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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'.)
Although that is starting to change, these changes tend to be superficial. Researchers are throwing in new words like 'neurodiverse', and autism organisations have latched onto the term 'acceptance' and the use of rainbows and lemniscates (often ALONG with hated symbols).
It doesn't mean that they are open to research requests from autistic people.
It took me a decade to find out that most autism research is actually not designed to benefit autistic people at all, not even in a patronising paternalistic way.
I guess it's because I am autistic that it took me so long to figure out.
The really big-budget research are about enriching industries whilst satisfying ableist ideologies -- the multibillion dollar 'behavioural health' industry and the pharmaceutical industry being among those industries.
I am not anti-pills. But with Johnson & Johnson's fines relating to the marketing of Risperdal exceed 8 billion dollars to date - yes, I meant billion, not million - you've got to face that we're not just talking about Big Pharma conspiracy woo, but about serial crimes.
For what it's worth, here's a full online BOOK about this, published by the Huffington Post, although it precedes the latest spate of fines.
The leaders of some pharmaceutical companies are undeterred by being caught out. There's no shame. https://highline.huffingtonpost.com/miracleindustry/americas-most-admired-lawbreaker/
The leaders of some pharmaceutical companies are undeterred by being caught out. There's no shame. https://highline.huffingtonpost.com/miracleindustry/americas-most-admired-lawbreaker/
Most undergrad autism research that I have seen is also useless rubbish, and that's mostly not the fault of the starry-eyed well-intended researcher, but of the systems and the environment which define and confine that research.
Wasted hours, wasted paper, wasted talent, useless topics, goals trimmed and trashed and transformed to meet requirements that make no sense to the people being researched. The result is a publication. A degree. Not a changed life for the lab rats.
I used to ask researchers, "What must autistic people do to get their research requests to the top of the autism research agenda?"
Although they never gave me a proper answer, I did eventually figure it out a few days ago whilst reading a thread on the fallacies which preserve systemic racism.
The EXPERIENCE of being a White autist in a world dominated by non-autistic people is not comparable to being Black in a world dominated by White privilege and institutional racism.
However,...
However,...
There is a lesson to be learned about why trying to achieve equality and justice based on "merit" doesn't work.
Black people can behave as nicely as possible, protest by kneeling instead of smashing things, dress like White people and put on the accent, study super hard to attain a PhD in a third language, and it's still all within a system of power designed to serve White privilege.
I tried to become a researcher because researchers weren't doing the job I wanted them to do, and I couldn't sustain it.
I realised last week that I shouldn't have even bothered.
The problem is really so simple and banal.
It's about power.
All this is simply about power.
I was trying to prove something in an area outside my realm of competence, and I would never have been good enough.
The problem is really so simple and banal.
It's about power.
All this is simply about power.
I was trying to prove something in an area outside my realm of competence, and I would never have been good enough.
So much of what people do is to try to gain power in situations where the odds are stacked against them.
Autism conferences are exhausting for most autistic people. It's not because of the sensory stuff. They think it's because of the sensory stuff.
It's because many of us (we who are supposed to have no empathy, the ones who allegedly can't read the mind in the eye) can actually feel what They are thinking about us, and we hear what they are saying about autistic people from the podium and in posters, and it's horrible.
And if we privately have a meltdown that night back at the guest house, it's exhausting. And if we have a very obvious meltdown at the conference centre, it's both exhausting and embarassing. And if we DON'T have a meltdown, if we politely gaslight ourselves, it's even worse.
Autistic researchers, the ones who actually formally publish stuff, feel this too. The odds are stacked against them. There are barriers to entry, barriers to staying in. There are rules designed for non-autistic people.
You can get disability accommodations if you're lucky, but that doesn't mean that the goals of the research and the institution and the funders are really directed at human rights.
They may entertain your silly little autistic opinions study, but that's not their main focus. You're there for the diversity count.
Maybe when I asked, "What must autistic people do to get autistic priorities to the top of the autism research agenda?" people weren't able to articulate the answer because they are so used to wrapping things up in polite talk that they couldn't formulate it even for themselves.
