Hi there! Thanks for taking an interest in my latest fundraising project. This year, I will attempt my biggest physical challenge yet. I will be walking the Yorkshire Three Peaks (alongside a good friend) to raise money for the National Autistic Society.

We will climb Pen-y-Ghent, Whernside and Ingleborough, accomplishing an ascent of 1,532m and covering a marathon distance in a single day.

We estimate that it will take us around 14 hours. There may be much swearing, sneezing and wheezing, but there will be plenty of cake (especially as one of us will be celebrating a big birthday…it’s not me) and camaraderie.

This will be no easy feat for two knackered, middle-aged mums. We aim to overcome our allergies, arthritic knees, double dyspraxia, executive dysfunction and non-existent navigational know-how in order to raise £500+ to help autistic people with high support needs, their families and carers.

To provide you with more context, here’s a bit about why this cause is incredibly important to me:

In 2018, when he had just turned 4, my son was referred by his primary school for assessment for autism after his teachers noticed some differences in his social and emotional development. Three years later, in early 2021, he finally received an autism diagnosis. 

My husband and I immediately responded by reading and researching as much as we could on the subject: books about autism; documentaries about autism; books, films and podcasts made by people with autism…We wanted to know what it was and how we could be supportive parents. What did it mean for our son and his future? 

Here are a few things we discovered:

* If a person is autistic, it means that their brain works in a different way. 

* Not all autistic people consider themselves to be disabled by their autism. Some would argue that ableist prejudice plus allistic-centric systems disable autistic people more than autism does.

* Every autistic person is different. They have strengths and weaknesses - just as neurotypical people do. However, most autistic people have certain traits in common - to a greater or lesser extent. These usually include: social and communication differences; sensory perception differences; rigid, repetitive and / or ritualistic thoughts and behaviours; information processing differences; highly focused interests / hobbies; differences in the perception and processing of emotions.

* Autism and intellect are completely separate things. An autistic person may be considered learning disabled, produce test results indicative of a very low I.Q., or be thought to have superior intellectual ability. Most commonly, autistic people are somewhere in the middle of the IQ scale - average. Some neurotypical people are learning disabled; some are said to be geniuses; most are in the middle.

* It’s estimated that there are around 700,000 autistic adults and children in the UK alone. 

* Autistic children are 3 times more likely to be excluded from school than their neurotypical peers. 

* Only 1 in 6 diagnosed autistic adults in the UK has a full-time job (I suspect that there are many more undiagnosed autistic people in our workforce than we realise - especially those who were assigned female at birth). 

* In the past, it was assumed that autistic people were overwhelmingly men and boys, and only very rarely women and girls. This is wrong. There are many autistic women, girls and non-binary people.

During this period of intense study, it occurred to me - and my close family members - that I might also be autistic. We learnt that it is very common for autistic children to have at least one autistic parent - that autistic children tend to come from neurodivergent families. 

It was a long and rocky journey for me.

To cut a long, and traumatic story short, I was referred for assessment for autism by my GP in March 2021; I was eventually admitted for assessment almost two years later, and I received a diagnosis of autism in January 2023. 

My journey to diagnosis was traumatic partly because, when you’re 40, and you have spent all your life struggling - trying to figure out who you are and what you want - then you are suddenly struck by the realisation that what you THOUGHT you were and what you ACTUALLY are are two very different things, it feels incredibly disconcerting. 

All that time, I thought I was a weird, wonky duck; then I discovered that I’m actually a bloody marvellous squirrel! 

It was also traumatic because AFAB (assigned female at birth) autistic people, like me, often present (and / or are perceived) differently to AMAB (work it out) autistic people. We tend to be trickier for doctors to diagnose. I was told by one medical professional that I couldn’t be autistic because I’m married, a mother, in full-time employment, and because I can make eye contact. These are misconceptions about autistic people based on outdated, incorrect information.

Late-diagnosed, non-learning disabled autistics have often spent years learning and perfecting their survival strategies.

I learnt to carefully observe people around me; I practiced mimicking their gestures, expressions and intonation. I was no doubt aided in my communication development by the fact that my family is full of confident, eloquent, sometimes theatrical characters who share a love of language, stories and a knack for wordplay. However this didn’t prevent me from experiencing regular bouts of situational mutism and panic attacks whenever I felt pressure to speak in front of people.

I watched my favourite films on repeat and immersed myself in novels - looking to fictional characters to learn how to be a “normal” human (Pippy Longstocking and Sally Bowles were possibly not the best choices for my intended purpose!).

During lessons in school, I tended to remain silent - preferring to write down my thoughts and ideas - which kept me out of trouble most of the time. I flew low under the radar: a quiet, compliant (though my mother would disagree), yet super clumsy and forgetful geek girl.

