Category Archives: Uncategorized

Meet the campaigners and storytellers making equality for disabled people a reality

Hooray!
(Plus I love Carly’s Autistic Girl Power t-shirt)
Changing the paradigm 🤗

Scope's Blog

Today is the International Day of Persons with Disabilities (IDPD). The theme this year is “Transformation towards a sustainable and resilient society for all” and the UN agenda pledges to “leave no one behind”. But far too often, disabled people are left behind and it doesn’t feel like our society really is working for all.

Scope’s new strategy is focused on everyday equality but we can’t do it alone – it requires a collective effort of everyone working together. On IDPD, we’re highlighting some of the amazing campaigners and storytellers we’ve been working with this year.

Shani is tackling extra costs

From expensive equipment to higher energy bills, disabled people and their families pay more for everyday essentials. Support to meet these costs, such as Personal Independent Payments, often falls short. When you face so many extra costs, it can stop you from being able to go out and do things…

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I love this community! [and an update]

the silent wave

Never in my life have I known a community as supportive of each other as the Asperger’s/autistic community here on WordPress. Holy cow, you guys are amazing! ❤

Before I get started, I’d like to send out a massive thank-you and shout-out to the lovely author of An Autism Observer in particular for her especially kind support! She knows what I mean. We’re working on processing as we speak! 🙂 ❤

I wanted to let everybody know what’s been cooking over the last few days!

YouTube Channel!

First, I did indeed create a The Silent Wave YouTube Channel. It does not have any videos uploaded yet, but they’re coming soon! There’s a bit of a learning curve to “doing YouTube”, especially if you’re a perfectionist like I am and want to do it “right” (well, “right” for me, anyway). 😉

Before now, I hadn’t been involved much with YouTube…

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New Research Suggests Social Issues are Down to Neurotypicals more than Autistics

As Damian Milton commented on fb: well, well, well! ☺

Intersectional Neurodiversity

colorful-brains-560 Picture by Joan M. Mas

Autism is seen, in popular representations, largely as a social and communication disorder. Formally framed as stemming from an autistic lack of a “social instinct”, the current dominant idea is that something is deficient or missing in autistic social cognition. Often referred to as a cognitive deficit in “empathy” or “theory of mind”, much research on autistic social issues has focused on trying to clarify and detect this inside autistic brains and minds. The search for an elusive broken “theory of mind module” or “empathy mechanism” in the brain, and its ensuing cognitive manifestations, however, has led to conflicting results – with some scientists even concluding that autistic people feel too much empathy rather than too little.

Another view is that this is not simply an individual neuro-cognitive issue, but rather a wider social problem. Against the idea that autistic people have too much or…

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Should I Use the Adjective “Diverse”?

Radical Copyeditor

It has long been a pet peeve of mine that the word diverse is widely misused in the English language. Diverse is defined by Merriam-Webster (my favorite dictionary) as:

  1. differing from one another
  2. composed of distinct or unlike elements or qualities

Unfortunately, diverse gets misused to refer to people or things that differ not from one another, but from what is considered to be mainstream, dominant, or the cultural norm.

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Sometimes I don’t know what I’m feeling

the silent wave

“What are you feeling?”

“I don’t know.”

“What’s wrong?

“I don’t know.”

“Why are you crying?”

“I have no idea.”

Before I realized that I was on the Asperger’s/autism spectrum, I had no idea that sometimes I didn’t know what I was feeling.  I had never really paid much attention to it.  I had ever even really thought about it.  I assumed that I could easily identify my emotions and during those times in which they remained vague and out of reach, I didn’t even really think about it.

Once I discovered that I do indeed have an established space on the Asperger’s/autism spectrum, however, that house of emotional cards began to slip.

