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Connecting Autistic Voices

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You can write for our blog!

If you want to tell people about your research, art, project, campaign or just share your experience and narrative, you can do that here.

We seek to support and empower the voices of all neuro-minorities, regardless of nationality, gender identity, sex, sexual identity, sexual orientation, age, ability or preferred method of delivery.

To that end, not only can you write for our blog, you can also make use of our YouTube channel and, hopefully in the future, if we have enough interest, our podcast!

Limited

A word that’s seen a lot in relation to neurominorities is limited.

We have a limited capacity to understand. We have a limited verbal ability. We have limited learning potential. We are limited in our ability to empathise.

Limited.

But is it truly limitation? Or is it oppression?

Is it we who fail to empathise with others? Who ostracise anyone who is “other”? Is it we who don’t see things from others’ points of view? Is it only we who fail to effectively communicate? I don’t believe so. We’re being oppressed. We’re having limitations forced upon us by the very people doing the things they accuse us of. It’s probably the longest and most insidious form of gaslighting the world has ever known.

It never occurred to them, it still doesn’t for most of them, that someone may think in a way that differed from their way. It never occurred to them that effective communication comes in many forms. It never occurred to them that other might be good. We’ve seen it over and over again, the oppression of anyone who is “other”…

And yet… Of course we know that others think differently to us. We’ve known that our whole lives because the second we can make coherent thought and try to express it, they oppress it and force us to outwardly change that expression. They force conformation and when we don’t comply, when we don’t conform, we are “othered”… We are bullied, we are punished, we are chastised, we are corrected; we are oppressed.

So, from today I refuse to accept any label of limitation. I will proudly say “I am not limited. They are your limitations, not mine. I won’t be bound by them any further.”

It’s quite liberating. Say it with me.

I am the Other

In the first of our Magical Women series, we have an offering from… Me… I’ve been writing for Magical Women for over a year and have found the experience liberating and empowering. Here is one of my latest poems.
This piece came about when my therapist and I discussed identity. I felt that I didn’t know who I was without the identity labels given to me by others and she suggested writing these labels down. There were a lot. Every one of these has been said to be either literally or metaphorically. It paints a dire picture… I much prefer the identity I’ve found for myself after unpicking all these things and shedding the identities others tried to force on me.

I am The Other!

I am the mouth
I am the scowl
I am the attention seeker
I am the noise

I am the stim
I am the nuisance
I am the bother
I am the burden

I am the one
I am the common factor
I am the storm
I am the mess

I am the ousted
I am the nothing
I am the useless
I am the forgotten

I am the unwanted
I am the never
I am the forsaken
I am the statistic

I am the faceless
I am the not
I am the rootless
I am the nameless

I am the blamed
I am the deliberate
I am the feckless
I am the inconsistent 

I am The Other!

You can write for us too, just click the contact button!

Announcing a partnership!

We are excited to announce that we have partnered up with Magical Women – A platform for Neurodivergent artists to share their work and support each other!

So, over the coming weeks, we’ll hopefully be sharing with you work from some amazing neuro-minority women!

We See You…

We are very excited to have our very first guest post! This poem was submitted by an Autistic writer who wishes to remain anonymous for self-esteem reasons.

We see you,

We love you.

You with your ear defenders.
You with your clicking fingers.
You with your hidden eyes.
You with your flat shoes.

We see you,

We love you.

You in the binder.
You in the wheelchair.
You with no speech.
You with flapping hands.

We see you, 

We love you.

But you…

You with your one dimension.
You with your gold glazed eyes.
You in your mouth seat.
You in your blue suit.
You in that big house.
You in the big chair.

Why don’t you see them?Why don’t you care?

I’m here with open eyes.
I’m here with open arms.

My people are your people.
They’re here and they see.

We see you!

We love you!

Verbal Diarrhoea… Oh dear…

What to do when, after decades of personal oppression and centuries of community oppression, you’re asked for your input on something that your community should be running themselves already?

I mean, on the one hand, you jump at the chance! Of course you do… On the other hand, when finally given a chance to speak… How on Earth do you manage to shut up?

Myself and a fellow autistic student with the Open University were just in a meeting with two staff members who are organising some upcoming tutor training on understanding neurodiversity and the needs of neuro-minority students. We were very excited to find that not only did they actually want to include us, they were also enthusiastic about not shutting us up, even if we wished they had for the purpose of focusing the meeting!

