Char Writes ND

I still don’t know what I’m doing on social media. Being a person online is a very *not natural and cringe* experience for me, as it feels not very ‘me.’ I’ve always struggled with ‘putting myself out there,’ and being both received and perceived.

I struggle to keep a ‘presence’ and create endless streams of ‘content’ and various other required things.

So.

I just wanna process my silly little feelings, make silly little metaphors and write my silly little words, okay? ❤️
Here’s an amalgam of all 3 in a silly little story about becoming a librarian.

Autistic community can be fractured and imperfect.
Sometimes exclusionary, sometimes sticky, sometimes cliquey; but oftentimes hopeful, helpful and affirming.
It can be a place for people who often never had one.
I've found so much love here. I've met people I've come to appreciate and understand through a phone, just as much as if they were sat next to me and I hope one day, they can be.) l've learned so much and healed so much through knowing others like me, and others not like me.

Community is hard. We put tons of different people together, unified by one (or a couple) of things, and expect it to work flawlessly on its own, despite all of the things these people *aren't* unified by. Lived experience, identities, personal traumas, triggers, interests, geographical locations, upbringings, opinions etc. We are the same, but so very different.

We all need to work on community, for community to work for us all.

Community = Working Together
Community = Care
Community = Equity
Community = Friendship
Community = Safety.

Community questions if you want to answer -
What’s your experience of Autistic community? Who is building the type of community you want to exist within? Who are you thankful for in your community? ❤️

# prompt courtesy of

Giving thanks to some of the people who’ve made me feel like I have community here - whether it’s been personal support, friendly chats, or seeing the type of community we need, reflected or being built in their work - these people have made a little corner of the internet feel like home.



abdullah


and.fries


meg.raby
narratives
brained










analyst








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Autistic Pride

I have a strained relationship with ‘pride.’

I struggled for a long time to feel proud of myself.
I’d made too many mistakes, taken on the shame of too many failures, turned inwards the barbed edges of too many judgements, and had been too many people that I didn’t want to be, to ever feel ‘proud.’

But there are things I’m proud of now. It hasn’t been easy.
Most days I feel proud of who I am, what I believe in, and how I move through the world.
I feel proud of the things I’v overcome.
The family I've made.
All of my accomplishments - which are sometimes simply getting through each day - I've got through many days my nervous system told me I never would.
I'm proud of surviving.
Of containing beautiful, complex, painful multitudes.

There may be stories today - and other days - about the magnificence of our brains, our ways of being, our strengths. For it's true - there are plenty of magnificent things in all of those.
But I don't feel magnificent right now. I feel raw and all-too human. Inescapably mortal.
I feel tired.

But I feel proud.
Because exhausted, tender humanity is worth celebrating too. I don't know my Autism without it.

It's ok if you don't feel magnificent either. You don't need to feel magnificent to be proud.

Prompt by Lived Experience Educator

(And yeah, I know I need to take new photos of myself, but also, ugh 😂)

Did anyone else rationalise parts of their unidentified Autism with having some kind of magic? 🤔

I don’t really know what quantifies ‘magic.’ Maybe it’s subjective. Maybe I am magic because I felt so. Maybe magic *is* intuition and picking up on the unseen. Maybe it’s something else entirely. Maybe I just read Matilda too much in my formative years 😅😂?

A letter to your parents:

( / A letter to *a* parent - but not *my* parent.)

I’m fortunate that my family, the family that raised me, accept me wholly, in a really helpful way. They have their problems - we all have our own traumas, and traumas that interweave around each other - but they understand as much as I could ever ask them too.

From planning ahead and providing me with step by step directions if I’m going somewhere new, to accepting that I might not feel able to join in with activities, my own family are lovingly accommodating of my Autism.

