Making Autistic People Comply - Ethical Concerns around Genetics & Human Rights.

More and more research is happening around autism.

This week, some papers have been published suggesting we're close to understanding how to control the behaviour of autistic people. How? By altering our body's internal 'programming', its genetics.  One of these papers even compared us to cows who need their own 'programming' altered to make them more tame.  Why?  So cow-handlers don't have to bother earning the trust of the cows.  They can just make cows that do exactly what they're asked to do.

I know some will immediately say, "Well, hey, autistic kids are badly behaved, right?  Don't we need this stuff, so they behave better?"

I've done quite a bit of research into the dodgy stuff published about our alleged 'bad behaviour'.  Here is some of it.  https://annsautism.blogspot.com/2020/05/autism-and-myths-around-violence.html   Summary - oops, we forgot to mention that generally, non-autistic children are more violent than the autistic ones.  We also forgot to mention that we hadn't even found most of the peaceful autistic children, in most studies.  Why? Because we were mostly only looking for, and diagnosing, the ones who were disruptive in classes and in the family home.  Huge numbers make it through to adulthood without a diagnosis.  They're not on any research paper, because no-one even realised they've been autistic all their lives.  The research we had about autistic 'behaviour' was dodgy as hell, in other words.

And here is a link to a lot more modern research into autism. https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html

About genuine difference, not fault.  About genuinely different social communication that is every bit as effective.  About honesty, integrity, dedication, concentration, fairness.  Unfortunately, too many papers still use research that dates right the way back from last century, when we'd only found a few autistic people, most of them in care homes. No wonder we misunderstood autism, eh?

So, we have these genetics papers.  Each promising a Golden Future where these 'badly behaved autistic kids' suddenly become perfect little robots, just by taking drug X, or Y. Well, that's the plan, as soon as they can make drugs X and Y of course.

But, wait.  What makes society think that this would only work on autistic children?  
What's to stop someone saying, "Hey, this could work on gay people - we could alter their behaviour to turn 'em straight!"
What's to stop someone saying, "Hey, I'm an evil dictator in some despot state and I have $$billions in the Bank.  I know, I can buy me some science and some drug labs, and find me a way to alter the behaviour of the people in my country.  Imagine how much easier it will be if everyone is compliant.  Everyone does as they are told!"

What's stopping that?

In theory what's stopping it is the ethics specialists.  The people who give permission for this kind of research to happen at all.

I'm wondering what's going on, in those ethics rooms. 
Are the ethicists aware that the data on autistic people are wrong?
Are the ethicists thinking through the perils of what could happen, when we make behaviour-control drugs a reality?

I would like to see some proper, robust thinking.
Thinking that takes into account the Human Rights of disabled people, as clearly set out in this:  

https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/the-convention-in-brief.html

That's the Convention on the Rights of Persons with Disabilities (CRPD).

Many countries in the world, including the UK, have signed up to this.

"Countries must protect the physical and mental integrity of persons with disabilities, just as for everyone else (Article 17), guarantee freedom from torture and from cruel, inhuman or degrading treatment or punishment, and prohibit medical or scientific experiments without the consent of the person concerned (Article 15)."

No medical or science experiments without our consent.

Did we consent to having our behaviour controlled with drugs to make us more compliant?

What are the safeguarding concerns around drugging children to make them comply with anything they're told to do?

What happens to them in the hands of a predator?

This isn't some utopia where children skip across the grass, suddenly happy about their lives.

This is hellish, and we need to think very, very carefully about what we're doing here.

Thank you for reading. 

 

Baffling Behaviourism and Autism

 

Let's talk about Mary.

Mary, age 28, found herself in a day care centre.  We don't know if she wanted to be there.  Mary had a learning disability.  Mary wanted to leave the room she had been placed in, and go somewhere else.

Behaviourists were employed to stop her.

Here's an extract from the research paper about Mary and some others.  The paper can be found at 

Lehardy, R. K., Lerman, D. C., Evans, L. M., O'Connor, A., & LeSage, D. L. (2013). A simplified methodology for identifying the function of elopement. Journal of Applied Behavior Analysis, 46(1), 256-270.

So, Mary wants to leave the room.  If she does not ask in Just The Right Way, the Applied Behaviour Analyst physically blocked her.  If necessary, using physical force to stop her, along with refusing communication with her until she complied.

Where are Mary's rights in all of this?

Does the presence of a learning disability mean that Mary has no right to decide for herself what she does with her days?

Does the learning disability mean that Mary must comply with the instructions and physical force of a stranger, to prevent her opening a door?

No, it does not.

But, in the world of Behaviourism, Mary has few rights.  Anything a behaviourist deems to be potentially 'dangerous' can be prevented.  Thanks to the way their research is conducted and written up, if a behaviourist deems that a tiny behaviour could become dangerous in future, that tiny behaviour can be stopped.  By force.  By hour after hour of relentless coercion.

Here's some more examples, from recent research done by the Applied Behaviour Analysis industry (ABA, sometimes now called Positive Behaviour Support (PBS))

I wish these were the only examples I have.  There are journals full of these.

The behaviourist claims that moving a finger today will mean full-on self-harm if we don't stop it.  Some claim that if we don't 'normalise' the child, they will be denied basic human rights by others, so it's only right to do so.  Despite evidence that the normalisation process leads to suicide and poor mental health.

Everything is about the power and control of the behaviourist, and the hopeless cluelessness of the autistic people and people with learning disabilities.  

This is astonishing, isn't it. Utterly inappropriate, in fact, in my view.

Most recently, we have a paper claiming that young autistic children may not move a toy unless the Behaviourist approves of the way they are moving it.  A toy knight must only be played with on a pretend castle and nowhere else, for example.  Not on the table, oh no, that would be wrong.

The child is drilled for hour after hour until they comply with the 'right' way to play with each toy.

I wish I was joking.  Here's the link to a Twitter thread about the paper.  It's not just me.  Look how many different specialists are on that thread, from different spheres of work, saying, "Heck!" or words to that general effect.

 https://twitter.com/AnnMemmott/status/1294543908693835777

This is brand new behaviourist research.  The child is forced to comply using whatever degree of physical force is necessary.  Forcing their hands onto the toy, onto the right place.

Here's some more footage of Behaviourists forcing children's hands to be precisely where they want them to be.  And, within this link, further commentary on the serious concerns so many now have about this politically-popular but curiously evidenceless theory, now linked to potentially serious harms.

https://neuroclastic.com/2019/03/28/invisible-abuse-aba-and-the-things-only-autistic-people-can-see/

There are other blogs by me on this.  And, by so many others.

Have a read through some of the research around ABA/PBS on this one:
https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html

But, mostly, worry about Mary.  Mary, as we know, is 28.  She isn't allowed to open a door to go to a different room, in her own allegedly therapeutic environment.  People force her to do what they say.

Worry about all of the Marys, and all of the others forced to perform as inmates of an asylum instead of as people living their own choice of best lives.

Let's change this awful narrative, and listen to autistic people about what we actually want.  It isn't ABA.  It's trust, respect, sharing, communication (in whatever way works best).  It's changing the attitudes of the people round us, not forcing us to be perfect robots to our detriment.

This is 2020.  We're not in the 1940s any more.

Thank you for reading.