Introduction
My whole life changed with five simple words
delivered casually by a relative at a party:
“You know you’re autistic, right?”
Initially, I rejected the idea.
I was 30 and my knowledge of autism was based on TV caricatures and digs
from people who suggested anyone behaving poorly
must be “on the spectrum”.
I thought autistic people were
I thought autistic people were math wizards who lacked empathy
and loved trains.
Of course, there’s no one way to be autistic,
and autism can present quite differently
in different people.
I’m a loudmouth creative with an overactive empathy chip
who can barely add two digits together.
And I couldn’t care less about trains.
Growing up
My story is more common than you’d think.
Growing up, my autistic meltdowns –
a totally involuntary response to emotional or physical overload,
were dismissed as attention seeking.
This was really confusing and scary as I came to believe
I was somehow acting out on purpose.
Add to that sensory sensitivities, making many lights, noises, smells,
textures and tastes overwhelming and painful,
as well as severe aversions to almost all food
and “spoilt brat” was added to the charge sheet.
My tendency to simply blurt out uncomfortable truths
was misinterpreted by others as manipulative.
It seemed that everything I did was misunderstood,
and so I began to over-explain myself,
a trait others found annoying.
By the time I was seven, my self-esteem began to plummet.
Masking
I tried to hide my difficulties and differences by disguising
my obsessive interests or choosing similar ones to the other girls,
like boybands, for example – in my case Hanson,
even if I never did marry Zac.
This is called masking.
And it’s something many autistic girls do
to try to blend in.
Unfortunately, the long-term effects of masking
can cause mental health issues and autistic burn-out,
an experience lots of autistic people can relate to,
where our difficulties are suddenly magnified
and it becomes impossible to participate in the world.
Autism is often presented as an illness to be cured,
when in fact it’s just a different way of experiencing the world.
While it comes with its downsides, it also has benefits.
Contrary to stereotypes,
autistic people can be creative, emotional and highly empathetic,
kind while saying exactly what we mean.
I care deeply about social justice.
I connect with animals.
I get untold joy from my intense interests.
And when my sensory sensitivities are focused on positive experiences
like music, it can be wonderful.
Around one in 100 people in the UK are thought to be autistic,
with three times as many boys as girls being diagnosed.
Like many areas of medical research, women are under-represented
in studies and many of the diagnostic criteria
for autism were developed with men in mind.
Over the past decade, our understanding of how autism
can manifest differently in girls and women
and also how our autistic behaviours can be interpreted differently
has changed.
But research still has a long way to go.
Until I was diagnosed as autistic,
I thought I was a broken, terrible person.
My diagnosis gave me a framework to explain my experience
to loved ones and the wider world.
Meeting other autistic people gave me permission to understand
and even begin to like myself.
Being autistic isn’t all roses and sunshine.
Like anything, it comes with its pros and cons.
Some people see autism as an illness,
whilst others call it a superpower.
To me, it’s neither.
It’s simply the blueprint for who I am,
and to cure me of my autism would be to cure me of myself.
My hope is that society comes to better understand
the autistic experience
so that future generations of women are able to be diagnosed
at an earlier age.
That way they can be given the support they need to thrive,
have self-confidence, and relate to the world on their own terms
as their unique, brilliant autistic selves.
