Do we all deserve to live well?
That's what we're really asking for in seeking neurodivergent acceptance; the right to live well.
Dear neurokin,
I recently took part in a local community panel discussion about making sense of neurodiversity. It was part of a series called Livewell; a safe space for people to explore complex topics about what it takes to live well.
As always, I was delighted to be invited to take part and then ridiculously (autistically?) nervous when it came to the actual speaking part.
I prepared a couple of pages of notes that I never again referred to, some parts of what I’d scripted were never even mentioned. Of course, those pieces of paper gave me some comfort.
Whilst I started out the panel discussion feeling a bit nervous, I noticed something major had shifted in me by the end of it.
I had a fire in my belly about what we’re really asking for in seeking acceptance of being neurodivergent.
On my panel tonight..
I was sitting between two women on the panel who have been hugely influential in giving my family a language of understanding.
Not a label.
An explanation of what neurodiversity meant for each of us.
To the left of me was the Inclusion lead from my children’s junior school. Her name is Sam and her title of INCCO (Inclusion Co-Ordinator) is no accident. Deliberately choosing her function to be titled Inclusion and not Special Education Needs is what makes her stand apart from so many within the education system.
Everything she put in place for our eldest child, as he anxiously explored what it might mean for him to autistic, had him and his needs at the centre of it.
He played chess with the deputy head, Mr Ringland, every lunchtime, because that was where he felt safest. Mr Ringland cultivated his love of The Simpsons and Geo Politics.
Every time the Local Authority refused to provide our autistic child funding for the support he needed, to navigate his huge mainstream Primary school and soon Secondary education settings, Sam picked me up ‘off the floor’. Often I was a sobbing wreck. She encouraged and supported me to go on. To continue to fight for the support he so obviously needed.
Sadly, Sam and Mr Ringland have both left Education now. There’s little time or resource for children’s needs to be placed at the centre of decisions made in education.
I suspect they both grew weary of these realities and the rigidity of an education system that gate keeping politicians refuse to adapt to modern living.
To the right of me was Dr Kat. We first met Dr Kat, Clinical Physiologist, on a Zoom call during the first COVID lockdown. Gently she helped us to understand what was causing our child such distress that he was regularly banging his head with his hands, biting his own hand, struggling with intrusive thoughts and prone to running away in crowded spaces.
I feel lucky that we had access to these two professionals in education and health systems. Without them, our child would not have a deep knowledge of or be accepting of his Autism. He would not be thriving, as he is now, in secondary education.
Because, we were lucky and these people are sadly rare finds within our education and health systems.
How neurodivergent identification helps us to live well
Whilst I assume most of you reading this are exploring your own neurodivergent identify, some of you may be reading this to support family or a friend who is neurodivergent.
Maybe you’re an advocate or ally for us neurokin? If so, thank you.
I want to briefly emphasise here how life changing it is to have access to information that helps you to understand and adapt to your neurological difference:
What it is that makes you different in how
you experience the world through your senses
you communicate and engage with others
How this affects your nervous system
what makes you energetically/emotionally dysregulated
understanding what helps you to regulate your energy and emotions
understanding that pushing beyond your limits can cause repeated burnout
How neurodivergence may be linked to physical conditions that affect you
chronic fatigue
hyper mobility
chronic pain
gastrointestinal issues
autoimmune disesases
dysautonomia (POTS)
hormone related conditions (PMDD) (PCOS)
But, are too many people being diagnosed??
Dr Kat gave an excellent explanation of neurodiversity and the paradigm shift away from pathological to neurodiversity model.
We then had a lively panel discussion about stigma and challenges of living as a neurodivergent human.
Then it was opened up to questions from the audience.
We were repeatedly asked if too many people are being diagnosed and it started to rile me.
When the microphone was passed to me I let the fire in my belly do the talking:
‘I want to emphasise that we’re forced into arduous processes to get a medical diagnosis of our neurodivergence in order to access any support.
We’re here tonight to explore what it takes to live well and so I’d like you to consider this; do we all deserve to live well?’
Or do we only deserve to live well if it won’t require investment in us or adaptions to rigid systems?
As we are in yet another month of Autism Acceptance I think this is the question we should be asking:
Do we all have the right to live well?
To have adaptions made to the places we learn and work so that these environments do not damage our health.
To have access to healthcare to holistically understand the co-occurring health conditions that affect the way our minds and bodies operate.
To be recognised as disabled by our health conditions.
To have the right to adapt our lives to our neurodivergent biorhythms in order to live well.
Or should we all be forced into complying with the standard issue model of what is deemed to be a majority human?
Of course, you know my answer to that!
Here’s some other questions I have about why there’s so much backlash about the increase in neurodivergent identification and diagnosis:
Why do we need to repeatedly justify that we all deserve to live well? (yes, I know cost… but what else is it really about?)
Why are those of us who need adjustments and support to live well stigmatised and villainised?
Will there ever be a tipping point where we do actually live by a neurodiversity paradigm that simply accepts, allows and adapts for us all being different?
What if there are more neurodivergent humans than is comfortable to justify the way that systems are currently designed?
One final thought to leave you with:
What if there are more curious and questioning neurodivergent humans than is comfortable for a world built on compliance and obedience to cope with?
Thanks for reading.
We all deserve to live well.
Andrea x
P.s As ever, my favourite bit in all of this is hearing your thoughts.
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