But there are others who are not like them. When I started writing on this account, I wanted it to be an outlet for all the things I wanted to say about Autism, and about me, to the people in my life who would never care to hear it.
They will never read these words here, and I’ve grown to be very glad that they won’t. My vulnerability has shown to be something to exploit rather than cherish.
But doing this, here, is cathartic nonetheless, and has brought me more peace than I could have ever imaged.

What I don’t usually share here, are the unfiltered notes I write notes to myself, processing things. This is one of them. ❤️‍🩹

Prompt from

What I need during a meltdown:

My number 1 thing - reassurance.

I want someone to understand that I don’t want to be experiencing these sensations, that I’m scared, and for them to show me that’s ok. That they’re still there and they still love me.

I want someone to sit with me and tell me it’s going to be ok and that I’m safe and human. And sometimes humans do this. Sometimes humans feel this.

I like to be reminded of who I am outside of meltdown. So I know that through the explosion of emotions that feel as though they’re twisting every single one of my organs, I can still get back to ‘me’ again.

I’m a very ‘words-based’ person (words of affirmation is 100% my love language) so having someone gently talk me through a meltdown, without expecting me to respond is my absolute ideal.

Swipe for some thoughts on helping others through meltdown 👉

What do you need in a meltdown? I know others who hate the thought of someone talking to them through their meltdown 😅!

Prompt from

What Autistic masking looks like (for me) -

Trying to stop my eyes from swimming around the room rather than fixing on faces, so people don’t see me as ‘untrustworthy.’

Suppressing my body from moving or rocking, after years of being told not to. Hiding my fingers twirling around each other under a table so no one sees and thinks I’m acting ‘strangely.’

Mirroring someone’s tone and energy so they don’t think I’m ‘bored’ or ‘rude.’

Thinking really hard about the words I use, and choosing ones that don’t feel right to me, but knowing the other person will like them better. And trying even harder not to stumble over them.

Learning not talk about all the information I know, and all the ways it makes me happy, because others find it boring or disruptive to the flow of an interaction.

Wearing an artificial smile and nodding along to things I maybe don’t understand, or maybe don’t believe, because I want to end the interaction as quickly as possible, to avoid overwhelm.

Not letting it show in my face that I’m screaming inside from all the stimuli around me, and my body is desperate to get me somewhere safe.

Being hyper-conscious of what I look like, and assessing on people’s faces whether they are reading my behaviour as ‘believably normal’ or not. Then adjusting as necessary.

Learning painfully over years and years that the way I communicate is considered ‘wrong’ and trying to rectify it by attempting to learn a whole new communication style, which feels completely unnatural and uncomfortable to me.

Masking has been a protection in many ways, and continues to be. There are people, places and situations where I will always need to mask. But it’s a privilege to be able to do so. My life would look very different without masking.

And I still feel heartache that in masking I have also had to fight to recover parts of myself that I lost along the way for 30+ years. To figure out how the authentic blends with falsehood to create the fabric of the mask.

Masking is complex. It’s preserving & diminishing. It’s both a root of, and solution to, a lot of my problems.
Masking means I can choose to disclose my Autism or not. And that’s huge.

It’s my birthday.

I have a complicated relationship with birthdays. Being the focus of attention (real or perceived) can be wildly overwhelming. Any kind of ‘event’ brings things to organise (my biggest trigger for overwhelm), expectations which add heaviness to emotions, and additional demands which apply inertia to meeting even routine tasks.

But - I’m at a point where I’m enjoying growing older.
Sure, the past couple of years I’ve really started to feel the affects of age beginning to take a toll on my disabled body, but there’s a certain comfort that comes with feeling settled in a life you want, and giving yourself permission to grow with it.
I spent so many years fighting against myself in the life I was living, because I knew, somewhere, that that life wasn’t aligned with who I am and what I need.

I feel like age brings us closer to our values. Closer to wisdom that informs the type of care we can give to ourselves and others. Closer to the people that feel like home. Closer to accepting the reality of temporary experience, and everything that involves.

I have no idea what I’m doing in life; but I know I’m enjoying who I am, whilst I do it.