I’ve always struggled with knowing when to shut up and it’s caused me no end of problems. I either don’t speak at all, even when I should, or I start talking and don’t stop. So when I’m actively encouraged to speak, after a lifetime of being told to shut up… I’m not entirely sure how to handle it at all… But it would seem that, contrary to what all my teachers wrote in school reports, my verbal diarrhoea may be useful after all!

Take that teachers who said “will never accomplish anything unless she learns to shut up!”

HA!

That said, a bit of control would be nice… I’m going to work on that…

In the meantime, I have custard donuts!

An Aided Epiphany


Content Warning – Discusses some childhood traumas, dysmorphic disorder, bullying and mental health consequences of trauma.

Earlier today I tweeted this article from the Neuroclast website. It questions whether autism is, in fact, a social development issue at all and explains the theory of autism actually being a “sensory-movement” issue, where our neurology interprets and responds differently to any number of stimuli, not just the socially motivated ones, and that this is how the misunderstandings arise.

This makes a lot of sense to me, for a number of reasons.

Firstly, whenever the majority of researchers try to explain anything to do with autism from a behavioural or social perspective, they fall woefully short of describing the realities of the autistic experience. They pathologise, infantilise, disorder and other us. It’s demoralising and dehumanising but it’s also based on a lot of assumption and guess work. In fact, during my degree so far I’ve been surprised at just how much guess work there is out there, being used in policy and resource creation for people who they clearly don’t understand! But that’s a different issue for a different day.

The thing that struck me on a personal level about this theory is that it explains the deficits between the behaviourist model and the actual experience of living as an autistic person. Drawing on executive function issues, stimming, echolalia and more, it takes you through the nervous system and explain the chemical and neurological aspects and how they manifest in real life situations.

All my life people have hated me. I don’t pretend that I didn’t sometimes do something to deserve it, I can be rather obnoxious, but the majority of the time, I was despised before I ever had the opportunity to do anything to instigate it! I can walk into a room full of complete strangers who can’t possibly have any pre-assumptions or knowledge of me and before I speak or even make eye contact, they despise me and they do so in such a way that I can physically feel it! I get called a liar or an exaggerator over this a lot but I think some of you out there will know it’s neither. You’ve experienced it too.

I tried so hard to make that different, first by trying to be as unassuming as possible… Or as unassuming as it was possible for such a young child to be… And then I tried to control the narrative. This was the method that sticks with me, even now. If people are going to stare at me, I give them something to stare about. I’m loud, I’m the clown, I’m the witty banter girl who draws attention with humour and self-deprecating wit! … Because showing humility and debasing myself like that publicly makes people hate me less. They either shrug me off as an attention seeker who isn’t worth paying attention to or they see through it all completely and see an extremely insecure person… Well… That was the plan anyway… And in some small cases it did work. For the majority of cases though, I just made myself an even bigger target… I gave them something to blame their despise of me on and then expanded on it, making my life miserable and getting me to blame myself for it. I was too loud, it was my fault. I was an attention seeker, it was my fault. I was mouthy, I deserved it. I didn’t know my place, I got what was coming to me. I was a pathological liar, I needed a smack.
Even now, as an adult who tries my hardest to reign those impulses in, I still get this immature, school yard bully, behaviour levelled at me. No matter how demure, self effacing, quiet or charming I am… And believe me, after years of working with armed forces veterans, I know how to be charming… They still hate me.
I get accused of being aggressive, no matter how calm and laid back I’m deliberately being.
I get excluded, insulted, spoken over, attacked and any number of really demoralising and socially humiliating things.

