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.
highline.huffingtonpost.com/miracleindustr…
The leaders of some pharmaceutical companies are undeterred by being caught out. There's no shame.
highline.huffingtonpost.com/miracleindustr…
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.
There are plenty of researchers who pretend to care about people like these.
But not only do they not listen to what these people say, they actually work super-hard to make these people shut up.
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...
...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. news.uct.ac.za/article/-2018-…
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. 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.
thinkingautismguide.com/2019/01/elizab…
Her name is Elizabeth Torres, and she's not going to the proverbial White House of autism conferences.
thinkingautismguide.com/2019/01/elizab…
So, what are some of the things that autistic people want, that research could help them attain?
For one, they want to be believed.
For one, they want to be believed.
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.
citizenshandbook.org/arnsteinsladde…
citizenshandbook.org/arnsteinsladde…
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.
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.) tania.co.za/crpd-freedom-o…
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.) tania.co.za/crpd-freedom-o…
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! docstore.ohchr.org/SelfServices/F…
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.
tania.co.za/sensory-overlo…
tania.co.za/sensory-overlo…
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.
tania.co.za/being-believed…
tania.co.za/being-believed…
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.
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. tania.co.za/advocacy-cultu…
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.
Share the bad things.
Share the good things.
Share the lessons that non-speaking autistic people teach us about disability rights advocacy.
Share what non-speaking autistic people say about ableism, and how it makes them feel.
Share what non-speaking autistic people say about everything else in the world, beyond their own disability.
Share their poetry.
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). tania.co.za/4-focus-areas-…
Here are my own four focus areas from last year (and I have added a fifth since then). tania.co.za/4-focus-areas-…
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.
Autistica got involved in AIMS-2 based on their rapport autistic people, which some of the other consortium member organisations were not so good at establishing.
Since some people working for Autistica were genuinely kind, it was easier to pull off the scam convincingly.
Since some people working for Autistica were genuinely kind, it was easier to pull off the scam convincingly.
Once the deal was done, the hapless autistic recruiters were tossed aside to die -- literally. For more than a year autistic people begged @Autistica for a contribution towards saving one of them from the suicidality resulting from the betrayal trauma (a medical condition).
@Autistica (which ironically also funds research into suicidality) refused, but offered to have a 'rational conversation' with the man, who was clearly no longer rational, but severely ill, having suffered nightmares and insomnia for so long.
So, there is a lesson to be learned here: even one study is designed by autistic people to meet autistic people's goals, it doesn't mean that the organisation behind it supports the #CRPD.
Research which autistic ask for may simply be part of an organisation's strategy to manage risk, drive PR, and boost recruitment.
They don't tell you they're working with commercial drug companies that want to treat your social skills rather than your connective tissue disorder, because you may not be keen on their goals.
The AIMS-2 trials also address some conditions which autistic people do care about, such as seizure disorders. Autistic people have been recruited to do the PR for Autistica around this research.
It is a common overall strategy of both institutional and personal abusers to placate their victims by magnanimously giving them things they need and want instead of allowing them agency. The victims become compliant because they feel guilty if they behave with ingratitude.
This is why the #CRPD is such an important convention when it comes to autism research. It establishes a set of principles and rules as a basis for policy, ultimately to be turned into enforceable regulations in governments and civil organisations.
Most (if not all) of the members of @AutismINSAR are from countries which have signed the #CRPD, so they are obliged to operate within its boundaries.
However...
However...
Many of these countries have been weak in their implementation of the #CRPD anyway, and some haven't even ratified it yet.
This means that although the #CRPD is an international treaty with direct bearing on their work, people working in the autism industry (as researchers, therapists, in advocacy, etc.) are not very clued up about it, and about how it should be driving the direction of their work.
One way in which we can improve this is by encouraging autism professionals and organisations to sign statements in support of the #CRPD.
The #CRPD applies to them anyway, whether they like it or not; but signing such a statement would indicate commitment to IMPLEMENT it through policy changes, changed structures and changed ways of working.
As I indicated earlier, just getting people to sign such a thing doesn't get you very far if they don't realise what the implications are and if they don't agree to be held to account.
