24th March 2022 Blog

Celebrating Neurodiversity: ‘Learning to hug my brain’

Neurodiversity • Stigma •

To mark Neurodiversity Celebration Week, a McPin Lived Experience Researcher shares why the term is a win for them and the wider neurodivergent community

I have always felt my brain was ‘wired different’. Neurodiversity has given me a confident new language and perspective to move through life.

Neurodiversity is a relatively new word. It has made its way into public health discourse, but what does it actually mean?

What is neurodiversity?

Neurodiversity is not a scientific term, or a diagnosis. It is a political concept and a social movement. The word was coined by Australian sociologist Judy Singer when she put together the two words ‘neurological diversity’ to describe the never-ending variation of human minds and experiences.

Neurodiversity describes us all; how we are all wired differently - and that those differences should be appreciated as necessary for human thriving.

It’s a repose for people who experience, and engage, with the world in ways that do not fit the expectations of mainstream society; people who, as a result of not fitting in, have become diagnosed with various conditions such as dyslexia, dyspraxia, autism, Tourette’s, dyscalculia, attention deficit (fill the gap)...  

What is ‘strong’ – not what is ‘wrong’

Symptom lists for these conditions read like a long list of problems, outlining what is ‘wrong’ and totally missing what is ‘strong’ about that person. 

The neurodiversity movement has gained momentum because it celebrates differences as strengths. It has mobilised a proud platform for the marginalised to speak up, taking language and understanding beyond the medical world. As a result, it is shifting power in public discourse.

The embracing of neurodiversity in some NHS trusts is extremely interesting. Currently, this reads like a win for the neurodiversity movement. 

I watch with anticipation to see what happens to its political and emancipatory heart if it is further absorbed by medical communities and establishments.

A ‘eureka’ moment

I am neurodivergent. I was given the label of autism as an adult and although it surprised, it also defined me. A eureka moment. Different pieces of my life slot together like Tetris. 

I felt a little less lost, a little less odd. It gave me a satisfying, alternate explanation for the labels attributed to my child self:  difficult, fussy, sensitive, complainer.

I had naturally grown into my skin, but the labels hung round my neck on invisible display. Neurodiversity offered me a route to self-compassion.

My emotional sensitivity means I feel deeply for others and it motivates altruism. When things don’t seem fair or just, I feel compelled to express it. I pay attention to certain details which has helped me navigate risks and worrying means I can, in certain moments, plan well.

Autism was not well known when I was a kid, and very rarely diagnosed in girls. One explanation is autistic masking.

‘Masking’ and other coping mechanisms

 I copied others in the playground - what kids said, how they played. My attempt at fitting in and being accepted.

I seemed ‘normal’ to others, but underneath the surface there was a lot of confusion, anxiety and angst. I have since learnt masking is a work-around for the difficulties I had understanding and interpreting social cues. But this had a toll, and I would have major emotional meltdowns and act out at home, where I felt comfortable to explode all the energy.

Regulating emotions doesn’t come easy. I  was expelled from school and internalised my frustrations. I have juggled mental health problems and addictions for a long while. I find self-harm and hitting helps me calm down when I feel confused or unable to cope.

These behaviours may seem unusual but they are not uncommon amongst the autists I have known. Normality is a sliding scale.

The (long) path to getting the ‘right’ diagnosis

It was a long, long journey to get to where I am today. I have been in and out of mental health services since my teenage years. No diagnosis fit. The mental health struggles were, in my estimation, the overarching ‘ symptom’ of undiagnosed autism.

Unfortunately getting a formal diagnosis on the NHS can take up to two years so I chose to get a diagnosis privately.

A better prepared parent

Neurodivergence has a tendency to run in families, and this is true for me and my daughter. Because of my own experiences, I feel better prepared to recognise some of the differences that bother her.

For example, we are often late to school in the mornings because of my time blindness and her sensory differences, which make wearing clothes frustrating. This can heighten our anxiety but we have developed a mantra: ‘We march to the beat of our own drum’ and this helps to manage expectations.

Informing the school about my autism has aided their understanding and prepared them to make allowances. I am still on a steep learning curve with my daughter but when she has those almighty meltdowns, I have much empathy. It is a myth that autists lack empathy!

I value her big emotions and try not to squash them, even if they drive me round the bend sometimes. I know when we learn to channel them she is going to achieve amazing things. And I still have hope that I will too.

Learning to love my mind

I offer deep gratitude to Singer and other neurodiversity advocates.

Once upon a time I wished for a  brain transplant, now I give my brain and mind hugs.

I hope other neurodivergent people who are unsatisfied can find a way to appreciate their minds also. Together we are stronger.

Read our blog about how to use neuro ‘hacks’ to make meetings accessible for all