Thursday 20 February 2020

Why The Right Info Matters

Image of paper cut-outs in different colours, each the shape of a person
It matters that we know how many autistic people there are.
It matters that we know which proportions of them are living in (for example) independently, or with family, or in care homes, or in community with some support.
It matters that we know how many are working, or parents, or carers, or students, or retired, or in need of particular care.

It matters that we know how many of them may also have a learning disability.  How many may also have ADHD.  How many may also have epilepsy, or anxiety, or depression, etc.  How many may need alternative communication methods.  How many need adapted buildings, and what generally helps.

In times of misinformation, where anyone can take to social media and publish nonsense in a few seconds, it matters even more that the info is right.

Governments plan, using that info.
Budgets are set, using that info.
Staff are hired and trained, and sent out to do work, using that info.

Charities can plan services around the numbers of people, confident that they have reliable information for funders and for their needs.

Autistic people can begin to feel confident that there's a good general understanding of how many of us there, and what sort of things we might need.

Of course, every actual service for an individual is about meeting that person's own needs, and that will vary.  I absolutely agree with that.

But, it would matter a lot if (for example) a school had 35 wheelchair users in its building, and only one accessible loo for use in break times. 

It would matter a lot if someone was organising training for learning disability nurses, and none of them were told of the number of people in care settings who are also autistic (or likely to be, but not diagnosed yet), How could they get trained on autism if their management doesn't even know it's a need?

It matters.

The right information also saves lives:

Autistic people can be put into painful, exhausting, terrifying brain events time after time, day after day, by services and environments that are wrong for them.  Fluorescent flickering lighting, air conditioning that shrieks at a frequency that makes a room deafening, staff who turn up drenched in perfumes or aftershaves.  I've lost count of the number of times staff have said to me, "We didn't know we were likely to have any autistic people in this service.  We never planned for it.  It is important?  It's just a bit of extra difference, sort of a different personality, likes routine, yes? We can deal with that with no special training, and they'll be fine in the same places as everyone else in the service, honest." (Paraphrased).

The end result is too often those brain events leading to distress behaviour, injury, sometimes death.  Brain events appear linked to forms of epilepsy, and that is a significant cause of death for autistic people.  It matters that services don't know, and can't plan properly.

We also have a whole multi-£million project set up to solve the 'problem' of the alleged vast numbers of autistic people who are allegedly utterly nonfunctional, and allegedly all costing society over £1 million each.  We see paper after paper declaring how those fabricated numbers mean it's better for society that we're no longer here, as society cannot possibly afford that alleged financial burden.  How it was unreasonable to expect society to provide extensive care for that many. That pre-birth choices could be invented which will  mean parents never need face the alleged horror of a child who (they are told) is certain to need a lifetime of extensive and expensive care, a lifetime in nappies, unable to speak (that's something I've been told repeatedly over many years...).  It's utterly horrifying stuff, such finance-based-eugenics-talk. It's resulted in very real discussions about how to erase autistic people entirely.   It came from misleading information, repeated often. 

Interestingly, when I did some background work on how many people are incontinent, the figure for autism wasn't really any different to the figure for the rest of people...but that's another story...

I campaign hard for the equality and worth of every single human being.  I won't have eugenicist policies. Not for autism or anything else. I don't want society going down that path again, ever.  But there are others who have no problems at all in viewing people as working-units and saying that if you can't earn X, you're a useless blob who should be erased.  Not quite in those words, but that's the underlying message.  It denies the full humanity of so many people, every single one a precious and loved person.

So, the numbers matter.  They matter for getting the right structure in to support people as and when they need it. And they matter in a discussion about eugenics and the future of humanity.  We've already seen too many very wonderful lives extinguished because of near-hysteria over 'cost to society'.   Research Down's Syndrome, if you want more info on that.

We can do two things:
Bring to light the full humanity, the full wonderfulness of every human being. 
And make sure that people have information that is based on accuracy, not hate, guesswork, ancient data or political spin.  Then we can make sure services have the right provision and training, in which they can tailor person-centred support that works.

Sunday 16 February 2020


photo from above a meal table. Various diverse people and sitting round it, eating and drinking, sharing fun together

Do autistic people belong, in your group?
Where do you feel like you belong?  Is it at home, with loved ones?  At a gathering, with good friends?  At an event, where you're fully part of the team, respected and valued?

There's all sorts of responses to autistic people, and it's so good to be part of a world where many have moved far from the 1940s thinking.

We've always belonged.
We've always been part of society.  Everywhere you look in old literature, from the Bible onwards, you can see people describing autistic individuals.  They just didn't need a separate word for it.  People usually with honesty and integrity, but a different way of interacting, socially.  People who thrive on routine, much as the Religious communities, schools, hospitals, and so many other places still do.  People unafraid to challenge, to stand up for social justice, and to keep saying it until it happens.   People watching for danger, listening for those tiny sounds of approaching predators or the faintest smell of smoke from an approaching fire.  People dedicating their lives to crafts, music, art, farming, healthcare and so much more.

We're always belonged.

But society forgot it for long decades.

In that forgetting, autism became scapegoated. If something, anything, was bad, it was 'autistic'. We've had decades of being described as deficient, empathy-less, and so many other things that were deeply untrue and have caused immense harm.  It's been normalised to talk about us as if we're not in the room, not reading social media, not studying the academic papers detailing a long list of alleged deficits.  And yet, one by one, those alleged deficits have been proved wrong.  As have the alleged 'treatments' that were supposed to 'cure' us of the neurodiversity that is autism.  refers.

