two pairs of footwear: boots in winter and flip-flops in summer. Life is simple, yet complicated only when others are involved. It’s a little lonely at times but it has its compensations.
But, like many autistic women, you won’t see much of any of this. I hide much of my true self as I learned early on that ‘I’ am not deemed acceptable. And so, when you meet me, you will think – and possibly even say, which cuts me to the core, “You don’t look autistic to me”.
And I will smile and politely reply, because that is what the world says I need to do. They don’t call autism an ‘invisible’ condition for nothing. Some of us are just more invisible than others. Please know that inside is another person just waiting to go home and do a little flap. Just because you can’t see it, doesn’t mean it’s not there.
Next time you meet an autistic person, try to do it on their terms, just for a few minutes, because they may have been trying to do it on yours for a very long time.
Different; not less.16818 Views
Sarah Hendrickx is a writer, author, autism specialist and occasional standup comedian. She lives part-time in rural Portugal where she tries to make friends with geckos and grows broad beans. Her book about moving overseas, How to Leave the Country is available on Kindle/e-book. She blogs at www.bicyclesandbiscuits.com.