Sunday, 10 February 2019

Autism. Is your training from the 1940s?

1940s male teacher at a blackboard, using a cane to point to an equation. Caption reads, "Thus we conclude that unless the small boys are biting someone or solving this equation, they are not autistic. Any questions?"

In the 1940s, there was some early information about autism.  Most of it was wrong.  Unfortunately, a lot of it is still in the manuals and training materials, but upgraded in parts to newer wrong information.

So many myths.  If you're about to receive training, you could treat this as a sort of '1940s training Bingo card'...

About numbers. (No, it's not 1 in 100, it's around 1 in 30, though 1 in 40 isn't a bad guess either).
About ability. (No, it's not linked to a low IQ; we were using the wrong IQ tests).

About conduct. (No, it's not linked to a greater risk of violence, thank you).
About gender. (No, it's not just males).
About speech. (Most autistic people do learn to speak).
About age. (No, it's not just young boys, & no, we don't grow out of it, any more than people grow out of being white).
About ethnicity. (No, it's not just white people).
About employment statistics. (No, it's not 16% in full time employment, it's higher than that).
About cost to society. (No, it's not £32 billion.  In fact, society benefits greatly from autistic minds, financially and otherwise, and we don't measure someone's worth only in money).
About the need for early intensive expensive therapies or the child will be a dribbling wreck forever (Actually, good research shows that most go on to develop skills quite naturally with ordinary loving support, just at a different time.)
About the need for Applied Behaviour Analysis to control 'problem behaviour' (ABA is sometimes rebranded as Positive Behaviour Support). (No, good research, e.g. Cochrane Review, shows that's generally no more effective than any of the other alleged cures/'normalisation programs' out there).
About autistic people needing a cure. (No, most are very clear that we don't want one, although personal choice would be respected if there was any such thing as a cure, which there isn't.  It's a natural diversity, not a disease, although some need significant support.)
About it being better for autistic people to stop using repetitive movements. (No, research shows we concentrate better when we do).
About autistic people needing to be stopped from focusing on specialist hobbies. (No, research shows that's often our way to good careers).
About the need for eye contact to be given, in order to achieve in life.  (No, new research shows that even non-autistic people generally don't bother, and it makes no difference at all to friendship chances).
About autistic people being 'the problem' with relationships and social skills.  (No, it's a double empathy problem, where autistic people communicate differently and have a different cultural understanding).
About sexual identity. (Little to no understanding that a third or more autistic people are part of the LGBT+ communities).
About a lack of empathy. (No, good research shows this is just a myth).
About a lack of theory-of-mind, i.e. the ability to understand that others have different opinions.  (No, that has been debunked as well. Most gain this with age).

So, how on earth have we ended up with this many myths continuing painfully from one decade to the next?

I'm afraid the answer is that too much of the training has been stuck in the 1940s.  Too much is done by non-autistic people, often ones who happen to know an autistic person in some way (maybe a relative) but seemingly have never asked them about life.  I mean 'asked' in any communication sense, not just speech.  Over a million autistic people in the UK, and too often, such trainers have none of them as personal friends, none of them as colleagues.  Isn't that odd?

Such trainers pass on the ancient myths, generation after generation.  They write them down, put them on Powerpoint presentations, and deliver them to you as if they are fact.   Research based in part on materials from the 1990s and 1980s, which was based largely on watching groups of profoundly disabled young men in a care home, as far back as the 1940s.   As far removed from a balanced view of autism as one can get, in fact.

Worse still, they often expect you to pay for this.  It might look slick, with excellent graphics, and the trainer might look like they could pose for a fashion magazine .  But...are you really wanting 1940s material?

Does it work, all of the Tragedy stuff?  Let's look at the outcomes after enduring decades of this myth-making and misunderstanding from some.

Are autistic people better employed?  No.
Are the autistic people who are in employment better able to disclose that they're autistic, safely?  No.
Do they have safer lives?  No.
Do they have better education?  No.
Do they have better healthcare?  No.
Do they have greater access to arts, culture, faith -  things that bring joy and meaning to life?  No.
Do many have catastrophic mental health situations from all the negativity?  Yes.
Do too many end their own lives, unable to take any more of it?  Yes.

I'm going to be quite clear that some places are excellent.  Some people are excellent.  Some trainers are excellent.  Some researchers, parents, teachers and people from all other groups are excellent.  I'm blessed with working with a lot of them.  I'm also going to be clear that yes, some autistic children need a lot of support.  And of course society needs to ensure they - and their families - get that. By all means direct such families to the autistic specialists and allies that they need to help them with their young person.