The #CRPD Training Guide and various statements by the Committee are pretty helpful when it gets to spelling things out.
For example, as @soundcube pointed out, autism research focuses mainly on autism as something separate from autistic PEOPLE.
Even the preferred term which many autism researchers have for us ("persons with Autism Spectrum Disorders") emphasises this idea of separation and supports their excluding of actual autistic people from their direction-setting decisions.
If I am a cis man working in an organisation doing research on "Femaleness", I will probably feel a little less guilty about having excluded women from the organisation's governance and from decisions about topic choices than if I had said that I am studying "Women".
The #CRPD is founded on the principle of #NothingAboutUsWithoutUs AND IT SAYS SO.
This principle teaches that we can't just do research ABOUT autistic people without involving autistic people in the decision-making.
This principle teaches that we can't just do research ABOUT autistic people without involving autistic people in the decision-making.
Now, some autism organisations run by non-autistic people (including research organisations) do have autistic advisors or even an autistic board member here and there.
However, most of these still don't comply with the heart and soul or Articles of the #CRPD.
However, most of these still don't comply with the heart and soul or Articles of the #CRPD.
If we try to change things on the surface through rules and quotas, we're still not going to get to the heart and soul, and we are going to have a really hard time with people who are constantly trying to find workarounds to the new rules so they can keep doing the same thing.
The change that is needed is at the level of Paradigm.
donellameadows.org/archives/lever…
donellameadows.org/archives/lever…
On page 8 of the English accessible version of the #CRPD Training Guide (available as a pdf download here: un.org/development/de…), we learn about four approaches to disability:
the charity approach,
the medical approach,
the social approach, and
the human rights approach.
the charity approach,
the medical approach,
the social approach, and
the human rights approach.
The #CRPD is founded on the fourth one, the human rights approach.
Here is why this is significant:
It doesn't matter quite so much whether we think our autism is a difference or a disorder or a messy mixture of both.
What matters is that WE HAVE A HUMAN RIGHT TO BE HEARD.
Here is why this is significant:
It doesn't matter quite so much whether we think our autism is a difference or a disorder or a messy mixture of both.
What matters is that WE HAVE A HUMAN RIGHT TO BE HEARD.
We have a right to be heard when we tell the people in power what we need, and what works for us, and what doesn't work.
According to the principles of the #CRPD, ABA should be illegal. It is not a legitimate evidence-based therapy, because there isn't even ANECDOTAL evidence of widespread support for this therapy among the disabled people it purports to help.
In every country that has signed the #CRPD, ABA should be declared illegal for use without informed consent, and by implication, the punishment should be exceptionally harsh for people who use ABA against children who have no nuanced means of communication.
Communication is a human right, and the #CRPD recognises it as such.
The CRPD does not recognise the 'right' of the parent, researcher or therapist to do things which disabled people regard as torture. tania.co.za/crpd-article-1…
The CRPD does not recognise the 'right' of the parent, researcher or therapist to do things which disabled people regard as torture. tania.co.za/crpd-article-1…
Organisations and researchers who do NOT believe that their work should be done within the ambit of the #CRPD need to follow the steps set out by the United Nations.
Broadly speaking, this means they'd need to lobby for their country to withdraw from the #CRPD (there are actually psychiatrists in the UK who are trying to do this). Their government then needs to go through a formal process of withdrawal.
Most autism researchers probably won't want to do that.
It would mean facing activists with other disabilities head-on in a very blatant public battle against disability rights.
There is more to be gained professionally from working WITH disabled people than against them.
It would mean facing activists with other disabilities head-on in a very blatant public battle against disability rights.
There is more to be gained professionally from working WITH disabled people than against them.
Now, we need to go back to talking about the ball that gets kicked around in this game, the shield used to justify human rights violations and not-listening. Non-ally researchers keep going back and latching onto that one thing which they think legitimises their modus operandi.
They will kick that ball as far as hard as they can, as though the ball is something that cannot hear, feel or understand.
They will hold up the shield for all to see, as though the shield feels nothing, sees nothing, hears nothing.
They will hold up the shield for all to see, as though the shield feels nothing, sees nothing, hears nothing.
