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I want to talk about something very serious. It concerns the lives of autistic people in care.
I will anonymise this, because it is the principle that is under discussion, not the people.
Ready? Here we go.../
In the last few weeks, I and a colleague were called in to offer training to Very Powerful People who can decide on suitability of care for autistic people. Care homes, hospitals etc.
Great. We're trainers. We train NHS and similar staff and have done for many years./
We explained very carefully that we need particular accommodations in the training room. Nothing difficult. Simply the ability to switch off any problematic lighting, and have natural light available instead. No fluorescent lighting in particular. Not hard, is it. Yes? OK/
In charge of this session is a highly paid, highly skilled person. They informed me that they were very experienced in dealing with sensory stuff and with autism, indeed trained. On PBS, no less, in part. Mmm.
They were there some hours before our part of the session./
We got there, to the centre in the Eastern counties (matters not precisely where).
In it, fluorescent lighting as far as the eye can see. Whole building flooded with it.
"What do you need for accommodations?", asked this boss....
"Well, we need there to be no fluorescent lighting on", we explained.
We went to the training room at the back of the ground floor. Fluorescent lighting.
"Oh, we don't know how to switch it off. It's on sensors. Can't find anyone who knows. Is it a problem?"/
My colleague was, by this stage, white as a sheet and going non-verbal, about to go into a brain event from the fluorescents. I had to get them out of there fast.
So then we got ourselves a very long way home again.
No training happened.
Now, my friends, this here.../
...summarises why the care system for autistic people is pretty much entirely broken.
It's one example, but what a powerful one it is.
No matter what the autistic person needs, it's no-one's job to take any notice at all.
"I don't know what sort of lighting this is", said boss./
Imagine if you will being an autistic person in a care home or hospital.
Around you, the very sensory hazards that keep you almost permanently in shutdown or meltdown brain events, deafening, blinding, terrifying.
And the experts don't have a clue those things are even a problem/
I get mighty fed up with people being paid a fortune to brandish a PBS certificate in my face, whilst harming my colleagues and myself.
I do not think that is unreasonable.
We Must Do Better.
Thank you.
Adding: Sensory - also smells, textures, touch, tastes. Clothing, shoes, socks. Changes in temperature from one space to the next, from one surface to the next.
Any or all of these things can be processed as hazards by the subconscious and build up to a giant 'traffic jam'.
And if you are picking a team for autism, a statement for you to reflect upon. If your go-to is a non autistic person with a behaviour qualification, you might as well hire in bricklayers. Much cheaper and just as qualified in autism. Not joking.
You can get a decent bricklayer for around £20 an hour. They won't be able to behavior-control autistic distress, but at least they could put up a decent wall between us and the ruddy sensory hazard.
I'm looking at the 'Gold Standard' training manual for PBS Practitioners. Currently used to train to top academic standards for them.
It gives a case of a child, Y, who is reluctant to read out loud in class.
It talks at length about how to enforce reading-out-loud./
The assumption is that Y, autistic, is choosing not to read out loud because the text is difficult. A decision by Y to avoid putting proper effort into her work, in other words. So we give Y rewards for reading out loud more and more.../
8 out of 10 autistic people struggle to speak sometimes.
None of that is a manipulative avoidance technique.
What happens to me when I am unable to speak? Trying to force me to speak is as potentially distressing as trying to force a child with a broken leg to stand on it/
The whole ability to read a word, visualise the word, put it in context, imagine how to say it, and make my body physically create the right words and right tone...well, that can put me in utter exhaustion, if I'm on the brink of going non-verbal. It can cause shutdown for me/
That kind of non-speaking situation happens for me in busy, noisy places such as classrooms. I already cannot hear or see properly in them.
So my 'go to' for an autistic child who is not able to read out loud is absolutely not to coerce them to ignore their boundaries/
If we are desperate to hear from an autistic child who finds reading out loud difficult, we can use assistive technology to 'speak' for them, can't we.