‘Autistic Joy’

My biggest sources of joy are my family, being out in nature and indulging in special interests.

What brings you the most joy, and how do you experience the sensation? ✨

prompt from

‘Dispel a Myth About Autism.’

There are many myths we could (/should) try to dispel about Autism, but writing comprehensive lists isn’t my thing. Bumbling through emotional chaos to find answers, is.

I’d like to think that my existence dispels myths about Autism. How I talk to you about Autism dispels myths. That I’m simultaneously everything and nothing like stereotypes you’ve heard, if you look closely.

Because I could sit here and recite you facts that many others before me have: ‘Autistic people can have any level of intelligence;’ ‘Autistic people can have any level of empathy;’ ‘Autistic people don’t have to look like this or that.’

Or, I could show you all of those things and more, without spelling it out, because sometimes there’s just too much to spell out. And spelling it out without bells and whistles and all the emotion that goes into *living* it; might help you know it, but it doesn’t help you understand it.
I could exist radically, and authentically. Along with many more of my beautiful friends, and their families, who share this neurotype. Who dispel myths every day with the multitudes held inside their beings.

I could be more than a dictionary or an encyclopaedia. More than a deficit and a strength. More than a list of traits and not-traits.

I could be human - with everything that entails - and you could see it.

prompt from

Over-sharing and over-concealing.

This is something which is coming up a lot in my current introspection and self-work.

A huge facet of my personality is that I share a lot.
Perhaps I overshare?
Maybe this comes from a place of being uncertain of social convention and what makes in/appropriate conversation? Perhaps it comes from desire to make meaningful connection after years being left in emotional isolation? But I also conceal a lot.
I share, whilst actually revealing very little about myself.
Maybe this is protection? If people don't see me, they can't truly hurt me?
We all make surface level assumptions - big or small.
We all create storylines in our heads which we assign to people around us - near or far.
I allow people to project their own image of what person I am onto me, without truly knowing me at all.
That's a thing I'm working on. But for years it felt easier to exist as a version of me, rooted in someone else's fantasy, than to exist wholly and authentically and be rejected for it.

I’m realising recently that a lot of the things I share to others show my humanity, but not what makes me human.

None of the silliness - my sense of humour is slapstick and giddy. None of the songs l've played on repeat for years, which have provided the soundtrack for stomach-twisting tears and chests full of joy. None of the hours spent in hyperfocus trying to draw in perfect proportion; a mound of crumpled up paper thrown behind me. None of the obscene number of burnt pans from a rich history of disastrous cooking attempts. Nothing from the stock of bogus 80s dance moves that fill my repertoire, because I grew up on a diet of John Hughes movies and rose-tinted nostalgia. None of the books whose words taught me more about what it means to be human than engaging with real humans ever did.

Imagine how free it would be to feel a human, with humanity.

As we approach April and , we always begin to see critiques on whether it should be ‘Autism Awareness Month,’ Autism Acceptance Month’ or ‘Autism Appreciation Month’ etc.

I’m once again making the case for ‘Awareness’ in its entirety - I don’t believe it’s a word we should be banishing from Autistic lexicon - and how awareness is foundational to birthing change.

‘Awareness' is often taken at face value. It can be translated simply as ‘people knowing about Autism.’
But I don’t believe awareness is simple. Especially when so many are ignorant to what Autism is. Especially when so many are completely unaware they may be Autistic themselves.
I believe there are many forms of 'awareness' - some of which we might personally feel we have accomplished all, or parts of; some of which we might still have a lot of work to do on. These are a few 'types' I've identified - I'd love to hear if you can think of any others?

NOTE - these are just my own musings. I am not suggesting that anything in these slides is definitive or should serve as a perfect example.
There may be crossovers between 'awareness,’
'acceptance' and ‘appreciation’ in the examples shown, because it's pretty difficult to isolate them without each other. (And I'm not sure we should be doing that either.)

