It’s Neurodiversity celebration week and, with it being estimated that 1 in 7 people in the UK are neurodiverse, we chatted with two Cumbrian’s about what it’s like living with neurodiversity in the county.
What does neurodiversity mean?
Neurodiversity refers to the different ways the brain can work and interpret information. It highlights that people think about things differently, have different interests and motivations, and are naturally better at some things and poorer at others.
Examples of this include Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), both dyslexia and hyperlexia, dyscalculia, Epilepsy and Tourettes and Tic disorder.
Most people in society are neurotypical, meaning that the brain functions and processes information in the way society expects.
Terminology:
Autism: Is a lifelong developmental disability which affects how people communicate and interact with the world.
Masking: To ‘mask’ or to ‘camouflage’ means to hide or disguise parts of oneself in order to better fit in with those around you.
Neurotypical: The brain functions and processes information in the way society expects.
Neurodiversity: refers to the different ways the brain can work and interpret information. It highlights that people think about things differently, have different interests and motivations, and are naturally better at some things and poorer at others.
Marisa’s story
A headshot of Marisa looking out to the world on the right with a forest background. Photo credit: Marisa Crane.
Marisa Crane is a 26-year-old artist based in South Cumbria who was diagnosed as Autistic in 2021. In this frank and honest account Marisa tells their story on what it's really like to live in Cumbria with Autism Spectum Disorder (ASD).
There are 5,353 adults in Cumbria who are Autistic according to Cumbria County Council.
What was your experience of being diagnosed with Autism?
Marisa had been struggling with their mental health for years but after a breakdown in 2020 it prompted them to start researching extensively what was really making them feel the way they did.
Wider societal attitudes to autism meant that Marisa was misinformed about what autism is.
However, after looking into the symptoms, a lot of what Marisa was experiencing related to what Autism looked like in women: “Everything fell into place and made sense” for Marisa.
With that in mind Marisa arranged an appointment with the GP who specialises in mental health but she didn’t expect what was to come next: “She was adamant that I wasn't Autistic because it would have been picked up in childhood.”
It left Marisa feeling stressed especially as it was over the phone, a form of communication that’s difficult for a lot autistic people and resulted in what Marisa knows now to be an Autistic meltdown and the GP did nothing.
In November 2022, National Autistic Society launched ‘Now I Know’, a campaign highlighting the experiences
of late-diagnosed autistic women and non-binary people from across the country. Photo credit: autism.org.uk
But Marisa didn’t stop there: “The only reason I did get on the list for a diagnosis is because of a chance encounter. I had met a mental health nurse at a yoga class who was researching for a PhD in Autism.”
The nurse knew that Marisa was autistic after the first time they met six months ago and encouraged Marisa to get on the waiting list:
“She gave me the powerful advice of contacting the GP again and stating the line ‘I have the right to choose’ and under NHS rules they cannot refuse you a test.”
Marisa waited nearly two years to get a formal diagnosis and during that period had to fill out countless forms that Marisa found highly confusing:
“I could see what a neurotypical person assessing my answers would see as the ‘most Autistic' answer, and I could see what I might answer, but after years of masking my Autistic traits, is that the answer I really thought or something I’d been conditioned into?”
Finally after all the form filling Marisa got their assessment. The team were understanding and acknowledged the gender bias in Autism and a day after their meeting Marisa was officially diagnosed Autistic and had this reflection to add: “If I hadn't had the strength to advocate for myself it is very scary to think that I would be undiagnosed still, and it worries me where I would have been with my mental health without this understanding about myself.”
A collage piece of art Marisa created. A lot of Marisa’s artwork focuses on
identity especially after diagnosis. Photo credit: Marisa Crane.
Were you offered any support after diagnosis in Cumbria and do you think there’s enough support in place in Cumbria for someone like yourself?
A month after diagnosis Marisa received a follow up call and an official write up of their diagnosis but as far as support goes after there was nothing: “There's not enough support in Cumbria for adults particularly women, who have just been diagnosed.”
Marisa described how being left in the dark by services made them feel isolated: “You've just received this life changing medical diagnosis, a lifelong diagnosis too, and you're out there on your own navigating this new landscape.”
It was already difficult enough to get a diagnosis for Marisa and it left them with more questions than answers: “You're faced with new challenges, like when you have to fill in a diversity form for a job application: do you define yourself as disabled or not?”
Regarding workplace difficulties Marisa added: “When you’re at work and disclose your access needs you don’t even know what you might need because you've been masking for so long.”
Marisa, like many other Autistic people, is afraid of the stigma that surrounds the illness and telling the world about their true self:
“It feels like this shiny, precious but delicate thing, like a butterfly cupped in your hands, that you want to show other people but you're afraid what they will do with it when you do.”