I am pretty sure I know the answer now, though.
The question is, "What must autistic people do to get autistic priorities to the top of the autism research agenda?"
And the answer is, "Honey, you gotta get power."
The question is, "What must autistic people do to get autistic priorities to the top of the autism research agenda?"
And the answer is, "Honey, you gotta get power."
It's not about how, it's about what.
I thought it was about how.
I thought it was about how.
I have rejected so many nominations to serve on the board of this and that autism thing, and I have turned them all down, every single one, for nearly a decade now. At least I knew that those things are meaningless, they simply endorse the system.
Looking in from the sidelines at the INSAR politics, with talk of a schism between the biologists and the psychologists, I see the psychologists playing up to autistic people more often than do the biologists, and a lot of it seems to be simply about who empowers whom.
The biologists don't need autistic people to like them, thank them, promote them or agree with them. They don't get paid by autistic people, and metabolic pathways are not a matter of 'lived experience versus what therapists say'.
If Roche says, "Develop a drug that increases eye contact," you do as you're told.
If autistic people want that money to be spent on something else, that is really far away from what you care about, because what autistic people are going to pay you to do anything different?
Your power is in your vocabulary: "The activity of mTOR and the MAPK pathways, key regulators of synaptogenesis and protein synthesis, suggest that components of protein synthesis signalling pathways might constitute a molecular signature of severity in autism spectrum disorder."
You now know something about the lab rats which the rats do not know about themselves. With your wealth of knowledge, you have purchased your own conscience.
It is with immense effort that autistic researchers are crawling their way through the barriers to entry to be accepted as legit subject experts at conferences, rather than just as self-narrating zoo exhibits.
For many, it isn't because they love academia and feel great to be there. It's because they care about other autistic people's lives. It's a sacrifice.
The biggest cop-out excuse among the biggest jerks in research is that they care deeply about the 'severe' cases.
No, they don't, they demonstrably do not care about the rights of autistic people with high support needs.
No, they don't, they demonstrably do not care about the rights of autistic people with high support needs.
The people in this thread are non-speaking. Many have problems regulating their behaviour. Some are incontinent. Some have regular seizures, and eating difficulties.
There are plenty of researchers who pretend to care about people like these. https://twitter.com/ekverstania/status/1101777600903610370
There are plenty of researchers who pretend to care about people like these. https://twitter.com/ekverstania/status/1101777600903610370
But not only do they not listen to what these people say, they actually work super-hard to make these people shut up. https://twitter.com/ekverstania/status/1165593126700036096
The vandals who did this dirty work were publicly encouraged and praised by one of the world's most famous autism researchers. And he's not the only one who tries really hard to discredit what non-speakers say.
You can silence autistic people... https://twitter.com/ekverstania/status/1189662265760505858
...and in spite of this, you can still get awards for your contribution to understanding and policy. Because the people who are giving you the awards are not the ones you are silencing. https://www.news.uct.ac.za/article/-2018-06-27-two-international-awards-for-uct-autism-research
I understand that it must be devastating to face the fact that you have spent your whole career working against the very people you think you care about, and that the easiest way to keep your power is to deny their agency. http://idoinautismland.com/?p=473
So. We have a problem with some of the people in power.
But do you know who we also have a problem with? The people who give them a platform.
But do you know who we also have a problem with? The people who give them a platform.
Who are you asking to speak at your conference? Who wrote the foreword to your book? Who are you proud to know? Why THOSE people? How do they empower you, and how do you empower them?
Who excites you? What excites you? How does your excitement underscore their power?
See, we don't HAVE to go to the White House, the ivory tower, the international conference, or whatever that place of power is. Being in a place of power doesn't necessarily empower you or those you care about.
Here's an autism researcher who focuses on things which concern many nonspeaking autistic people.
Her name is Elizabeth Torres, and she's not going to the proverbial White House of autism conferences.
http://www.thinkingautismguide.com/2019/01/elizabeth-torres-on-autistic-neuromotor.html
Her name is Elizabeth Torres, and she's not going to the proverbial White House of autism conferences.
http://www.thinkingautismguide.com/2019/01/elizabeth-torres-on-autistic-neuromotor.html
So, what are some of the things that autistic people want, that research could help them attain?