The explanation I got when I was younger was that it was my face. I can’t tell you the amount of times someone or other took it upon themselves to break it because they were sick of “being forced to look” at my ugly, disgusting, gross, pathetic or whatever awful word they looked up in the thesaurus first, face… I now have rather crippling dysmorphic disorder… There is one mirror in my whole house and it took me years to agree to that single mirror. I rarely take pictures of my face and it’s a source of great upset and anxiety when I do or when other people do it to me… But I’ve been guilted and attacked into letting people take photos of me too, no matter what my discomfort because, as one professional photographer said to me when trying to emotionally blackmail me into buying photos, my children deserve to have photos of me when I’m gone, instead of me being missing from all family photos. That really stuck with me. The idea that I was hurting my children through my inability to let go of years of brainwashing. It made me feel weak and a bad parent. So now I smile and I don’t look. I don’t want to see my face in photos… I don’t want to literally vomit and have to stop myself from clawing my face off (which I have tried to do in the past, I have the scars to prove it… Another thing I was accused of lying about by so called mental health professionals when I was literally screaming for help)… Because all of this is an overreaction for attention, right? I’m just making it up to make others feel bad or whatever… The fact that very few people know who the person behind this blog is won’t matter… I’ll still be called an attention seeker… And if I were to include a photo, I’d still be told they were right and I’m disgusting. It happened the last time I tried to discuss this issue.

I digress again… It’s a related digression but a digression nonetheless…

The point is, if it was something about my body language all along, which I’ve suspected for a little while, whilst still telling myself that the body language was something I should control… But if it was my body language, controlled by my nervous system… Then I never really had control of it to begin with and my inability to mimic them wasn’t because I’m stupid… And once again another aspect of my life has been controlled by the limitation of others, not only by my own limitations.

They say that it’s a characteristic of autism to be unable to access the Theory of Mind… But it seems to me that it’s not us that finds it difficult to put ourselves in someone else’s shoes. It’s not us that can’t understand that people think differently to us. We have to live our whole lives in knowledge of this and trying to accommodate it.

It’s not us who exclude those different to us and who have created a world that only works for one type of brain and one type of social being! This isn’t our limitation. It’s theirs!

I’m not saying that some of the responsibility shouldn’t be on us, it should… But currently ALL the responsibility of changing understand and changing behaviours and adapting is put on us! The very people they say can’t cope with change! No! We just don’t cope well with being constantly manhandled and abused into following arbitrary, non-written rules of a society that doesn’t reciprocate those demands one bit!

Ok, I made myself a bit mad a went on a tangent again… So I’m going to stop because what was a migraine is now a headache and I don’t want to make it worse by continuing to look at the screen.

Thank you, once again, for reading my rather weird ramblings.

Please feel free to disregard it all.

Dreaming and Longing…

When I was in my early twenties, an Ed Psych told me to quit college. He said I’d never finish anything, never write a book, never work with animals, never go to university and didn’t have it in me to finish anything I started.
Years before that, whilst still in high school, another Ed Psych had told me that the best I could hope for was to find a good husband, with a steady job, to look after me, whilst telling my mum that I just wasn’t being challenged enough.
This was just based off both of them assuming ADD (Attention Deficit Disorder), which they both labelled me with but refused to officially diagnose. One because he said I’d use it to try and get attention and the other because he said it was pointless for someone like me… Because identifying a “problem” is fine but giving me documentation of it isn’t “unnecessary”.

So, I quit college. I never qualified in animal care, never worked with animals after that and went into a state of depression that resulted in over a decade of crippling mental health issues, including agoraphobia that I’m not sure I’ll ever fully shake. I can count on one hand the amount of times I’ve left the house alone since 2008. I can count on the other hand how many times I’ve left the house without my husband since 2014.

I found myself a decent, hardworking husband with a good job, like the first Ed Psych suggested. It was a complete fluke. After discussions with him, which was the straw that broke the camel’s back in terms of me wanting a family, I frequently vowed to never marry or have children. But I met Himself and never looked back. He’s my safety, my rock and the steady foundation under my feet. For the first time in my life I had a protector, a real one. He didn’t understand everything about me, heck I still bloody don’t, but he didn’t have to. He just accepted me. Not “flaws and all”, unnecessarily pointing out that nobody is perfect. He just accepted me.
But after years of medical and psychological neglect, societal abuse and oppression, institutional abuse and conditioning; something in me snapped.

You know when you’re surrounded by loads of triggers that set off your danger warnings? It’s loud, there’s loads of people brushing against you, everywhere people want something from you but won’t explain what it is and pretty much all the other things that happen every time you’re in a school, work or social setting? And yet, you don’t have a meltdown, something in you, the masking probably, keeps you together and on your feet… But then you get home, to your safe space and BAM! It hits you in every possible way and you crumble… Even if it’s just for a little bit? Well, that’s what I did.
I met Himself, he made me safe and gave me, for the first time in my whole life, a refuge, a place where I actually knew, for the first ever, that I was truly safe. My brain finally got out of survival mode and had a chance to process… Well… My whole life… A life of every sort of abuse on the list. Physical, emotional, institutional, sexual… All of it came crashing down on me after a pregnancy that had almost killed me due to medical neglect. It was most definitely the last straw and my brain and nervous system just broke down.