TL;DR - I like acceptance, I like appreciation - I want both of those things - but I don’t think they should make us turn our backs on ‘awareness.’ Awareness is more complex than it often gets credit for, and that needs acknowledging too. Awareness, acceptance, appreciation can all go together.

Since my youngest son began showing a whole variety of differences, in greater intensity, to those we already experienced in our ND family, I have been looking for the right language to describe them. Both socially, and to healthcare workers. There doesn’t seem to be one that’s both colloquially and medically accepted.

I agree, functioning labels are deeply problematic for a myriad of reasons, and that anything which measures your human worth against how well you can perform for Capitalism, is not for me.
I agree, naming something by ‘severity’ is problematic. It feels as though it strips the bearer of their dignity.
‘Low masking’ for me is problematic, because so many difficulties and co-morbidities are not linked to masking at all. And how does this pertain to children who are too young to mask?
Referring to the level of support needs required is a decent option - but it can be cumbersome. It’s one limited to being understood by those who are already familiar with our language, and the realities and complexities of Autism.
‘Support needs’ is vague. My son has high support needs across different areas - but support pertaining to what? It invites questions. Questions which require an aperitif of education on the infinity of the Autism spectrum in a complete, straightforward, bite-sized way. To be delivered in how many seconds, in a window of conversation?

The language we use is both trivial and important. A point of contention which creates division, hierarchies and alliances. AND it’s the way we advocate for ourselves.
I wonder how much that language will change throughout his lifetime? I hope we find the right words some day.

It’s

I’ve been navigating my own disordered eating since childhood, but most recently the focus has been on my youngest child’s eating.

All I knew before him, was my oldest son’s experience with food.
Biggest child and food is a love story for the ages. That boy can eat. And eat. Everything. He’s never met a food he won’t acquaint with his mouth.
As soon as he was presented his first meal (wedges of boiled sweet potato) his eyes widened, fixated on the new orange thing before him, and his nose thinned as it always does when he’s about to go in HARD on something. He squidged and smashed with abandon, then pounded both hands, covered in mush into his face. I thought that was how it was, and how it would be, again.

It wasn’t. And I didn’t know that for some babies, food is a source of fear. That there might be no ham-fisted splattering of food into faces. After the first year passed, and there was still no food being eaten, I started to worry. No one really listened to me. I worried even more when we got to the second year, and it was clear that food was ‘something to avoid at all costs.’ The ‘cost’ has mostly been health, for both of us. My son’s physical health suffered from lack of nutrition and hydration; his mental health undoubtedly suffered from being unable to vocalise his anxieties. My mental health suffered the stresses of being unable to provide adequate nutrition, navigating health systems, and my relationship with food worsened too. It felt too much like an enemy, to enjoy it any more. People started to listen then.

Now we’re under a paediatric dietician and she’s explained that he meets all the criteria for ARFID (Avoidant / Restrictive Food Intake Disorder) - an eating disorder I knew woefully little about.

From what I’ve seen, this is something many in the Autistic community know of, or experience themselves - but outside of it, I’ve found such little understanding or awareness. This can make it very difficult to navigate with friends and family. So I’m taking a break from my usual kind of words to share our experience informatively.
(I don’t like sharing generic lists of symptoms; hope it’s still useful!)

💭 on healing.

I’ve been feeling pretty ‘doomy’ lately. This season is one where I always seem to have to process the most… Intermingled currently with a lot of health stuff; there are a great big ton of emotions going on.

‘The Doom’ (for me) is what I believe to be anxiety relating to experiencing emotions and emotional processing. Do you experience ‘The Doom?’

Char Writes ND updated their website address.

Some thoughts on my experience of RSD, whilst recently going through a lot of rejection.

do you experience ’The Doom?’

Coming from these spaces - where we know the language of Autism; the feeling of Autism; the reality of Autism - to the real world where we face ignorance and pushback is crushing.
It hits harder now, trying to run correctly into red tape, in order to earn ‘expert’ validation.

