When I was studying at uni in 2001, I met a fellow student and built a strong friendship-online.
We were both studying a degree in Social Science and shared many values and beliefs around social justice and life in general.
Like me, she had a larger than life personality and we hit it off instantly.
We spent many assigned study hours laughing at all things unrelated to study and after some time, developed a very close friendship where we shared the most painful and intimate details of our lives.
She was Chinese.
Her father was a well respected cardiothoracic surgeon and well, I didn’t know too much else about her Mother and siblings, other than my friend’s crippling disappointment in them all.
She had left home very young and branched out into the world on her own.
Yet she required much support to do that, and had none.
She managed to source many friends and acquaintances online who were skilled in certain areas and would help her with basic tasks around the home, etc.
She also relied on charities a great deal.
I admired her spirit, but having an analytical mind, I craved more information.
Why would someone leave their family, never to return?
What was it that was so bad?
It made no sense to me.
As our friendship progressed and months turned into years, I asked.
Yet the only reasons she gave were around her family being ‘unevolved’.
I didn’t understand.
From time to time, she would see her family in her community. They’d beg for her return.
They’d offer her money.
And she was adamant that she would not return; nor did she feel a longing to be with them or a sense of missing them.
She said they didn’t understand her; that they had expectations of her that she didn’t feel she could meet.
I made the assumption that meant she didn’t want to study Medicine like her father, which was something she had mentioned before.
We let the conversation go.
She was animated and possessed a wonderful sense of humour.
She was intelligent and people smart.
Yet she wasn’t.
I was baffled by her ability to read others, to feel into their energy and know whether a person ‘felt’ safe or not, but her inability to protect herself from their dishonesty and sinister intentions.
I was baffled because I was the same.
What was it about us?
How could we ‘know’ but ‘not know’?
We shared our lives, the trials and tribulations.
She told me how awful she was at cooking and self care and I shared how I was pedantic about presenting a certain way and how exhausting that was.
This, we had differences in.
She shared that she struggled to shower, change her sheets, eat from a variety of foods.
I shared that I showered obsessively, particularly throughout the days where I was in the midst of a horrific eating disorder, that showering was a form of OCD for me, and that food was very, very difficult.
She struggled to eat vegetables and fruit.
I didn’t. But I didn’t like the feeling of food in my body. At all.
So many similarities, yet differences in our similarities.
She would travel, staying in hostels and backpacking lodges,
And I had never travelled, due to intense anxiety around leaving my comfort zone.
She would email from her travels, telling me all kinds of stories about people she had encountered, things she had witnessed and illnesses she contended with along the way.
I too, was diagnosed with chronic conditions around the same time.
Both gastrointestinal in nature, along with fatigue.
And then in 2008 after a long seven years of connection, laughter and sharing our lives and all the ups and downs, we decided to meet in person.
We arranged for her to catch the train to my hometown and I would collect her.
I was so excited, as was she.
Oh the talking we’d do.
The laughing we’d do.
Just like the past seven years online.
She knew me better than anyone.
The train pulled in.
I stood on the platform waiting with excitement.
And there she was!
I walked over and outstretched my arms for a hug, and she made it clear both physically and energetically that she didn’t like to be touched.
“Okay, no problem.” I thought.
We got in the car and as I talked, I concluded that she must have been painfully shy.
Not a word.
Smiles, gestures and looking down mostly.
“She’ll warm up” I thought.
The atmosphere was awkward.
Due to her shyness that carried on for over a week, I no longer knew how to bring her out of her shell.
I tried jokes, which she smiled at subtly.
I tried conversation, which she would respond to with “Mmm” and a smile or a furrowed brow.
Yet, amongst the silence, there was still a linger of connection.
We agreed to try each other’s cooking.
I made foods that I knew would help her illness and she taught me how to make her version of spaghetti with chicken nuggets and tomato sauce.
I worried the entire time that I was too much.
That my energy was too loud, that I talked and laughed too much.
Yet, over time, I was able to relax into whatever was going on and just accept.
I was, however, extremely intimidated. She was a profoundly intelligent woman.
“She’s analysing me and I’m not good enough” I worried.
And, there was another difference between us..
I was highly anxious. A worrier.
She was relaxed, easy going.
The larger world issues stressed her out.
What colour cardigan I should wear stressed me out.
And so there we were..
Me, pretending not to be awkward.
And her, completely owning her awkwardness.
I introduced her to my friends.
She smiled awkwardly yet didn’t speak.
I was so perplexed.
How could somebody I know to be larger than life, with so much to say and so many thoughts be so silent?
It made no sense.
My friends would ask how we met, how did we become friends as we were so different?
And I would assure them that actually, we were really alike in so many ways.
I felt I had met a totally different person.
When she returned home, I was even more perplexed.
The conversation carried on between us online as per normal.
She was larger than life, laughing and joking, reminiscing about moments I had thought only I had enjoyed.
She reminded me of so many things.
Time and time again over the years.
Songs I had made up, things I had said and done in my silly moments to break the ice, moments that had made her laugh.
It appeared she was totally present to them and yet, I had believed her to be longing to be somewhere else, based on what I believed was her body language.
We met again in person years later.
By then, I had convinced myself that I had imagined it all.
And yet, the same thing happened again.
But the connection remained the same online.
She would travel, send me books and letters and inspiring bits and pieces.
She was so tuned into who I was as a person, that I often felt she knew me better than I knew myself.
She challenged me.
And I remained absolutely perplexed by her.
Her outsides did not match her insides.
Her behaviour was so incongruent with who I had come to learn she was as a person; inside.
As the years passed, we lost touch.
She went on to live overseas and to fight for social justice causes.
She put everything she had into fighting for our most vulnerable.
And it’s only today that it all makes perfect sense to me.
I was an undiagnosed autistic woman,
And so was she.
She was a non speaking autistic woman.
A non speaking autistic woman who had higher care needs in some areas of her daily life in comparison to other areas.
Just like me.
Just like all autistic people.
She kicked serious arse academically. And she was always, always helping me with my study.
But she required support with showering, changing her clothes, eating certain foods and speaking, just to name a few.
I was hyperverbal-never shut up, still don’t.
But I required support with emotional regulation, relationships, sensory integration and self care, just to name a few.
This is one of the most profound struggles we, as a society face today.
The assumptions and judgements we conclude about others when their behaviour presents as diverse in nature.
When people move their bodies in certain ways, do not speak or speak minimally, when they stim, when they are different from us,
Or different to how we expect they should be,
We make decisions, often final conclusions about their ability, their capacity, their intelligence, their needs, their wants, their thoughts, their hopes and dreams.
I now understand.
I now understand the expectations her family had, that she felt she was unable to meet.
The same expectations she felt she could not meet for many people, organisations, places and things.
And I relate.
The autistic experience is largely internalised for those of us who are labelled as ‘high functioning’.
Yet we share many of the same challenges as our autistic siblings such as my friend, with variations in intensity and colour.
I often think about her, my wonderful friend.
An entire world of personality, loud and proud, generous, kind and gracious inside.
And totally misunderstood and undermined due to her autistic expression-her behaviour.
Sometimes I read about her, the wonderful things she is doing across the ocean for vulnerable people.
Her incredible academic writing, her research making so much difference and change in our world.
We autistics are drawn to one another, like magnets.
Birds of a feather.
Don’t discount it within your family unit, or in your friendship circles.
We are all different, yet share many of the same characteristics.
Pay close attention to the beauty, the unexpressed is always within, when we stop focusing on the behaviour and tune into the internalised human experience.