For one, they want to be believed. https://twitter.com/ekverstania/status/1126391600194707456?s=19
For one, they want to be believed. https://twitter.com/ekverstania/status/1126391600194707456?s=19
Here's a study to help with that. https://jaswallab.wordpress.com/summary-and-faqs/
Beware: Some organisations and researchers will be very nice to you, to get your cooperation, so that they don't have to take direction from autistic people. If you don't go along with their game, you will feel guilty, because after all, they are being so niiiice.
And here's your annual reminder that @autistica is one of the organisations that will co-opt autistic people to promote them and endorse them while straight up lying to you and throwing you away to die when you have served your purpose. (Yes, die.)
You will find autistic people who will tell you that Autistica treated them with the utmost respect and dignity, because they were not the ones who went through daily risk of death while the truth was hidden in plain sight.
The nice researcher who approaches you to take part in her survey on an autism topic she's passionate about will try to persuade YOU to care about this topic so that you feel guilty about thinking that there are a hundred more important things that could have been studied.
If you are autistic or the parent of an autistic child, this cycle of them deciding what gets studied won't change while you remain compliant and willingly participate and share their studies with your friends.
If you keep accepting nonparticipation and tokenism in terms of the goals, then you are telling them that their system is OK, that you are happy for their research priorities to be the ones that get funded. They want you to do that and will be nice to you.
https://citizenshandbook.org/arnsteinsladder.html
https://citizenshandbook.org/arnsteinsladder.html
If you question them for not having autistic people involved in setting goals and policies in respect of matters such as education and therapy, you will get pushback. They need you to trust them. They want you to shut up about the abuse they perpetuate. https://twitter.com/AnnMemmott/status/1265387005640429570?s=19
You will be the crazy one. You will be gaslighted. They will come out calm and in control.
Unless...
Unless parents of autistic children are regularly and publicly saying that autism research and policy that is not guided by autistic people is unacceptable.
Unless...
Unless parents of autistic children are regularly and publicly saying that autism research and policy that is not guided by autistic people is unacceptable.
People often forget that parents of autistic children may themselves be autistic.
Many researchers think they can rely on the communication gap between parents and autists so that with the endorsement and allyship of ableist parents (especially parents of nonspeaking children) they don't have to listen to noncompliant autistic people.
They are wrong.
They are wrong.
One of the reasons why they are wrong is that this is not actually such a big gap everywhere. Non-autistic parents of significantly disabled children are increasingly reading what disabled adults have to say.
The significant divide is not actually between autistic and non-autistic people, but between those who seek to dismantle ableism and those who want to maintain the status quo.
This brings us to a unifying, collaboration agreement: the #CRPD.
Most countries have signed the CRPD, although I suspect that many leaders probably don't realise what they have agreed to do!
Most countries have signed the CRPD, although I suspect that many leaders probably don't realise what they have agreed to do!
But...
We can change that and start calling organisations and individuals to account by pointing out CRPD violations everywhere, and demanding that they be addressed.
The #CRPD is founded on the principle of #NothingAboutUsWithoutUs. You can read it online, and there is a great training guide available in multiple formats. Disability activists worldwide should know what is in the CRPD. So should researchers purporting to serve disabled people.
So, what does the #CRPD say?
Here's an example of one of the Articles of the CRPD which I've posted on my blog, with a link to the original on the United Nations Web site.
("States parties" means countries which signed the CRPD.) https://tania.co.za/crpd-freedom-of-expression-and-opinion/
Here's an example of one of the Articles of the CRPD which I've posted on my blog, with a link to the original on the United Nations Web site.
("States parties" means countries which signed the CRPD.) https://tania.co.za/crpd-freedom-of-expression-and-opinion/
Now, as I continue to talk about the CRPD over the next few weeks, you need to be aware that CRPD violations are so common that perpetrators are typically unaware that they are acting in violation of an international convention.