In my early research nearly a year ago, I did what most of us newly-discovered Aspie/autistic people do: I burned up Google.  Like most of us, I searched for traits first.  I was trying to discern whether…

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Autistic with attitude – how our thinking shapes our life

This is so true – for me, anyway – that I could have written it… fake it til you make it is my ‘keep going’ mantra ☺

jeanettepurkis

Twenty or so years ago I was very unwell, in a dark place. I hated myself and wanted no part in the future, A psychiatric nurse set me what was then an impossible task. She asked me to write down five pages about my ultimate goal and the steps I would take to achieve it. The is actually quite a useful strategy for some people who are depressed but to me it was an unattainable task. I didn’t even have a positive goal – most of my thoughts on the future centred around me not being in it.  The five pages lay blank and the nurse had to rethink her approach to encouraging me to be a bit more positive and future-focussed.

Fast forward twenty years and I am in a bad space again. Mood issues, some pretty odd experiences that my history tells me relate to psychotic illness –…

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They thought I was lazy…when I was just actually autistic

As someone called lazy, not paying attention (ouch, it’s too sharp) and well beyond repetition here, this rings a bell (sigh). Particularly when a teenager. Thank goodness for moving to uni… 😊

the silent wave

One of my father’s Pearls of Wisdom was that “excuses are for losers”.  Although I find myself agreeing with that statement fairly often, I’m (very) well aware that humans are, well, human, and that we have our limitations.  This is especially true for people on the Asperger’s/autism spectrum.

What complicates matters is that our limitations are different for each of us.  What complicates matters more is that our limitations may change from day to day; what we could accomplish yesterday, we may not be able to do today.  And what makes the situation even worse is that some of those limitations may be invisible, and thus, unknown or unrealized.  This, too, especially true for Aspie/autistic people.

On the surface, we may appear able-bodied and of capable intelligence.

And yet…there are times when our limitations get in the way of something we want or need to do.  We get frustrated with…

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Face it! #prosopagnosia #autism.

I’ve walked past my son in the playground… there, said it. 😐 love him to pieces too!

The other side

IMG_2606I’ll put it out there – I’ve had a very challenging time of it recently.

It’s a funny thing finding out you’re autistic late in life. I still sometimes wake up in surprise at my ‘newfound’ situation – and lately find myself astonished at some random moment in my day when my autism is revealed to me as such.

I thought these ‘quirks’ were just me – and they are. But they are also autism. These are the ways in which being me are autistic. It’s quite glorious and freeing – but I also get to grapple with how disabled I can be in many situations, particularly interpersonal ones.

The other day I stumbled on a new old friend – prosopagnosia – a form of face blindness. I can actually recognise faces and can be remarkably good at remembering where I know a face from (once I rolodex and pin…

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#Autism Eclipse – The Dark Side of Passing

From a very early age many of us are taught / cajoled / punished / intimidated and ordered to ‘be normal’, listen, keep still, stop fidgeting, sit up straight, be polite, accept what is expected and to believe what we are told: that ‘black is white’ and that we cannot (should not) trust our instincts, experience (interpretations of), feelings or beliefs. This is gaslighting. Probably not done to cause harm, but out of fear that we will forever be outsiders / picked on / under-valued and unsafe if we don’t conform as children and throughout life. The message is drilled in so deeply that it’s hard to start unpacking what is our authentic selves and what is (essentially) brainwashing. Particularly when not diagnosed / realised until womanhood. It’s a long, difficult but worthwhile road to self-knowledge and self-belief to understand it all and move forward…

My Autistic Dance

Hiding

A Facebook post earlier got me thinking about the effort we expend in passing as non-autistic. The lengths we go to to conform. And what that costs us.

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The Four Social Rules every Autistic Person needs to Learn

Autism and expectations

Trigger warning – although this post doesn’t mention any detail of abuse, it is about the dangers of teaching someone not to trust in their right to say no

From a young age I was taught three things:-

  • The messages I get from my body are wrong
  • Not wanting to be touched is wrong
  • That I must override these feelings to be accepted

From encouraging an autistic child to give up a harmless stim (which may be helping them to cope with negative sensory information), to telling them that eye-contact doesn’t hurt (when it does translate to pain for some), or that hugs are pleasant physical contact (when they may be too much sensory information all at once) or that labels aren’t painful (when the feeling of being clawed at may be very real), navigating what will be believed as real, and what will be dismissed as silly or attention-seeking…

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