We can do a proper sensory assessment with autistic specialists who can detect the actual sensory hazards that may be present/
We do not just assume that autistic children are trying to avoid working, the lazy little things, so we must FORCE THEM, whilst pretending this is terribly kind.
And that the basis of most behavioural ideas I see.
Nearly 600 pages in this book. 2 index mentions of sensory needs
Some may say, "But some children with behavioural challenges aren't autistic, Ann".
Very true. Some children simply do need ways to persuade them to engage. The vast majority of children want to engage. So many have never been Dxd as autistic, or having ADHD, or dyslexia..
...or EDS, or RLS, or having eyesight or hearing difficulties. Or terrible trauma from home circumstances. Or terrible hunger from barely being fed at home.
Or anxiety from bullies in the environment. Or illness or other pain.
No acknowledgement that autistic responses/
...to any of the above may be different. Or that once someone is diagnosed as autistic, that's assumed to be the only thing they can possibly 'have', therefore anything else is avoidant behaviour 'cos of the Autizmz.
It's not fit for purpose.
...or dyspraxia, which can cause immense difficulties with planning, moving and all the other things school or care environments take for granted.
And I do not personally care that a multi-£billion industry relies on this stuff for employment.
Autistic people would like employment. And that starts with not treating us as a lazy defiant behaviour.
Thank you.
PS, the idea that non-autistic people can be trained to do a sensory assessment for autistic people is bizarre. No, you can't. You can't hear at our frequencies and you can't see what we see. Nor can you smell what we can smell, or respond as we do to any other sensory input/
I kid you not, I have had 20 years of this nonsense from some non-autistic people. "Yes we did the sensory assessment".
Really? What about X that you missed, and Y, and Z?
"Oh, er...."
20 years of it.
Use proper autistic specialist for goodness sake.
And also - no I do not mean going to the equivalent of the nearest bus stop and dragging in a surprised untrained autistic 19 yr old to do the assessment. I've seen that done a few times so teams can claim they 'consulted'.
I mean autistic professionals, qualified, insured.
Adding re undiagnosed autistic people: We miss nearly all of the females, nearly all the extraverts, nearly all those who shut down rather than meltdown, nearly all People of Colour, nearly all who are older.
So for those 'it's not autism' moments....really? Isn't it? Check.
Sensory assessment forms by non-autistic folk tend to look like a list of observations, e.g. 'puts hands over eyes'. I've news for the industry; those of us who 'mask' generally do not show observable behaviours. No-one guesses my sensory hell, not even 'experienced' assessors.
Worse still, some forms of behaviourism teach a child to Always Sit Still. Hands Down. Stare at Eyes. The children dare not move. The chances of spotting sensory distress become nil.
The notion that one could <whispers> ....ask the child....not the parent...
Whoa, far too radical! Actually ask autistic people what their experiences are and what they need? Of course not! What a ridiculous notion that would be, eh...
Wait...why not do that?
And whilst some will say, "But not all autistic children can speak", absolutely right. But all can respond. This is where autistic interpreters and good Speech & Language therapists have their place, in enabling and interpreting communication, as well as looking for subtle signs.
As for how good we are, in this trade, an example.
I went to a huge centre, some 400 seats. An autistic person attended it.
I observed the sensory environment and went to sit in one particular seat of those 400.
"But that's where they sit!", said building manager.
It was where they sit, because it was the best seat in the place for avoiding sensory hazards. There were loads. The buildings team had spotted none of them.
Imagine a world where, instead of imprisoning autistic people for being in sensory distress *because* of the 'prison' environment & staff abuse, we chose to understand autism instead.
A world where we honoured and respected autistic people.
Luckily, we don't even have to just imagine it. Such places, where autistic people are honoured and respected, exist. Places where we are allowed to be ourselves, in environments that do not harm and scare. Where staff attitudes are the thing that gets changed. People thrive.
Meantime, because I now have various organisations popping up with concerns about whether I mean them in this narration, no, I don't.
The surprise for them is that this sort of thing happens So Often.
I train for a very wide variety of organisations, and across the country. Most of them are involved in the care trade.
Thank you.
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