Also, like many other human rights violations, #CRPD violations tend to be systemic. That means it's not just one naughty researcher or corrupt institution. CRPD violations are often pervasive throughout a profession, an industry, a government, a society.
So, when I say that you can't do autism research without being led by autistic people's research priorities because that violates the #CRPD, I am not saying that it doesn't happen. It happens all the time. Everyone involved in process plays a part in the violations.
The whole of society has been designed in ways that violate the #CRPD. Were it not so, people wouldn't have bothered to compile the CRPD.
Now, of course we want the whole of society to change, but here's the problem...
Most people in society think that parents of disabled people, or people who work with disabled people, or organisations which do research on disabilities, are well positioned to decide on policies in respect of those disabilities.
Even worse, many of those parents, organisational representatives and researchers think so too!
And because of their knowledge, proximity and power over disabled people, they create the barrier to disabled people gaining access to their rights.
And because of their knowledge, proximity and power over disabled people, they create the barrier to disabled people gaining access to their rights.
Of course, they are also well positioned to be a conduit rather than a barrier, helping disabled people to access their rights; and many non-disabled individuals do act in this capacity.
But the systems are not in place to make this the norm, nor do the systems support the removal of the barrier and the conduit to empower disabled people who might otherwise have done so to speak for themselves directly.
So, researchers and the institutions that support their work, including academic journals, need to be called out on #CRPD violations all the time.
If disabled people don't go on and on and on about the #CRPD, who is going to do it?
Who will respect the CRPD if we don't respect it ourselves and insist on its implementation, and demand that those who violate it be held to account?
Who will respect the CRPD if we don't respect it ourselves and insist on its implementation, and demand that those who violate it be held to account?
No organisation relating to a disability is representative of people with that disability if more than half of their board (or equivalent) don't even have that disability! http://docstore.ohchr.org/SelfServices/FilesHandler.ashx?enc=6QkG1d/PPRiCAqhKb7yhsnbHatvuFkZ%2Bt93Y3D%2Baa2pjFYzWLBu0vA%2BBr7QovZhbuyqzjDN0plweYI46WXrJJ6aB3Mx4y/spT%2BQrY5K2mKse5zjo%2BfvBDVu%2B42R9iK1p
A word to parents of autistic children who have high support needs:...
If you say someone like me who can talk and drive can't speak on behalf of your child because I am not like your child, you are absolutely right—up to a point; and by implication if YOU don't have the exact same high support needs, then you can't speak on their behalf either.
Fortunately, there are ways to work together effectively to ensure that your child gets the representation they deserve.
Let's scratch the surface first. Your non-speaking son has extreme reactions to small sounds? I used to have hyperacusis, and many of my friends struggle with this too.
We want researchers to focus on what we've learned and to make it work for others. We want research into ways of disseminating this learning among healthcare professionals to relieve the suffering of millions of people. We have a common goal. https://tania.co.za/sensory-overload-updates/
But wait, there's more. See, a lot of research that has been done even without considering autistic people's own research priorities has yielded potentially useful results. But because autistic people's goals were not considered, much of this work is not being put to good use.
Many autistic people would like to see the findings of medical research turned into treatments they can access when they go to the doctor or hospital. As a parent of an autistic child, you probably want the same for your child. So, we have a common goal.
But the healthcare industry, and public health in general, is not designed with the #CRPD in mind. So, we suffer, your child suffers, we all suffer because people don't care to listen to us. https://tania.co.za/being-believed-when-youre-autistic-and-sick/
And they don't listen to YOU, because they have written off your non-speaking child, and they think the world would be a better place without her; and they think it would probably be the best for her too if she dies, because what kind of life is that to be such a burden?
So here's where it becomes super-important for us to work together. Because I shouldn't be speaking for your child and nor should you. If at all possible -- and for many it IS possible -- your child should be speaking for herself, as per articles 9 and 21. https://twitter.com/ekverstania/status/1108032007316090882
Remember the researchers I mentioned who silence the non-speaking autistic people who've invested years into being able to communicate via AAC? Why are there newspaper articles praising people who commit crimes against humanity? Why aren't we stripping them of their titles?