At conferences, audiences are standing up against negative narratives.  (a blog that got some 40,000 readers interested - hurrah). 

So now, we're belonging, again.

We've re-found one another, in growing numbers.
Many are contributing and collaborating again, thanks to social media.
We're being re-respected for our skills and abilities. Much more to be done, for sure.

We're standing up against negativity that has done nothing but drive so many to disaster and death, including families fed a terrifying narrative that benefited no-one at all. "If you don't give you child this ridiculous pointless expensive thing by age 5, they're doomed!  Doomed, I tell you!  Hand me your money.  No, more money.  No, all the money...Evidence Based, Evidence Based!". Don't fall for it.  Ask for advice from autistic specialists, from Speech & Language Therapists with a specialism in autism, from Occupational Therapists who know how to improve autistic experiences.  From proper professionals who have your wonderful child's best interests truly at heart.

We're re-taking our place in a society that temporarily forgot our worth.

Belonging is something that all human beings share.
We are all of full worth.
We all bring our whole selves to the world.

Every person, autistic or not,  has their own set of things they need help with, things they need support with.  No-one is fully independent unless they're living alone on an island somewhere, knitting their own clothes and catching their own food. We rely on one another all the time, for so many things.  Look around you.  How many people are involved in lighting and heating your space, in providing transport, road and rails?  In making and growing your food?  In getting fresh water to your house, and putting drains in?  How many people do you rely on for company, for cheer, for shared collaboration, for work? Yet if autistic people need anything, it's framed as a 'cost to society'.  Isn't that odd?

Some autistic people need a lot of support, and absolutely should have that.  Support to thrive.  Medical treatment for any actual medical conditions that are making life difficult of course.  Support around any parents or carers who are providing love, effort and time. 

Most autistic people work, or volunteer, or are retired, or are parents/carers, or are in academic studies. We had no idea until very recently.

So many other autistic people are emerging from the shadows where they have been forced to hide for those long decades.

We belong.  So many of us work to make the world safer.

Let's do that together.

Saturday 8 February 2020

Risk avoidance, and autistic professionals

Our Professional Practice is very keen indeed on equality, and on risk-avoidance.  Why equality?  Well, for a start, nearly half of autistic people are also part of the LGBT+ communities.  Some 10% are part of the BAME communities.  Not far off half are female.  1 in 30 of the population, in fact.   A brain diversity, not a disease or illness, as I'm sure you know. So much of the work I do nationally and internationally with organisations is around equality and diversity, working with people from all of those groups and more.

Like many Professional Practices in the UK, we recognise that prejudice is one of the biggest corporate risks out there.  A safe system is one that has all kinds of minds considering a situation. The least safe system is one that assumes that 'low risk' just happens to look like the nearest straight white man with an interest in rugby and Land Rovers, who reads the right-wing Press, votes right-wing, just happens to enjoy the same beers as the others in the same pub, and talks at a lot at events with lots of other men just like him. [Being clear that I've owned two Land Rovers, and son played national rugby...]

But I want to talk about a deeper form of risk-avoidance.

Those who follow the art world will know of the specialists who work in detecting fakes.  Using keen eyesight and extraordinary depth of knowledge, they can detect fakes that others miss.  Many of these experts are autistic.

Moving to the world of medicines, many of those who test data to ensure that medication really does do its job are autistic.

Moving to the world of accounting, many of those who are in the risk-management end of this, testing and analysing accounts for patterns, spotting errors, are autistic.

In the world of Detectives and Police, some of the very best they have are autistic (see National Police Autism Association for details).  That ability to spot the errors, to consider facts deeply and impartially, is a core strength in so many autistic professionals and allied trades.

In the world of Surveying, I was telling the Director of a large Bank about our track record, as a mixed team with considerable diversity.  Some 4000 complex pieces of work, requiring immense focus and dedication.  Error rate on values, nil.

But, society is used to seeing 'risk' around autism from the ancient set of myths.  Myths that we now know were mistakes.  But which are often touted in the popular right-wing press.  Myths around incompetence and so much more.  And those myths have caused deep damage to businesses across the UK.  I could be here for a fortnight relating how many autistic specialists I know who were removed from their post for whistleblowing on serious fraud or other lawbreaking they had noticed and reported in.   It's fair to say that very few of those companies are now in a good way, financially.  Oddly enough, the leaders seem to have pocketed vast sums and left the company in a perilous position.  How did that happen, eh?

By demonising autistic people, in good part.

By creating a culture where autistic focus is seen as 'obsession' and autistic honesty & genuinely different social communication protocols is seen as a 'lack of social skill'. Where ancient myths of lack of intelligence or 'angry behaviour' are still dragged out from the 1940s.

We live in a society in desperate need of all kinds of minds, all working together to ensure the best outcomes.  To ensure safety.  To ensure fairness.  To minimise risk.

If you have autistic specialists available to you, rejoice.  In fact, go out and get some.  Goodness me, if properly enabled, these are fantastic individuals who will produce that zero-error-rate decade after decade.

And if you are part of a whispering campaign around autistic 'deficit', with someone pointing to a multiply-disabled young lad with a learning difficulty and pretending that what's 'autism' is always about - do know you're being told some nonsense.

Thank you for reading.

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