It’s taken me fourteen years to claw my way out of that and I’ve done it with virtually no support. One mental health professional, out of the ridiculous amount I’ve seen, was helpful. The rest were worse than useless, with one or two actually triggering me into worse mental health states. It’s only in the last few years that I’ve accumulated friends who understand the whole of me, truly all of who I am, and who love me anyway. This isn’t to disparage old friends, they just have their own lives and never stuck around after I stopped socialising the way they did. Pubs and whatnot…

I did finish a novella… Years ago, partly just to prove that I could… And I’ve written a series of children’s books… Not sure if that counts, as short as they are… But I have achieved that… But this degree… If I can finish this, after being told over and over and over that I was too stupid (by the same people who also called me academically gifted to my mother! Bloody fools) and that I didn’t have it in me to achieve anything… All this they drilled into me based on an assumption of ADD and an “attitude problem”… What would they have said to me if they’d looked a little harder and discovered the Autism staring back at them?!

My biggest dream right now is to get a doctorate. Which is scarily similar to the dream I had as a little girl, before they taught me to stop dreaming, that I wanted to be a university teacher… I say it’s a dream but it’s not really. It’s a longing. I look at that possibility and sometimes may discuss it with friends with bravado but inside I keep telling myself it will never happen.

People like me aren’t empowered to succeed. It’s more than just being Autistic, it’s everything else that came as a result of it that people won’t accommodate. Even if I do manage to get the grades, despite the really appalling lack of effective support available at the OU, what uni will take someone on for a Masters who struggles to go outside alone? Who struggles to sit in a classroom setting? Who has demand avoidant issues and for whom authority figures are so triggering that my response to them switches between arse kissing and demand avoidant?

My dream will likely never come true… That’s part of the reason for this website… Even if all I manage is to inspire someone else’s dream… Someone stronger, someone who can succeed, that’s better than nothing.

That’s better than better than nothing, really. I’m used to helping people reach their potential whilst being kept down myself and if that’s what I’m meant to do then I guess it’s a noble cause.

This now sounds like a pity party… But that’s not how I mean it. Generations of women have had to smash glass ceilings, knowing full well that it would be others that reaped greater rewards. Some of us are standing on their shoulders but also having to do the same thing. I’ll be happy if that’s all I have. If I can know I’ve helped then it was all a little worth it, I reckon.

Ugh. I hate sounding like I’m whining. Being called an attention seeker is a huge trigger for me, as it probably is for many of you… But this isn’t about getting attention for me. I’m not the point. You’re the point. You and the generations who will come after you.

Our struggle is worth it if it makes it easier for people who will come next… For the ones who will be you told “you can do this” instead of “just give up.”

Wiggly Trees and other Ramblings…

I keep telling myself that I have to write on here daily for as long as I can… But I bloody hate rambling and if I keep writing for the sake of it, that’s all I’m going to write. Ramblings with no point.

I have my final assignment to write. It’s the big, end of year one where I’ll have to go back through all the chapters and all the notes and even though this is one of my absolute special interests, I still can’t muster the functioning to do it. It’s difficult to focus on the next thing when you don’t have the results from the last thing yet… And it makes me worry for the future. If this burnout is what I get during undergrad studies, what will it be like if I muster the self esteem (and the grades) to go postgrad? It’s something that worries me a lot. It shouldn’t. I still have two years of this to go yet… It’s a way off… But if my brain only thought about what I wanted it to, it wouldn’t be my brain. My brain is a bit of an ass, truth be told.
I mean, don’t get me wrong, my brain can be pretty cool too. I’m terrible with names but I never forget a face but only if I can get a look at a face when it isn’t focused on me because… Well, just don’t look at me and it’ll be fine. 🤣 But that’s a cool thing. Watching a film and knowing where you’ve seen even the most obscure actor before. I can almost do the same with voices, which is weird because my auditory working memory is crap and “faulty” (at least according to the very nice lady who diagnosed my SLDs).

