Written by James Sheard
Volunteer Coordinator at Total Voice
Cambridgeshire and Peterborough
How I discovered women on the autistic spectrum was actually a thing.
Growing up in eighties and nineties autism in general wasn’t really a thing. At least not in my life.
I didn’t really hear it is a word till I was almost an adult, and my mother having retrained as a primary school teacher added the role of SEN Coordinator.
“I sometimes wonder if all men are autistic” she’d say. “What even all the men in our family?” I’d reply, “especially all the men in our family” she’d immediately respond.
Now you do have to take everything my mother says with a pinch of salt. And when I say a pinch of salt, I actually mean enough salt to generously cover a large portion of fish and chips with a little spare to throw over your shoulder for good luck.
She wouldn’t have dreamed of actually suggesting that all the boy kids in her school should be diagnosed as being on the spectrum.
However this did probably contribute to two factors that didn’t help my understanding of the condition.
1 – It convinced me that half a dozen traits most associated with adolescent or socially awkward men meant they probably had autism.
2 – It took me till I was 30 to actually knowingly recognise someone as both female and being on the autistic spectrum.
The traits I believed were indicators of autism included:
A – Playing lots of computer games.
B – Not spending much time outside.
C – Not spending lots of time with friends.
D – Not going to loads of parties.
E – Not having a girlfriend.
F – Not wanting a girlfriend.
G – Having controversial political opinions.
H – Not being constantly interested in conversation or gossip.
Of course, in truth most of these were just things that the obsessively socially ‘on point’ female half of my family (my mother, my sisters, my grandmother), found irritating about the not quite as bothered by social rules, male half of my family (me, my Dad, my Mum’s brother etc.).
It is also quite apparent that many of these factors could apply to any 14-25 year old, going through puberty. Add the fact that at least 50 percent could at that stage of life, have applied to me plus how many of my peers those factors also were true for, and you could see how self-reinforcing the idea that autism was just ‘maleness’ was.
My views started to change slightly when I moved into social care. I began to realise to those who were genuinely on the spectrum that unlike many of the traits above, autism was a permanent and life-long challenge. Where a change in environment or routine wasn’t simply an inconvenience but something that could cause an individual emotional and physical stress.
However nearly all the service users on the spectrum who I worked with were males with profound learning and physical disabilities. This meant with most of them their other care needs were the priority, and because of their limited capacity, it was hard to properly discuss how their autism affected them. Whilst of course reinforcing the male dominated stereotype of the condition.
In the four locations I worked, I can only remember one female service user who people talked of as having autism, and as we were in different parts of the service I spent very little time working with them.
In 2014 I became coordinator of the Speak Out Council and therefore responsible for supporting the Speak Up Spectrum leader to run her forum for people on the spectrum. Through the group I also met Rachel.
Rachel’s story is told beautifully and eloquently in ‘A Girl Like Till’y which I highly recommend to all who wish to understand better what growing up with autism could be like. I will also leave it to our Speak Up Spectrum Leader to tell her own story, as she does it far better than I will be able to.
However it was a privilege to facilitate the group with both, and to discuss autism from a female perspective, with two women I could converse with at an academic level about how well the world supported and understood their condition.
When I thought back to the people with profound learning disabilities I had work with, their perspective helped me understand how to break apart the learning disability from the autistic spectrum diagnosis. And why it was important to separate the two.
They also of course helped me to see how stupid it would be to have ever seen autism as just another word for a certain traits associated with men.
And finally why it is so important that women on the spectrum, share their stories with the world.
To find out more about Total Voice and the work they do please see here.