And they will say that they are only trying to get the ball to the goal, and surely that is the right place for the ball to be?
But they are the ones who set up the goalposts.
And they are the ones who decided that nonspeaking people cannot understand what they are saying, and cannot ever communicate in eloquent vocabulary, and so they can set their own goals for nonspeaking people and use them as a shield.
And their world would collapse -- or so they think, because they cannot bear to think of a world where they have a different role -- their world would collapse if it turned out that nonspeaking autistic people UNDERSTAND EVERYTHING.
We need to return to this bookmark later, to talk about protection for the rights of people with profound intellectual disabilities, but that is not what we are talking about now.
We are talking about autistic people who are capable of formulating and expressing a detailed personal perspective on what helps them and what doesn't, often in a very nuanced and sensitive manner, provided that they are given the means to do so.
If nonspeaking autistic people can understand what is being said about them, and if the words they have expressed are genuinely their own, then these people can no longer be used as an excuse for excluding autistic people from research goal formulation.
So, to ensure that nonspeakers can continue to fulfil that role of ball and shield, it is of the utmost importance for researchers to prove that they have no agency by discrediting the means they use to communicate.
Everything pivots on this. The researchers don't mind having you hang out on the side seats at their conferences (you won't understand most of what they're saying anyway, it's not designed for your benefit).
They mind when you want to take away their ball and tell them to listen to the people they are using as a shield.
The #Puppetgate protests against @allinarowplay were largely a waste of energy because the play was about a nonspeaking autistic person, and nobody, even the majority of autistic protesters, were focusing on what nonspeaking autists have to say.
Autistic activists who are able to speak fairly fluently and live more or less independently need to recognise that the autistic experience is different for people who don't have those capabilities.
"Accepting" nonspeakers is not enough.
We need to listen to their goals.
"Accepting" nonspeakers is not enough.
We need to listen to their goals.
Some of us are on a blurry line between these two worlds, while others are solidly on one side or the other.
Make no mistake, the autism professionals who don't want to listen to autistic people will fight tooth and nail to keep that line solid.
They will collect for themselves autistic allies like Yuval Leventhal, people who've had a bad experience with the neurodiversity crowd, who can be relied upon to kick around the football and keep up the shield -- in other words, to silence nonspeakers.
neuroclastic.com/2019/07/10/fc-…
neuroclastic.com/2019/07/10/fc-…
The Jaswal Lab study, though small, represents a significant crossroads in autism research because it forces autism researchers to face the cruelty of the choice which they continue to make if they keep using nonspeakers as their ball and shield.
Before I go back to the discussion of that study (I posted it earlier in the thread) I want to pause for a moment to talk about the psychology of the choice.
This letter to ASHA predates that study by about two years, and it speaks of cognitive dissonance and choosing to believe. But it's not about choosing to believe in the absence of evidence, it's about choosing to believe what you see with your own eyes.
growingkidstherapy.wordpress.com/2018/06/28/ope…
growingkidstherapy.wordpress.com/2018/06/28/ope…
When you're prone to confirmation bias, it's difficult to admit you were wrong.
When you invested a lifetime of work and earned money and fame based on a wrong premise, it's super difficult to admit you were wrong.
When you invested a lifetime of work and earned money and fame based on a wrong premise, it's super difficult to admit you were wrong.
And if on top of all that, admitting you were wrong means being left with your conscience telling you that what you supported and fueled was evil and destroyed good people's lives, then it's hugely difficult to face that you were wrong.
The comparison below is a bit out of context, but there's an overlap in the patterns which I find hard to articulate, so I will just leave it here for now and come back to it if needed.
Now, let me introduce you to some of the earlier work at Jaswal Lab: a semester course called Science and the Lived Experience of Autism, where students learned directly from nonspeaking autistic people by asking them questions and sharing experiences.
news.virginia.edu/video/science-…
news.virginia.edu/video/science-…
Now, before I fast forward to the study which I mentioned earlier, you will notice that the ball and shield people make a big hoo-ha about some methods of teaching autistic people to communicate not being backed by scientific studies.
It's a red herring/strawman argument, though. When my mother started teaching me to read (several months before my 2nd birthday) the method she used hadn't been scientifically validated for toddlers either.
