I am encouraging a boycott of autism research participation by autists and parents of autistic children, unless autistic people are involved in setting the goals of the studies. Don't participate just because it's about autism. The study design and ethics may be up to maggots.
People who participate in ethics committees are not necessarily trained in the #CRPD. In my experience, many of those people are clueless about the realities of human rights.
A simple example is that many of the supervisors and ethics people insist on researchers using person-first language in research papers, which is exactly what most autistic participants in English-speaking environments DON'T want. (This is, like, 'Autistic Culture 101'.)
Some months ago I shared a video of nonspeaking autistic author Lucy Blackman typing a conference speech. Today I am sharing Lucy's bio at the Brotherhood of the Wordless site. brotherhoodofthewordless.com/our-authors/lu…
My mother and I took more than two hours trying to sew a 3-layered mask from a 2-layer pattern.
We didn't finish.
Come 1 May, Cape Town is gonna have the largest number of fake niqabis the city has ever seen, thanks to modern women being klutzes at traditional skills.
IMPORTANT
Your mask is to protect OTHERS in case YOU are infected and you don't know it.
An infected person in an inferior mask (e.g. loose, single layer) places others at risk.
So if YOU want to be safe from others, you need to help THEM get access to good masks.
If you are sewing decent 3-layer masks for yourself, sew some for others and give them away for free. Encourage other people to do the same. To reduce the spread of the virus, we need to spread THIS idea virally. #Masks4All
I've figured something out. We don't necessarily another service organisation for autists in South Africa, although ALL the service organisations could do with massive improvement (and it doesn't all depend on funding increases).
We need a DISABILITY RIGHTS ORGANISATION.
We need this because existing service organisations are not equipped to deal with human rights violations and in particular, the nature of the abuse that many autistic children and adults experience at the hand of caregivers.
They are not well structured and equipped to lobby for change and they are DEFINITELY not geared towards prosecutions and victim placements.
With autistic pattern recognition, you often know what can be expected in world events, because you recognise the patterns. Then curiosity and confirmation bias makes you seek reinforcement. But it's all too awful, so it just remains theoretical, and when it actually happens...
You're still shocked like everyone else, even though you saw it coming.
I think I have reached the point where I am prepared to recognise that the bad things I saw coming since I was a child probably will happen in my lifetime after all -- and worse.
Because all the people who could really turn things around are not focusing on the reality that glaciers have melted, the poles are melting an entire continent is on fire and we are in the grip of a drought right here with animals dying daily, but we're talking about Boity's bum.
There’s no point anymore in trying to persuade them to care. All that remains now is to show those who do care that the ABAI is a despicable institution, and that membership and adherence to its code of ethics is merely a pact of honour among thieves. tania.co.za/global-autism-…
tell me you won't allow this to happen in your country. That you will fight against this torture being rolled out where you are. tania.co.za/aba-state-fund…
People say that in the autism industry, there’s “good ABA” and “bad ABA”, and one shouldn’t write off an entire profession based on a few bad apples. OK, so, let’s toss out a few bad apples so that we can get down to the good ones. tania.co.za/bad-aba-and-go…
[THREAD] I want to tell you about Spelling to Communicate, a method for non-speaking autistic communication that I helped to bring to South Africa along with Nicola Sowah (a speech & language therapist) and Luli Carillo (mother of non-speaking autist Leonardo).
Spelling to Communicate (S2C) teaches individuals with motor and sensory differences the purposeful motor skills necessary to spell to communicate. Motor skills progress along an increasingly complex hierarchy from pointing to letters to typing independently on a keyboard.
The goal is to achieve synchrony between cognition and motor.
@AOC And ban conversion therapy for use against autistic people, where it's called ABA and the US government sponsors it across the entire country. #ABAisAbuse#CRPD#DisabilityRights
@AOC Conversion therapy was turned mainstream first against gay people and then against vulnerable autistic children by Ivar Lovaas. There is still a nationwide multimillion dollar abuse industry sponsored by the US government, based on his work, and autistic people are the victims.
[THREAD] "If you’re not in the autism world and if you’re not in the world within that world of nonspeaking autistics, those who have historically (and quite noxiously) been labeled “low-functioning,” then you might not know about the current controversy involving Wikepedia."
"It has been erasing pages about prominent autistics who type, point, or write to communicate, insisting that such communication can’t be definitively attributed to these individuals."
