I can relate to my autistic friends and family and that should sadden you.
Now, let me explain why.
When I was first introduced to the phenom that is Kieran Rose, aka The Autistic Advocate I had only been working as the staff writer for an Autism charity for a short time.
I’m embarrassed to admit that the only things I knew about autism – or in fact autistic people – came from second hand sources at best, and at worst, Hollywood. Starting the job then, was a steep learning curve, but I love to learn. And I love people. So I knew I would also love the role.
I began learning about the history of autism and the services we provide as an organisation. I heard stories from ‘experts’ and practitioners; I watched Ted Talks. All the Ted Talks.
I read research papers and spoke to children, young people and adults accessing the care and education services the not-for-profit I am employed by offers. I listened to the people who have served here for decades about how it once was and how it is now.
Yet it remained foreign.
An entity.
Something over there, while I sat typing over here.
I’ve since learned that autism isn’t a quantifiable thing; it can’t be separated from the autistic person so that perhaps explains why a breakfast meeting in a small County Durham hotel would go on to change things when it came to me relating to and allying myself with, the wonderful neurodivergent people in my world.
Sitting opposite Kieran, a husband, dad, prolific writer, educator and speaker my plan to ask him questions about topics I had barely scratched the surface of, unfolded into something entirely different.
He began bringing the history of the neurodiversity movement to life.
He told me not about facts and figures but about people and struggles.
He captivated me with successes and examples of brilliance juxtaposed against a backdrop of gaslighting, abysmal diagnosis rates, misunderstood and outdated ‘symptoms’ and he almost broke my heart retelling the story of a personal friend who was accused of Munchausen Syndrome by proxy because she maintained an insistence that her child should be diagnosed.
I found myself nodding, repeating the words, ‘I understand,’ agreeing and affirming that I knew in my core the fight that he was articulating for help, information, understanding and equity was one that I could relate to. But not because I am autistic.
And this is why you should be sad.
No, this is why you should be stirred to anger.
For more than a decade I had to navigate the slings and arrows of life with what’s euphemistically called an invisible illness. Eventually, and by that I mean multiple surgical procedures, a brush with death and a dependency on opiate painkillers later, I would learn that the silent thing lurking within was a condition called endometriosis.
Despite it affecting around 1 in 10 women of reproductive age in the UK (that’s 10 x more people than the widely assumed outdated stats suggest are autistic) it remains an unfathomable enigma to large swathes of the medical community.
I was told over the years that I must have a low pain threshold. It couldn’t be that my pain was extraordinary.
Despite well marked out diagnostic timelines it took 12 years for surgeons to finally find the nasty little patches of endo causing my organs to fuse together.
An unspeakable taboo, at times I didn’t have the language and the vocabulary to express how I was feeling, and worse, in the throes of a flare up I couldn’t advocate for myself but needed to.
I woke up once to discover I had a hormone implant that I couldn’t remember consenting to due to pain relief. My existence – and quality of life – really was in the hands of others.
It almost killed my nearest and dearest as they watched me exist in a world that simply isn’t made for people who have to endure this thing. (Try being a female journalist in a largely male news editing team who needs to be excused every other day because of excess bleeding! Yep. Talk about setting feminism back a decade or two.)
I can admit now that I have spent an inordinate amount of time as a grown ass woman feeling like I had let my family down, that I was a rubbish employee and that I was undeserving of anything more than the coping strategies of life that I was then well-versed in. Not helped of course by medical notes that say things like, ‘seeking opiate stimulation’ or staff suggesting I would happier at home with my family during hospital stays.
And so that day in Stanley as my friend told me about his autistic life, his late diagnosis, the way he perceives his being impacts his family; the system that simply doesn’t benefit the people in it or the many hours of campaigning needed to bring legislative and diagnostic change I could relate to every word.
In front of me wasn’t a diagnosis. It was a person.
In front of me wasn’t a puzzle to be solved. It was a father.
In front of me wasn’t the subject of an expert’s analysis. It was a little boy who became a man and the telling of his story would be framed entirely by negative words.
So when I tell you that I can relate to my autistic friends and family who don’t feel listened to, who have to constantly fight to be seen and heard, who have to mask just to get through every. Single. Day. Then you too should be sad because – and let me say this clearly and loudly – AUTISM IS NOT A SICKNESS.
I shouldn’t be able to nod in agreement that life is unfair, unjust, full of inequity and geared up to benefit others.
I shouldn’t see myself – someone who battled an unwanted pathology – in the lives of those who simply process the world differently, due to their shared neurology.
Now I will say this: life is hard at times for us all. Diagnosis of something or not. We can share that for sure. But the thing that should be our primary point of connection is our fellow humanity. It should be that we both bleed red. Or that we both get caught up in the waves of grief that hit us all from time to time. Or that we all need a community (in whatever form that takes) to edify and celebrate with us, and to collectively help us navigate our challenge.
Our point of connection should not be that life is crap for both of us.
This sentiment arose again when I wept with some of my black brothers and sisters in the past weeks as they told me stories I had shamefully never deigned to ask about before.
A prominent black, Christian speaker from America even noted that he presumed that women would understand their and his struggle because we too have been systemically oppressed.
He’s not wrong. But I wish he was.
If our connectedness and our ability to relate to others requires us both walking in the shoes of suffering then the world that we inhabit is a sad one indeed.
I don’t believe that, however.
I believe we can change the narrative.
We can celebrate and include that which is different.
We can seek to listen and understand, not just speak about and to.
We can stand together as equals – as humans – as kin.
We can place value on each other ‘just because’ not because of anything.
We can do better.
And just one more thing: I do hope I can always relate to my autistic friend. But because we share an expectant hope and a legacy of change borne of friendship, not because we’ve been forged through the comradery of war.
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