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From Burden To Badass: How I Became An Activist & My First Vlog (circa 2014) | Eve Reiland

International Badass Activists


My body was a coffin after the onset of Psychogenic Non-epileptic Seizures*, a mental condition, in 2010. It was a living breathing container for a dead person walking.

Consciousness came with unending electric pain zapping through my limbs, back, head and left me exhausted and unable to do the basics of life — like get out of bed. All attempts at self-care needed the help of another person to support, carry or protect my head if I hit the ground to shake, rattle and roll. A slight breeze on my skin would be enough to trigger the hell.

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Eve Reiland, 2013

At this point, time had zero meaning and amnesia masked my memories — including the birth of my daughter. She was 18-months-old when I triggered. I’m told I was in bed for the majority of two years and lost a lot of hair. Because my condition was…

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Bullying in the #ActuallyAutistic Community – YouTube

International Badass Activists

Published on Jun 15, 2018

I am greatly disappointed that so many autistic people waste energy fighting and tearing each other down, instead of elevating each other. A little kindness and compassion can go a long way. United we are stronger. Divided we fall. Check me out all over the web: http://www.neurodivergentrebel.com http://www.facebook.com/NeurodivergentRebel http://www.twitter.com/NeuroRebel http://www.instagram.com/NeurodivergentRebel For Vlogs & Daily RV living – http://www.WildnFreeRV.blog http://www.facebook.com/WildnFreeRV http://www.instagram.com/WildnFreeRV http://www.twitter.com/WildnFreeRV Music – http://www.jeremybootheandthewanderer…

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‘I’m not being rude but I have no idea who you are!’ – Thoughts on Prosopagnosia

jeanettepurkis

The title of this post is something I have said – or thought – on many, many occasions in my almost 44 years on this Earth. Most people have an innate ability to tell one human being from another. If they meet someone then they remember what the person looks like most of the time. I do not. Most human faces blur into each other and I cannot remember people I see all the time, including work colleagues and family members. When I was a toddler my mum and brother and I went overseas and left my dad behind. When we returned three months later I had no idea who this scary guy with a beard was and why he seemed to know my mum, brother and me really well! I spent my childhood, teenage and young adult years thinking that may inability to recognise human faces was unique to…

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Autism, masking and ageing. A personal view.

The other side

 

This post  is about both ageing and masking. Masking can be a difficult subject as some autistics can’t mask their autism, and those of us who can often wish we didn’t have to, and yet we may depend on masking to get by. Masking overall is not really a choice though in some circumstances we can chose to unmask ourselves. We may also just be unmasked by circumstances – and this can be deeply confusing and humiliating. It is both a relative privilege and a survival strategy. Yet however important masking can be in mediating aspects of autistic challenge in neuro-normative spaces it is also pernicious in it’s effects on us.

Revealing autism and unmasking are not entirely the same thing in my view – and this is worth pointing out. One of the difficulties we face is that to talk about being autistic we must often use our…

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Respecting difference: Autistic people aren’t ‘speaking neurotypical’

jeanettepurkis

In the course of a presentation today I did something I have never done before – I spoke to a former ABA therapist. MY heart sank as she eagerly said ‘What do you think about ABA?’ For anyone who hasn’t come across it before, ABA or Applied Behaviour Analysis is an intervention used on autistic kids. It is essentially premised on making children ‘less autistic’ and uses a system of rewards and in many cases punishments to promote compliance. Almost every autistic advocate you will meet will say how damaging ABA is, doing things like forcing kids to make eye contact and coming from the premise that autistic reality is ‘wrong’ and in need of fixing. There is growing evidence as autistics who were subjected to ABA as kids grow older, that it causes trauma. ABA pretty much stands against everything I believe in and strive for. So being confronted…

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Our Recent Study on the Overlap between Autism and Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorders

Science Over a Cuppa

Although much of my research efforts to date have focused on the genetics of autism, over the last year or so I’ve turned a significant part of my attention to a particular group of connective tissue disorders (CTD) and their overlap with the autism spectrum. The CTDs I’m referring to are known as Ehlers-Danlos Syndrome (EDS) and the closely-related Hypermobility Spectrum Disorders (HSD).

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To be frank, much of my interest in this area has stemmed from my own experience and recent diagnosis with an HSD, which has put me in contact with a number of fantastic online support communities on Facebook for EDS/HSD and its comorbid issues like postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS). In coming to know these communities and learning from their vast stores of knowledge, I also began to notice that there was a lot of talk about autism on…

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Evidence of increased PTSD symptoms in… (PDF Download Available)

“Findings – Nearlyhalf(46percent)oftheABA-exposedrespondentsmetthediagnosticthresholdforPTSD, andextremelevelsofseveritywererecordedin47percentoftheaffectedsubgroup.Respondentsofallages whowereexposedtoABAwere86percentmorelikelytomeetthePTSDcriteriathanrespondentswhowere not exposed to ABA. Adults and children both had increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were exposed to ABA. Both adults and children without ABA exposure had a 72 percent chance of reporting no PTSS (see Figure 1). At the time of the study, 41 percent of the caregivers reported using ABA-based interventions. “

International Badass Activists

Full-Text Paper (PDF): Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis

Source: Evidence of increased PTSD symptoms in… (PDF Download Available)

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I won’t be the ‘tame autistic’ – The need for real Autistic involvement not just ticking a box

jeanettepurkis

I was asked to speak at an autism event last year. The organisation hosting it told me they have one presentation on autism each year and it was a great privilege to be asked to speak there. I prepared my talk and travelled to the town the talk was in. The neurotypical organiser asked me something I have never been asked before and hope never to be again. They said ‘so what are you going to wear tomorrow Jeanette?’ I was very tempted to say I would be naked due to my respect and love for nature but restrained myself. At the talk the same person asked my how to ‘manage militant politically correct autism activists?’ I suggested that listening to them was probably the best idea given the way things are now and that those who attack ‘political correctness’ are more of a worry as they are essentially fighting…

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70 of the absolute BEST #ActuallyAutistic blog posts I’ve ever read (300th post)

the silent wave

In the very first post on this blog and on my currently-pinned Twitter tweet, I state that “The Silent Wave”, on a grander scale, is not about me; it’s about all of us (especially those of us who are either recently diagnosed or otherwise adult-diagnosed on the Asperger’s/autism spectrum), as we find ourselves and chart a new route through the waters of life.

In my attempt to live up to that statement not just by saying it, but by following through with evidential action, I’ve tried to start a little informal tradition in which, every hundredth post or so, I write a post that hands over the megaphone from my loud mouth to the well-deserving voices.  These commemorative posts have actually become my favorite ones to write!

Today, for my 300th post, I’d like to celebrate (oh god, there’s so much to celebrate–the community, the feedback, the cohesion, the variance…

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