"WikIpedia has now altered the page devoted to “Deej”
(@DeejMovie), the film that my son stars in, wrote, and co-produced, the film that won many awards, including a Peabody."
@Foster_Science@anomalapropos Apraxic people sometimes take a long time to develop purposeful motor skills, and even when they can communicate independently, they may have days when they need some help.
@Foster_Science@anomalapropos Some of us autists who can speak also have times when speech dries up and we need to flip over to AAC. Alyssa Hillary has written and lectured on this subject.
Nonspeakers are rarely the authors of their own narratives in academic journals. This article changes that, with nonspeakers Samuel Capozzi, Dillan Barmache and Emma Cladis giving their own direct accounts of mentoring for autistics by autistics. liebertpub.com/doi/10.1089/au…
Today I'm sharing a 2018 interview with nonspeaking autist Rhema of the Rhema's Hope blog, in which she gives advice to therapists about helping her and others like her with impulse control and other challenges associated with autism. rhemashope.wordpress.com/2018/03/28/rhe…
Childhood isn't only about preparing for adulthood, you officious ableist fools. And if the child is disabled, even preparing for adulthood should mean preparing to live effectively as a disabled adult, not learning to fake being non-disabled.
If you feel inspired to make a career in the autism industry, why aren't you #AskingAutistics about the many unmet needs? Why enter the fray of abusive therapists all vying to fan and cash in on parents' ableist fears?
Imagine you ran a therapy centre for women, and all your glowing testimonials and endorsements were from husbands, brothers, fathers and sons.
No actual women.
But your therapy is advertised as being 'evidence-based'.
There is something super-problematic about ABA therapists, who don't understand either autism or apraxia as it manifests in autistics, saying, "Behaviour is communication," and then trying to change that behaviour based on their assumption of what the behaviour is communicating.
Because not only do they often miss what the behaviour is communicating, but there may be many times (especially in those with apraxia) that the behaviour is NOT communication. At all. Even if there is laughter. Or screaming. Even if the behaviour contains words.
Here's something for you to check out if you thought all behaviour is communication.
Because you'd be wrong.
And if this blows your mind, then check out every link in that thread.
Jeepers, #ActuallyAutistic people, learn to recognise when some other autistic is having a meltdown on Twitter. How's your ability to reason through and resolve things mid-meltdown? Ja, me neither. So give the same consideration to them as you would want for yourself.
If you are convinced that you are right and you need to teach them your truth, know also that this won't be the other person's "most teachable moment"..
Also, think about who YOU have hurt during meltdowns. Some of those people were probably quite decent people, compared to the many jerks you could have chosen to hurt if meltdowns were premeditated.
Here's what I see in the lethargic response from most #ABAICon19 delegates towards the idea of condemning torture...
The ABAI leadership and conferencegoers actually don't care about human rights because they don't care about humans.
There's no point anymore in trying to persuade them to care. All that remains now is to show those who do care that the ABAI is a despicable institution, and that membership and adherence to its code of ethics is merely a pact of honour among thieves.
[THREAD] CW: Graphic descriptions of abuse, images of open sores, children crying.
Evidence of over 50,000 people being abused in Uganda. Adults and young children given bleach to drink. Unpaid independent #actuallyautistic investigator @fionapettit71 is threatened.
CW: Graphic descriptions of abuse, images of open sores, children crying.
[THREAD] 4 FOCUS AREAS FOR AUTISTIC ADVOCACY - VIDEOS
In this thread, I will be adding a series of six videos which I made (in a rush), providing an overview of the four main focus areas which I address in workshops, at conferences, in training events, and so on.
They are MY four focus areas for advocacy, which doesn't mean that they are THE priority areas which everyone else should have.
While you exclude both speaking and non-speaking autists from your decisions, you commit human rights abuses whether you realise it or not.
If people in the autism industry stopped violating the #CRPD, we would see:
- the end of harmful practices and substances masquerading as therapy and (ABA, Le Packing, MMS etc.)
- autistic people driving the priorities of autism research
- nonspeakers' access to communication
We have to stop excluding nonspeakers' inputs from these conversations.
Making them the excuse for not listening to autistic people who speak, while you pay ZERO attention to THEIR actual words means you respect neither group.
2 added to My Authors