But by the time I was 2, I demonstrably could read the letters of the alphabet and easy words constructed from them. (In 1967, that was kinda a big deal.)
Similarly, in seeking to validate the authenticity of communication by people who point to a letterboard held by a communication partner, Jaswal Lab didn't go down the arduous path of testing whether the methods used to train into such communication are good or bad.
They simply provided evidence that people who no longer require prompting are not in fact being prompted.
(If you are not familiar with the bizarre accusations that some nonspeakers face in respect of authenticity, you may have gone "Doh!" when you read that.)
(If you are not familiar with the bizarre accusations that some nonspeakers face in respect of authenticity, you may have gone "Doh!" when you read that.)
I link once again to the FAQ, which contains links to the published study plus some of the video artefacts. jaswallab.wordpress.com/summary-and-fa…
Since its publication, many people have shared the study and commented on it.
One of those people is nonspeaking autistic author Ido Kedar.
One of those people is nonspeaking autistic author Ido Kedar.
Ido himself had spent years facing accusations of inauthenticity, until he took up his father's recommendation of training to type without the keyboard being held by someone else.
Ido is now able to type on his own, and is a board member of the communication rights organisation @Communica1st.
The fact that Ido now CAN type independently, though, doesn't mean that his critics have conceded they were wrong about him and laid down their weapons in penitence at his feet.
They have simply moved on to criticising other nonspeakers who are still on the same journey.
They have simply moved on to criticising other nonspeakers who are still on the same journey.
I want to remind you of WHO those critics are: they are world famous autism researchers who claim to care about nonspeaking autistic people. Some of them specialise in communication. Many have a vested interest in ABA, a method which Ido regularly criticises.
Here are Ido's comments on the Jaswal Lab study. idoinautismland.com/?p=983
In his article, Ido links to a blog post discussing some of the negative criticism which the study received on Twitter, and how most of the critics failed to address the actual study itself!
We're here now. We're at the point where academics and therapists feel so threatened by vulnerable disabled people that they are throwing out red herrings and fighting strawmen -- anything to avoid facing the possibility that they may be wrong.
"There is so much wrong with the angry pseudo-science of those who refuse to even consider the possibility that they might be wrong," writes Ido. "It wouldn’t matter if it were merely an academic debate, but real lives are impacted, and that is not merely an academic exercise."
Real lives are impacted.
If you are an autism researcher or therapist faced with cognitive dissonance because you invested your entire well-intended life in evil, just stop doing bad stuff, get over yourself and move on.
Stop making it our problem.
If you are an autism researcher or therapist faced with cognitive dissonance because you invested your entire well-intended life in evil, just stop doing bad stuff, get over yourself and move on.
Stop making it our problem.
Real lives are impacted.
If you want to keep coddling your sacred anxiety and holy pride in the safe ambit of your ivory tower with your international awards from Those Who Really Matter To You, then keep trampling the UN Convention on the Rights of People With Disabilities.
If you want to keep coddling your sacred anxiety and holy pride in the safe ambit of your ivory tower with your international awards from Those Who Really Matter To You, then keep trampling the UN Convention on the Rights of People With Disabilities.
But know this: Real lives are impacted. Some of us have run out of patience with you, and we are no longer prepared to keeping granting you the power which you so richly undeserve. We're here:
We will talk about you on social media.
We will talk about you at conferences.
We will write articles and books about what you do, because REAL LIVES ARE IMPACTED.
We will talk about you at conferences.
We will write articles and books about what you do, because REAL LIVES ARE IMPACTED.
#RealLivesAreImpacted.
We will no longer cooperate with your research as willing participants, and we will no longer hand over our children to be studied either, because autistic people did not ask for this, and you refused to study what we DID ask for.
We will no longer cooperate with your research as willing participants, and we will no longer hand over our children to be studied either, because autistic people did not ask for this, and you refused to study what we DID ask for.
You have the power to change the world in a good way by granting us the agency which the #CRPD already recognises.
So you work to the goals of those who pay you? Then demand that THEY respect the CRPD by listening to us.
Real lives are impacted.
So you work to the goals of those who pay you? Then demand that THEY respect the CRPD by listening to us.