It can be so comfortable in these spaces. That’s why, for all the crap that has the potential to come with it, we stay. We have social interaction on our terms and in our capacities, with people talking back to us in our own language - often for the first time ever. It’s easy to forget that in the real world, not everyone has the same literacy of Autism as us. Not many. Hardly any.

I won’t deep dive into my children’s stories here. A shallow look is all you’ll get.
My biggest boy. My precious boy. My boy who fizzed with so much electricity from the day he was born. My boy, held by a midwife at 2 days old, who felt that he was different. ‘You’ll have your hands full with this one.’

No one wants to hear him. No one wants to learn our language and see beyond the mask. ‘Too clever,’ ‘too inquisitive,’ ‘just boy-ish,’ ‘just quirky.’
They won’t see the late nights crying for fear of failure - of getting one question wrong. The explosions of emotion. The ‘late’ milestones. The unbelievable depth of research and interest behind the ‘astonishing’ facts shared. The communication by animal noise: repetitive roars and the soothing shrieks. The weeks-long adjustment to slight change. The screaming at socks which don’t sit right.

Because outside he’s ‘too’ good at being ‘just’ what everyone wants to see. Too good at sitting on a floor with crossed-legs and a zipped-mouth, just like I was.

So here’s a resolution - to not lying down.

Did anyone else ever feel like their undiagnosed Autism manifested as something which felt supernatural?

👋 Awkard photo poses are my forte 🤌

Hello new friends who joined me in April. 👋❤️ It was a much faster pace than normal, so I’m slowly diving back into my posting rhythm.

The nature of what I shared during Autism Month, was a lot more ‘to a point’ than my usual shares. More closed-ended, more like ‘information,’ less like florid torrents of wet narrative. I do ‘information’ sometimes, but not often.
I don’t like my work to smack you in the face, but to stroke you across it.
I want to draw you in closer to discuss; not tell. You’ll know my thoughts and my feelings.
You’ll know which sides of fences I’ll stand on. Explicitly. Just through a medium that tries to be fluid.

I tend to shy away from headings and slides, because when something’s laid out in a graphic, it feels more finite to me. Organised and shareable and fit for consumption. I’ve never felt like that type of person. Not a finished product. Not the type who is naturally inclined to deal in statistics, or to underline my opinion. I’m curiously messy and that’s exactly how I want to be.

I like to write like *this*, and share like *this*. Where you read the words, and maybe even read them again, to make sure you’ve met the crux of them - because we don’t deal in high-speed here. Life is already too fast and there is wonder in slowing it down.
I want us to time-travel for a little bit.
Take a detour out of fast-pace, to ponder something which hasn’t been laid out for quick consumption. Slowing down feels like gaining time.

So if you’re new here, welcome ❤️ you might be disappointed in the way I most like to write about Autism, but you might also find comfort in something less-expected.✨ Thank you.

Feel free to introduce (or re-introduce) yourself in comments if you’d like to!

Celebrate your Autistic identity 🎉

My partner and I were recently talking about ways we might have changed since we first met. He said to me, ‘you’re just less fizzy.’

We met pre-diagnosis. Pre me having any idea what Autism was. I was fizzy. That fizziness was anxious, explosive energy, ticking away under the surface. Energy built up from a lifetime of feeling completely lost and confused and alien. A lifetime of feeling constantly overwhelmed and on-edge from sensory assault. A lifetime of being othered and hurt by people I just wanted to love.

The fizziness was always there, I was constantly one move away from fizz-explosion. Explosion wasn’t always a bad thing, sometimes it was complete, euphoric joy. An explosion of glittering fireworks that I loved to feel, and others loved to see.
But sometimes explosions were painful tears, loaded with crushing sadness; or frustrated rage from not being able to keep a hold on anything. Explosions that hurt.

