Oh, how time flies or as my Dad used to say, “Time doesn’t half tempus fugit.” I’ve been absent for a while dealing with ongoing health issues. However, I’m back with a sense of achievement.
The Kent Autistic Trust held their AGM this week. I attend one of their support groups and we were asked to talk about our experience of late diagnosis from a female perspective. Engaging my creativity, I decided to express myself in the way I work best, poetry, which I am sharing here.
Fifty-seven years and I grieve
Please turn back the clock
Give me my reprieve
By not listening you ruined my life
And here I am at the end of days
Sat on a rubbish heap for the lost
In realisation that it is too late
Gifts discarded to the four winds
Potential held by regret
Special interests wait to create
That life I dreamed was mine to get.
Dots placed carefully under your nose
Not an expert but I persevered
As ignorance misdiagnosed
Passing years embedding pain
No answers, no kind words
Etching patterns in a struggling brain
Age seven dreams were binned
Stigmatised for decades to come
The only sin was difference
With a burning desire
To impart knowing and learning
Great notions of fun
My middle name was ‘teacher’
You called me dumb
Possibilities waste away
Fade with the descending sun
As I remember a child full of life
Until they said ‘your behaviour is wrong’
And now heading towards those end of days
Anxiety and worthlessness bow on my stage
Tell me, where my future lies?
Tell me, who will care?
What do you see when you look at me?
A little girl lost in older age
Still bursting with creativity
Burning with ambition for that career
To set her free with peace of mind
Independence and security
But you shoehorned me into your beliefs
Crushing any sense of self esteem
Taking away the truth of me
Filling the vacuum with fear
Trapped still awaiting my chance
To be heard, to be seen, to be nurtured
And… to be loved
Instead I stand here fighting to survive
Alone, isolated when all flew away
And everyone died.
Opportunities gone beyond
No children, no family
No reason to be
And you gave me regrets
That will haunt my deathbed
When all I wanted
Was a reason to live
Purpose to share
A place to belong
Fifty-seven invisible years
Unseen unheard untapped potential
Wasted by judgement
Generations never given a chance
To truly dance in this world
Disappearing… my light fades
Gifts… buried in my grave
Unknown I’ll drift out to the stars
Forgotten in life
Forgotten when gone
The forgotten is who we are.
I finished with these words to the audience:
Diagnosed last year, age 57, as a High Functioning Asperger, I am one of the lost generations.
All I ever wanted was to teach in the arts. But UN-diagnosed Autism and UN-diagnosed Ehlers-Danlos Hypermobility (frequently concurrent with Autism) destroyed my life.
Now, I fear the future. I fear I will die having never used my creative gifts effectively. I fear I will die alone. But more than that I fear old age and being handled by people (nurses, carers) who do not understand Autism.
All I ask is that you listen to us, Autistic people. The horse’s mouth. We know better than anyone what we need in life. Many of us are teachers, indeed I am a qualified teacher.
We… are the educators.
Being at the AGM was a learning process all round and I was grateful to have the opportunity to tell a bit of my story. Helping people understand a little of this journey, often of decades towards assessment and diagnosis, hopefully shares the anguish many of us suffer throughout life.
One Trust member asked how I came to be diagnosed. Explaining my years of anxiety and depression due to masking and hypersensitivity, she remarked that Autism must cause that. I baffled her by saying, “No, in fact, Autism has no symptoms (quoting Kieran Rose, The Autistic Advocate.) Our anxiety and depression are the result of living with Neurotypicals who do not cater for us.” Hopefully I gave her some Autistic food for thought and was grateful she listened.
My poem came from the heart, not just mine, but of thousands of Autistic people who struggle everyday with such a complex brain wiring that just does not work optimally in this noisy, bright, smelly, complicated and often, judgemental NT world. But we’re here and we must find ways to gently inform those around us, of who we are.
The evening wound up with this film of amazing ladies telling their poignant stories.
Bye for now