Real lives are impacted.
Thread continues here:
On Thursday I am going to be a speaker at my country's annual national Autism Symposium. I am not looking forward to it at all.
I actually told them that I am withdrawing, but they told me that doing so at such short notice is highly problematic, and that I would destroy my professional credibility, etc. etc.
So, I said fine, I will do the thing, but then I am going to use my time to call out your main speaker for human rights violations, and call out your whole freaking industry, and destroy my reputation in that way.
You can register for it here if you want to hear me destroy my cred live on Zoom. They have my spelling of my name and my topics wrong, but the session times are correct. I am in the Practical Workshops, session 7 and 9. health-sciences.nwu.ac.za/institute-psyc…
In Session 7, I will give people what they came for. I will provide selected practical strategies which autistic people have said work for emotional regulation.
In Session 9, I will talk about human rights and how the people who should be conduits actually create the barriers.
What follows are some of my current suggestions about how to respond to calls for participation in autism research that has not been initiated by autistic people. (These suggestions may change as other people add improved ways.)
Remember, when you are invited to be part of autism research, the researchers will try to 'sell' you the study by explaining how this can benefit other autistic people, parents, etc.
So, there may be aspects of the study that look like a good idea.
So, there may be aspects of the study that look like a good idea.
Many studies are like that.
Don't fall for it.
Don't fall for it.
Have a list prepared of things YOU want studied.
Then ask, "Did autistic people ask you to study this?"
And if they say no, then tell them you don't want to support their research, because their process doesn't support the #CRPD.
Then ask, "Did autistic people ask you to study this?"
And if they say no, then tell them you don't want to support their research, because their process doesn't support the #CRPD.
If they say "Not directly, but many autistic people have indicated that this is an issue for them, so..." then ask them specifically if autistic people said they wanted them to STUDY this.
This is important because we may talk about some issue on social media or in therapy, but it may actually not be one of the most important things for us, and now they are studying it at the expense of the more important areas.
We don't exist to "inspire" creative ideas for research.
If you are in autism research, you are supposed to study things that matter to autistic people.
If you are in autism research, you are supposed to study things that matter to autistic people.
A simple way of finding out what some of those things are, is by A-S-K-I-N-G.
So, as an autistic person, you should have a list of those things you want studied ready, because when they ask you, you need to be able to respond with conviction instead of clamming up from nervousness, forgetting everything you ever thought about in your years of insomnia.
For example, some of the things I want studied are:
1.) a treatment regime for hyperkalaemic and hypokalaemic sensory overstimulation, and how to adapt it for individual cases (my friend Benjine Gerber can provide them with the groundwork for this)
1.) a treatment regime for hyperkalaemic and hypokalaemic sensory overstimulation, and how to adapt it for individual cases (my friend Benjine Gerber can provide them with the groundwork for this)
2.) developing a process and syllabus and supporting information to help public health doctors identify and treat common health problems experienced by autistic people and their relatives (e.g. MCAS, connective tissue disorders)
3.) trauma and dissociative coping mechanisms, and what autistic people say helps them
4.) A learning programme for disabled people, about disability rights and self-advocacy, incorporating the principles of intersectionality, and referencing the #CRPD plus any relevant regional statutes/processes
5.) A similar learning programme for professionals, about how the #CRPD applies to their work and what needs to change
I could add more, but you get the idea. Write down what your research priorities are. Blog about them. Tell people.
I know many autistic adults (even those who are parents themselves) have a rather uneasy (to say the least) relationship with non-autistic parents of autistic children.
This is not the case with me. I do have disagreements with some, but with most, it's pretty collaborative.
This is not the case with me. I do have disagreements with some, but with most, it's pretty collaborative.
That makes it possible to also discuss THEIR needs, and to find common goals.
I think it's because I work in education, the communication rights of nonspeaking autistic people is a priority for me, and I also care about health, so there is plenty of common ground.
And yes, I do despiiiiiise puzzle pieces and #LightItUpBlue, and I don't like being called an "individual with ASD", but I can put those things aside in our first conversation, while we focus on common ground and their child's needs.
...And, very often, their own neglected health and emotional needs.