It’s hard fizzing - living your life teetering over a cliff edge. I couldn’t keep fizzing. I exploded one last time, then nothing. A black hole human. Burnt-out and unmoving. That’s when I was given the grace to stop fizzing. “You’re Autistic.”

The constant, hissing fizz below the skin’s surface has been replaced by a gentle glow, deep within. One that doesn’t change me, but guides me. One that sits in my belly and radiates warmth through my body letting me know I’m okay.

Embracing an Autistic identity did that. ✨

•

One tip for parents of autistic kids

Throw out the rule book.

The most freeing thing I’ve done as a parent is refusing criticism that’s based on archaic, Western parenting ‘principles’.
The type of principles which believe in children being seen and not heard, requiring minimum emotional input, slotting neatly into parents’ pre-existing lives, and strictly adhering to matching developmental milestones.

As a society, we seem to love passing judgements on ‘difference.’ I can’t tell you have how many times I’ve witnessed conversations in hushed voices, with clutched pearls, about little X’s behaviour. About little Y’s grades. About little Z’s eating habits. Everyone has an opinion on where your child should be, and how you should get them there.

Kids don’t follow a rule book. Autistic kids especially don’t follow a rule book.
When you’re dealing with developmental ‘conditions’ like Autism, you’re fighting harder against those who say ‘this is what a well-rounded child looks like. This is what a well-rounded child can do by this age.’

My youngest (referred for Autism assessment at 18 months) has always refused food. Any food - in any shape, way, format - just doesn’t like food. He can’t handle the sensation of things in his mouth.
One of the ‘developmental milestones’ a baby is meant to reach, is the ability to bring objects to their mouths by around 6 months. My baby never did that. He’s only just started sporadically doing that now at 2 years old.

So we ignore the rule book, and we go ‘backwards’ to go forwards. If he wants to pick up and try a dummy (pacifier) at age 2, that he’s never even sniffed at before, he can. Get that mouth exploring! If he wants to tentatively lick purée from a spoon I’m holding, 18 months ‘too late,’ he can. Get that food in your belly!

Rule books go hand in hand with shame for anyone that doesn’t follow them. Who does shame serve? Not me, not my children.
Enjoy meeting your child wherever they are on the developmental charts, whatever their personality; and parent the child in front of you, in all the ‘weird’ and wonderful ways they want to be parented. ❤️

# prompt

Three Tips for Sensory Overload

I’m still not sure I’m the one to be giving tips. 😅 These are things that are good for me, and that my lovely partner does for me. Maybe they can help you too. Maybe not. 🤷🏻‍♀️ That’s ok!

3 tips for Autistic people first, then 3 tips for allies ❤️

Do you have any tips on Sensory Overload to share? 🤗

# prompt courtesy of

Tell me you’re the parent of a sensory-seeker, without telling me you’re the parent of a sensory seeker.

❤️👀

Child number 1’s keen abandonment of his parents the second he spots something boggy or wet, and the soft ‘thwap thwap thwap thwap’ of footprints rhythmically slapping over mud, in the near-distance is a big one for us. This child has sludge-dar 📡🚨 he will sniff out some muck the second his nose hits fresh air.

Parenting children with sensory profiles which are wildly different to your own can be enormously challenging. My sensitivities get triggered readily and plentifully. But there is peace in knowing that my children have the freedom to explore and know their own ways of being.

That we may not be perfect parents, but we do our best in making room for our children’s authentic selves. We don’t ask them to fall neatly into little child-shaped moulds - moulds like those I was haphazardly mashed into, by big people with ham fists and puzzled looks.

If I can give them anything, I want it to be the safety to be messy. To dive giddily head-first into mud, if it sparks golden electricity across the nerves. To meet sadness with the ability to cry until the throat is raw and the soul is rested. To make mistakes, or say ‘I can’t do it’ and know the promise of warmth from a pair of arms, stretched out, at the end of that sentence.
Arms ready - and somehow willing against every fibre of their being - to get covered in mud.