But, generally, the state of training on autism is of low standard and lacking integrity.  I've been in this industry a long time, and spent many years as a professional trainer on autism, working nationally and internationally with groups of all kinds.  What I see, and hear, from some of the bigger charities and groups, is very poor.  I won't name names, because that's unprofessional.

Do we need to do better than this now?  Oh yes, indeed.

So, how do we do this?

For a start, you need to ensure that your training is authentic:

Ask:  Whose company is this?  Is it led or co-led by autistic people?    Do you want training from people who don't have confidence in autistic people to co-lead?

Who designed and created the trainingAre they qualified to do so, either from lived experience and excellent train-the-trainer skills, or via a professional modern neurodiversity-friendly course?  Are they autistic people, perhaps in partnership with allies?  

Were they paid properly for that, at the same rate as the non-autistic people?  Think about your company's anti-slavery Corporate Social Responsibility statement.  You don't want to be teaming up with groups  who use autistic people as slave labour, and I'm afraid some do. Or, they pay only a token amount, way below living wage.  We're not slaves.  We have houses, families, bills to pay.  We need actual money, the same as everyone else.

Who is delivering the training?  Is it autistic specialists, perhaps with allies as well?

If the answers to that are 'no', you might be getting '1940s training', and perhaps perpetuating the awful lives that autistic people already experience through no fault of their own.

Insist on authentic, expert training from autistic-led teams and our allies.

Want good training from such teams?  People like me work with them, and run them.  Ask us.  Look for #ActuallyAutistic trainers on Twitter, for example.

Saturday, 9 February 2019

Autistic Children and Toilets: Misunderstanding the Difficulties

A disorientating digitally altered photo looking down into an empty toilet cubicle.

Many autistic children sense the world very differently from how many parents and teachers expect.

Above, an example of how an autistic child may see a room with a toilet and hand basin in it.  A tiled wall, a patterned vinyl floor surface.  Would you put your feet on that floor?  Could you work out what it was?  Could you even reliably find the toilet?

Now let's add in the 'smellscape'.  Perhaps air fresheners.  Toilet cleaners.  Hand soaps.  Wee.  Poo.

Then, let's add in the soundscape.  Noisy pipes.  The jet-engine-like flush.  The deafening smash of wee or poo hitting the water, and the terrifying prospect of freezing water splashing up.

Let's then add in the elements of freezing cold toilet seat, ice cold taps or boiling hot taps, the ice-cold metal of the toilet handle, the taps.  The searing rough surface of the hand towel, or the further deafening roar of a hand drying unit perhaps.  Then, of course, the pain of dragging clothing down in order to use the toilet....coping with the complexities of the toilet paper and what to do with it, where to put it.  Dragging clothing back up again, like someone using sandpaper against your skin.

This can be the most terrifying experience imaginable for a child whose experience of the world is turned up to 'max'.

For others, each noise and smell, texture and feeling is a fascination and a puzzle which needs exploring, and they may seek out those experiences over and over, trying desperately to make sense of them.

Some may experience difficulties with balance and co-ordination, or with internal signalling to say they need a loo until it's too late.  Or with the ability to point or signal that they want the loo.

To their credit, many autistic children endure all of this and actually do use the loo, politely, over and over again, and continue to do so for life.  No-one questions whether it's hell, or whether we could design such spaces in ways less exhausting to use.  So, let us bear in mind that most autistic children do manage to cope with this ridiculous scenario.

How easy it is for some adults to misunderstand why an autistic child may avoid using a toilet.  Some are so desperately afraid of these spaces that they will only wee or poo in a quiet, safe corner.  Often on soft material that disguises the noise.

"They're just animals - they just don't care - this is deliberate challenging behaviour - we must find ways to force them...."  We even have playwrights writing a horrible play which portrays autistic children as animals, using dehumanising puppets and this theme.

Oh my.  No.

Always, always presume competence.  Presume that the child wants to learn.  Always, always show respect and caring.  Take good advice from autistic advisers and our allies, who are experienced and expert.  Many are parents, many have vivid memories of their own of the challenges of such spaces.

If you are designing such a space, take good advice on that design.  Think about minimising the pain and the disorientation.

Instead of assuming that, since it's OK for you, it must be OK for an autistic child...think differently.  Because the answer to all of this isn't the child being forced into that hellish space.  It's about working with them to find answers to each part of that nightmare.  Thinking about making the visual experience understandable.  Minimising the smells.  Minimising the noise.  Using soft towels, soft paper.  Using clothing that doesn't cause terrible pain when it is pulled up or down. 

Work together.  Learn from one another.

Thank you for listening.