So, maybe you would prefer not to exhaust yourself fighting that war. But there's another way. https://tania.co.za/advocacy-culture-war/
You can also fight by planting. Plant the words of non-speaking people every day wherever you go. Share the words of the wise, and share the mundane. https://twitter.com/ekverstania/status/1119062249019252736
Share the bad things. https://twitter.com/ekverstania/status/1097430404322213888
Share the good things. https://twitter.com/ekverstania/status/1183409890175397888
Share the lessons that non-speaking autistic people teach us about disability rights advocacy. https://twitter.com/ekverstania/status/1208121664011210752
Share what non-speaking autistic people say about ableism, and how it makes them feel. https://twitter.com/ekverstania/status/1200416258811977728
Share what non-speaking autistic people say about everything else in the world, beyond their own disability. https://twitter.com/ekverstania/status/1105557877887037444
Share their poetry. https://twitter.com/ekverstania/status/1101105578233851904
And as you do so, share a call to action.
Communication is a human right.
Call on everyone in the autism industry to focus on communication first.
Communication is a human right.
Call on everyone in the autism industry to focus on communication first.
But wait: ask autistic people who have struggled to get to the point of independent communication what helped them along the way.
Dare to ask.
Dare to read.
Dare to ask.
Dare to read.
If support for communication is not going to be a top focus area for autism research and therapy, we seriously need to question whatever model is motivating the research.
This doesn't mean everyone in the autism industry now needs to be a communication specialist. Other areas of advocacy are important too.
Here are my own four focus areas from last year (and I have added a fifth since then). https://tania.co.za/4-focus-areas-for-autistic-advocacy-video-series/
Here are my own four focus areas from last year (and I have added a fifth since then). https://tania.co.za/4-focus-areas-for-autistic-advocacy-video-series/
But we need to focus on communication first.
Now that there have been some responses to this thread, I would like to incorporate some of them, as they raise important caveats.
For example, some research organisations will straight up lie about their goals, values, strategic allegiances and about the projects they are involved in, because they know many autistic people won't like what they are into. @Autistica is one of them.
This is not speculation. Autistica admitted that the lies were strategic and deliberate, and that they knew that people would be harmed once they learned that they had been betrayed.
@Autistica used autistic people to recruit other autists for their research studies, denying that they still collaborate with the hated organisation @autismspeaks in any way.
At the very same time, they were secretly collaborating in setting up the @Aims2Trials consortium.
At the very same time, they were secretly collaborating in setting up the @Aims2Trials consortium.
AIMS-2 is the most ambitious, most expensive research project in the history of the planet. One of the intended outcomes is to empower the pharmaceutical company @Roche to produce drugs to make autistic people socialise in non-autistic ways.
Thread continues here: https://twitter.com/ekverstania/status/1274668022242971648?s=19
Some 25-40% of autistic people have little or no speech.
Given that they are among the most vulnerable people in the population, research aimed at helping them should surely be a priority.
What percentage of autism research is in response to requests from nonspeakers?
Given that they are among the most vulnerable people in the population, research aimed at helping them should surely be a priority.
What percentage of autism research is in response to requests from nonspeakers?
I'm asking you, researchers and funders.
What steps must nonspeaking autistic people take to get their own research requests into the top of the autism research agenda?
What steps must nonspeaking autistic people take to get their own research requests into the top of the autism research agenda?
I'm talking to you, autism researchers and funders.
What studies have you competed so far in response to requests from nonspeaking autists?
What studies have you competed so far in response to requests from nonspeaking autists?
Dear autism research organisation
What percentage of your projects were requested by #ActuallyAutistic people?
Of those projects, what proportion were requested by nonspeakers?
What percentage of your research budget goes to projects requested by non-autistic people?
What percentage of your projects were requested by #ActuallyAutistic people?
Of those projects, what proportion were requested by nonspeakers?
What percentage of your research budget goes to projects requested by non-autistic people?
