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…
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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Autism is big and messy and confusing, and no-one really understands it. It’s difficult to make a good summary and description of autistic traits, because generally no-one can agree on what autism actually is. But even taking that into account, I’ve never read a satisfactory article or leaflet summarising and describing autistic traits. Every description I’ve ever read suffered from at least one of these problems:
- Wrongly weighted. So many descriptions of autism written by neurotypical people focus completely on social traits. Often autism is described as an entirely social thing, and any other differences are considered incidental if they’re mentioned at all.
- Vague. The “triad of impairments” is the worst offender here. It divides social traits arbitrarily into “interaction”, “communication”, and “imagination”, but there is absolutely no clear distinction between those categories. They’re meaningless and useless divisions that don’t remotely simplify the description, and so they serve no useful purpose…
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I loved the programme and was determined to watch with open head and heart, but these points do seem to be true… Annie ☺
Review of this BBC documentary about the wildlife presenter Chris Packham:https://www.bbc.co.uk/iplayer/episode/b09b1zbb/chris-packham-aspergers-and-me?suggid=b09b1zbb
The Good Stuff
- Chris Packham used his great TV presenting chops to make this an autism-led show. He was engaging, thoughtful, articulate and funny. He showed those who doubt, that autistic people can be these things and was allowed to take centre stage as an authority on his own experience and not a victim.
- He highlighted the sensory issues of autism when he described the “Hyper-reality” of seeing trees, and pointed out how distracting the school and office environments he visited were.
- He provided a rare, mainstream criticism of ABA and put up a good case for it being counter-productive and cruel.
- But he sensitively acknowledged how some parents of autistic children are desperate for a cure and can be exploited.
- The show was beautifully shot and put together, and the reconstructions of his past were done really well…
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Yes! how does our Labour Party Autism Neurodiversity Manifesto fit for this purpose?
Until very recently, the prevailing view in society has been that autistic people are incapable of doing much at all and needed even the most basic decisions made on our behalf. Ideas of Autistic Pride and Neurodiversity would have seemed almost universally preposterous until quite recently. Virtually all the discourse and thinking on autistic people was told by neurotypical people. This is the background which still informs a lot of people’s thinking in our current world.
Along with countless autistic friends and colleagues and neurotypical allies, I stand against that view. I see that autism is more a difference than a a series of inherent deficits Many of the challenges we face are not intrinsically related to our autism but to our experiences intersecting with and trying to navigate what is often a very hostile world. We hear the stories of bullying, violence and victimisation and horribly they continue.
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So What is that – Dyspraxia.
It’s not‘dyslexia spelled wrong’ and it’s not ‘just another label. It’s dyspraxia and it affects between 5 and 10% of the UK’s population, with exact numbers varying. Diagnosis in itself can be a battle: girls and women are less often diagnosed, and diagnosis happens most often either in childhood, or later on at university.
Many blogs have written their own lists of symptoms; and that’s important. Personally; I think this sums up as succinctly as possible what they often are. This is the most extensive description of symptoms I can find:
But even this isn’t all. Plenty of people can have fewer symptoms more severely, or almost all of them at a lower level. Some people might even doubt they’re dyspraxic at all; with symptoms commonly becoming worse on different days and in different situations. With this in mind I’m going…
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I’m still a #Shutdowner 🙃
Many children with an autism spectrum disorder or with sensory processing disorders can experience sensory overload, which in turn can lead to meltdowns and shut downs. I’m going to try and explain how this works by putting you in the shoes of one of these children on a normal school day.
Imagine you are sat in a classroom. Your ears are over sensitive so the sounds you hear are extra loud and noticeable, some even hurt. You can hear the buzz of the artificial lights. You can hear the noise of children talking, giggling, breathing, sneezing. You can hear the scrape of each pencil as it moves across the paper and the dripping tap behind you.
Now imagine you have sensitive eyes. The bright artificial lights are hurting your head and you are seeing too many things. There are colours everywhere, work all over the walls, people everywhere you look.
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The other day something happened to me which I doubt many other people ever experience. I had an epiphany about employment and was very happy about it. Employment is one of the things I am asked to speak about quite a lot. In 2014 I wrote an activity-based book to help autistic teens and young adults build their confidence and knowledge around employment to help them find work when the right time comes. Supporting other autistic people to find suitable employment and build their skills around managing at work is a great motivator for my work in the autism community. I love talking about employment and have spoken to thousands of people about autism and work over the past few years. I pride myself on being quite good at talking about employment and autism. That is until the other day when I identified a significant gap in my approach.
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