There are LOADS of us. We are mostly undiagnosed - some still totally unaware of why they feel perpetually askew; constantly confused - prone to “freak outs” and mild disassociation.

How does my autism affect me now?

If you really want to know, read on, if not, skip to the end 😊:

Monotropism - I frequently get intensely interested in one topic, or task. This will take up a lot of my time an energy. For example, I periodically research different things that I’m interested in, such as folklore, genealogy, street art etc. Even if I’m not talking about my current interests, I will be thinking about them whenever I get the chance. One positive aspect of having this type of brain is that I rarely get bored and seldom feel lonely.

Inertia / Hyperfocus - linked to the above, I find it difficult to switch between tasks, or to stop doing the thing that I’ve started. I’m doing it right now! For example, if I start to plan a lesson, it can sometimes take me 5 or more hours to complete, because I get bogged down in details; I don’t feel able to stop if I perceive my work needs improvement. If I start cleaning the house, I end up doing nothing but cleaning for hours on end - sometimes perplexing and infuriating those around me. I am fully absorbed by, and focused on, completing a task, perfecting a creation, or finding out more information. I strongly relate to Lewis Caroll’s Alice! I have learnt to set myself reminders to eat, drink water and go to the toilet - otherwise, whilst wandering in Wonderland, I forget to meet my needs and I get ill.

Sensory sensitivities - I struggle with noise, especially lots of background noise, or different types of noise happening simultaneously. Unlike many people’s brains, mine can’t filter out inconsequential sound; it can’t prioritise, so I notice EVERY noise - including squeaky doors, electricity, traffic, weather, scraping chairs, animal sounds, rustling packets, footsteps, music…Hearing these sounds all at once feels torturous. I battle to hear and process what people are saying to me if I can also hear background noise. If I’m exposed to this type of environment for too long without a decent break, I suffer headaches and migraines. This is “fun” in classrooms (see some of us CAN use sarcasm).

Social interaction and communication - I prefer to see my friends one at a time, partly because I find group discussion overwhelming, difficult and often unfulfilling. I detest “small talk”, preferring to jump straight in to “deep”, analytical, often socially unacceptable (for many everyday contexts) explorations of love, death, sex, social issues, philosophy, ethics…This doesn’t mean that I can’t do social chit chat. I can and do do small talk. I just find it frustrating, pointless and utterly tedious.

My preferred communication style with friends is the alternating monologue - taking it in turns to talk at length about our thing. I loathe “banter” - partly because I struggle to follow it and have to fake smile / laugh when I have no clue what’s going on (until I’m finally able to the process the joke 5 minutes after everyone else).

Slow processing - it usually takes me longer than other people to do the same job (that’s not on my C.V.). To compensate for my slowness, I have learnt to spend less time sleeping, more hours working, and to create rigid routines and schedules, so that I “waste” as little time as possible. This is how I am able to manage a full-time job and busy home life. Yes I’m tired. No I can’t afford to go part-time.

I have barely touched on executive dysfunction and I haven’t even mentioned intolerance to medication, bottom-up processing, sleep, mental health issues, shutdown/ meltdown, rigid thinking and what happens when something unforeseen occurs (take a guess).

I’m still a super clumsy, forgetful geek, but now lists, notes, timers and apps are my friend. I have learnt ways to manage my differences so that, at least some of the time, I can appear as though I’ve got it all worked out.

If you’ve dedicated your entire life to studying duck behaviour, making yourself a duck costume, learning duck language - and you’ve done a really rather fabulous job of it - even the rest of the ducks come to believe that you’re just a slightly weird, wonky duck. 

“Look, you can swim can’t you?…You have a nice, duck mate AND you speak fluent duck don’t you?…OK, your bill looks like it might be superglued on, and your plumage appears to be made out of cardboard, sequins and glitter, but you still just about float!”

…If only they could see how fast my little squirrel legs had to pedal below the surface for years so as not to sink. 

THE END (ish):

What does being autistic mean for my son and his future? Well, I hope I can teach my spectacular squirrel boy to be proud of his differences, to enjoy climbing trees and to hibernate as nature intended - even if I also have to teach him how to stay afloat in duck school. I hope mostly that he will feel accepted and valued - not just for who he pretends to be when he’s masking under pressure. 🐿️ 

The National Autistic Society works to ‘transform lives, change attitudes, and create a society that works for autistic people’. I felt that their website was an island of logic and sense amidst an online ocean of misinformation, fake news and autism-related scaremongering. That’s why I decided to raise money for this organisation.

I hope to support my fellow squirrels and their families because not all of them can float alone. They need our help! 

Kind regards,

Charlie

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