Photo credit: Pinterest
Unfortunately due to the stigma surrounding Autism, Marisa has experienced many terrible reactions from others when they’ve revealed this part of their identity and finds the unpredictability of these reactions scary.
Marisa expressed that having support would’ve given them comfort to help navigate these struggles. Does living in a place like Cumbria alleviate symptoms of your Autism?
Nature for Marisa is a great relief for their Autism and Cumbria’s green and open spaces offer somewhere they can have alone time and be stimulated in a quiet way.
However being Autistic in such a rural place like Cumbria according to Marisa has a lot of downsides with transport being one: “It’s impossible to get anywhere in the county if you don’t drive”.
The wider issue in Cumbria with the lack of transport and costs attributed to travelling means that accessing these positively stimulating environments is challenging.
It is even more challenging as an Autistic person with the sensory difficulties that come when facing public transport.
The BBC documentary, Inside Our Autistic Minds highlighted Anton’s story on how being autistic can impact
how able you are to travel to work and leisure activities. Photo credit: BBC
Although Marisa is now learning to drive, she remarks that the processes of coordination, reaction times and rules that come with it are all things that "basically doesn’t make sense to my brain".
Marisa also explains that in a place like Cumbria there is no support network: “If you were living somewhere like a city there would be spaces and groups dedicated to people like myself."
"By extension to this, Cumbria can be a backwards place to anyone who is ‘different’. It is easier to express yourself in other places, and I’m not the only one who says this.”
Marisa described that this isn’t just unique to people being neurodivergent in the country and that for anyone that is ‘alternative’ to the societal norms e.g. queer:
“It's very hard to find a community of people like yourself where you are free to be you without backlash.”
Marisa uses found objects in their artwork and they all hold memories of their past lives
which have played out alongside Marisa. Artwork credit: Marisa Crane
What would you like people to understand about Autism and how can people better support yourself and others with ASD?
The attitudes Marisa described that people have towards Autistic people in Cumbria are revealing but it offers a chance of reflection to ask what people can do to support Autistic people in their local community.
In Marisa’s education experience she’s shocked at how little teachers know about Autism and the little they did know was largely misinformation.
Clearly more needs to be done in the education system so that young people don’t go undiagnosed for as long as Marisa did.
Marisa wants to expel the common myth that there is ‘severe’ and ‘mild’ autism and that the best support someone could give someone who is Autistic is to simply just let them be Autistic.
And you may be asking yourself what does that look like well in Marisa eyes:
“It shouldn't be seen as a regression if our traits are clearly visible to you, like if we are stimming publicly or wearing ear defenders.”
The BBC documentary, Inside Our Autistic Minds highlighted Ethan’s story on how sensory overload means
he struggles to hear sounds and noises whilst making his regular trip to school. Photo credit: BBC
The idea that Autistic people should conform to a neurotypical world for someone like Marisa is actually very harmful:
“We shouldn't be praised when we hide our traits, looking more ‘normal’ isn't going to cure us, and if it makes you feel uncomfortable to see our public Autistic-ness you need to ask yourself why that is; it isn't our job to make neurotypicals feel more comfortable.”
Autistic people often use various aids to help them cope whilst out in public.
Photo credit: Beth Wilson
For Marisa, open dialogue surrounding Autism is key to being supported and understood: “Actually ask what we need and how we experience the world, rather than jumping in with your own, often misinformed, opinion about what Autism is.”
Marisa pleaded: “never be that person who says 'Oh but you don't look Autistic'” Autism is often undiagnosed in women and Marisa want’s people to understand the traits which commonly occur within Autistic women are often different and more subtle than the traits in men.
Women are four times more likely to be misdiagnosed than men for Autism. Marisa concluded that those in positions of power who are likely to encounter neurodivergent people, for example teachers, need to listen and educate themselves on Autism.
Another collage piece Marisa produced which concerns the themes their artwork explores
like Memory, identity and space. Artwork Credit: Marisa Crane
It’s not Marisa’s job to educate people on what Autism is and we hope that you as the reader go on to read and learn more, particularly about how Autism presents in women.
Consider how you can actively accommodate for Autistic people. There is a powerful documentary you could watch on BBC iPlayer on being Autistic and a woman. Marisa’s story is one of resilience with the difficulty in getting diagnosed, defiance to a neurotypical world and a plea for more support to be given to Autistic people in Cumbria as Autistic people shouldn’t be left with no support post-diagnoses.
We thank Marisa for being so open and honest about their experience and we hope that it provides you with comfort if you're Autistic and reading this to know that your lived experience is valid.
Marisa is a talented multidisciplinary artist and you can find them on Instagram: @marisacraneartist
Comentários