The other thing I really love about my brain is the way it uses words. I can’t always get them from my brain onto the page, which is frustrating, but just hearing the words and sentences it comes up with inside is quite inspiring at times.
I remember this one time, I was out in the car and I saw this really beautiful tree! I love trees! And my brain said “see how the branches twist and writhe to reach the sun’s splendour?”… What came out was “that tree’s reyt wiggly!” (I mean, I am from Yorkshire, the accent is more obvious sometimes!).

See… Rambling!

If you’d like to see something on this blog other than my nonsense, please feel free to save my poor blog by contributing! Just use the contact form and let me know what you’d like to write!

Stay well all!

Say no to ABA!

I was going to leave a short one today saying that my burnout was only a teeny bit better after a day mostly hiding in my bed… But instead, I’ve come across some pretty disappointing news…

The National Autistic Society has been advertising for an ABA Therapist.
ABA (Applied Behavioural Analysis) Therapy teaches autistic and neuro-minority children that their “symptoms” are bad and condition them into more neurotypical manifestations. It’s a more aggressive and toxically positive way of doing what society already does to us anyway… For more info on ABA, you can look here and here and here (this last one links to many other useful sources too).

So, here’s the thing… This therapy does not take into account the wants, needs, feelings and long term emotion, identity and representational development of the child. It only supports neurotypical standards of communication and doesn’t teach autistics anything but how to toe the line. It’s conversion therapy and nothing more.

Due to my burn out, I really can’t write about this as well as I’d like to right now… But I will do so at a later date with more eloquence and a boatload of peer review to back up why this is not just harmful but ableist and really rather lazy and just a little stupid!

Thanks go to Autistic Teacher and ABA PBS Autism Controversy over on Twitter for highlighting this.

Here in the U.K. The National Autistic Society is supposed to be a voice for us. Someone who we can trust to work for our interests. Turns out all they want to do is assimilate us… As usual who we are isn’t good enough and we must adapt to their arbitrary rules of polite society… Because that’s all working out so well for society, isn’t it? 🙄

I’m going to back to hide in Outlander until I have the brain to deal with this… *sigh*

Burnout Begins…

I handed in my final tutor marked assignment this afternoon. Immediately afterward, I felt an almost overwhelming exhaustion that was so powerful that I struggled to move.
It’s gotten worse. It’s now almost six in the evening and I’m in bed with an increasing headache, on the verge of a panic attack, trying to distract my mind with the same shows I watch over and over and over because I know they’re safe and they’re known and comfortable.
I need comfort. I need sameness. I need my brain to realise that it’s ok to turn off now. It’s ok to rest.

This happens every time I have to do A Thing. Once The Thing is done, I crash. If I’m lucky. Sometimes the crash happens before I’m done and I sometimes feel like this whole degree so far has been a series of fights with myself… A race against the crash. I haven’t always been successful. Last year I had to defer because the crash got me and I just couldn’t get out of it… There is no support that can effectively help with that right now. No reasonable adjustment to accommodate it.

I didn’t want to let the crash take this new venture away from me so soon. I promised myself that at least at first I’d try to write something every day… But trying to form words is getting more difficult by the moment… And the migraine is getting worse… And I’m not sure how long I can hold off the vomiting…

Tomorrow is a coin toss… It could be better. I’ll still be tired but it’s better than this… Or it could be worse and that worse could last for anything from days to literally weeks… And I can’t predict it, I can’t control it… I can’t even treat it…

This isn’t the autism. This is what happens to a nervous system when it’s been so badly abused… This is the side of autism that people don’t like to discuss. What happens to those of us who have to learn to live in a world where we don’t fit, where we’re told we don’t belong and never given an explanation…. This isn’t the fierce, proud survivor who’s advocating and standing tall in their power… This is me broken in a way that will never be fixed.
Nothing can fix this. No activism can save me. I just have to live with it.

I know others will be reading this and understanding because you’re living it too. This isn’t news to you…

I’m not even sure why I’m using my limited remaining energy in writing this… Bearing witness, maybe? If we only ever open our mouths when we’re capable, if we only ever show them our power, they’ll never see what they’ve done to us… Because despite what I spent my life being told, I didn’t do this to myself.
I’m not to blame….

But I am exhausted… So very tired.

Let’s see how long this burnout lasts, shall we?

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