Wednesday 27 March 2019

Autism Acceptance, not Tragedy

A rainbow coloured infinity symbol
April is a time of Autism Acceptance.

That doesn't sound too controversial, does it.  But, it is.

There's people who say to me, "How can we be positive about autism?  Why aren't you more negative about it all?  Why aren't you talking about the hardships that some individuals and some families go through?  Why aren't you discussing those in greatest need of support, who cannot live independent lives or be in paid employment? Where's the tragedy stuff, Ann?"

I'm glad to explain.  It's simple.

We have now had more than 70 years of portraying autistic lives as tragic.

The end result has been more tragedy.

This isn't a surprise.  Suppose we were endlessly negative about (say) women, saying, "Some women live awful lives.  We mustn't say good things about being female, because that's disrespecting the women who really struggle."  Would this be a good thing?  Would it help any of the women who were indeed struggling, if everyone was trained to see women as a tragedy?

The tragedy-narrative hasn't led to better results.  It hasn't led to better services.  It hasn't led to better care.  It hasn't led to better benefits, or better education.

It led to some schools not wanting autistic children there.  It led to some leisure services deciding that autistic people were too much hard work.  It led to too many employers deciding that autistic people were too costly, too problematic.  And it led to some groups earning themselves a breathtaking fortune from providing abusive 'services' to these tragic autistic people.

Exceptions apply.  Of course there are some good services out there.  But generally, the 'awareness' became 'bewareness'.  Beware!  Autism!  Run!

So, that's the reality of forcing an entire population of autistic people to live, endlessly, as figures of tragedy for the media.  Or objects of pity.  Or objects of charity.

This is why the Autistic Pride networks exist now.  They're led and run by autistic people, and their aim is to boost self esteem.  To celebrate autism and whatever makes that person happy.  To showcase autistic arts, etc.  To enable access to things that are genuinely fabulous.  And to share life, friendship and fellowship with other autistic people of every kind.  Whether verbal or not.  Whether of high, low or medium IQ.  No matter what support needs they may have.

Is it perfect?  Of course not.  But it's like emerging from under an endless burden of negativity, into a shaft of sunlight.  And that acceptance, that friendship, that sharing - well, it enables families to relax, to enjoy, to start to thrive.  It enables schools to think, "Hey, what have we been missing here?".  It enables employers to get involved and see us as the fabulous, varied people we are. enables people to find some answers for themselves, find new ways round obstacles together.  Whatever their desires for their own lives.

Is every autistic person fantastic all the time?  Nope.  We're all individuals, so some of course are grumpy or sad or any other emotion. Some are in terrible pain or fear, because teams inflict pain and fear upon them, quite accidentally, through ignorance.  Some have awful things done to them that are quite enough to make anyone angry, avoidant or afraid.  Some have multiple disabilities or difficulties, and they are rightly looking for good answers.  So finding those good answers is important.  For them, and for their families.

In the wider work I do, I help ensure that care homes are run safely and well, listening to autistic people who live there.  I help families to find positive ways to help their young people to thrive, and direct them to autism-respecting services that enable skills and autonomy without abusive and controlling methods being used. I train teams to understand and respect autistic people, changing their own attitudes to us.   I do all of this with amazing teams of people, many autistic.  Including our own wonderful Autistic Pride Reading charity team, and the amazing experts in AT-Autism.

Our aim is to ensure that every single autistic person is able to live a life that brings enough joy.  Enough focus.  Enough thriving.

As a parent, I've had a long journey through the perils of schooling that went awry, and a fight for basic services.  I'm not living in some fantasy where all is filled with glitter.  

But, the tragedy narrative has caused too may dead autistic people. Too many have fallen into such depression, such anxiety, that taking their own lives is preferable to living another day of fearmongering and loneliness from all that 'othering'.

So, yes, I won't be talking about autism as a tragedy, because we're not tragedies.  We're a group of truly fantastic people.  Once we embrace a deep understanding of autism, and accept, include and enable each other, all of us benefit.

If you are looking to do something positive, donate to an autistic-owned enterprise.  Come along to our public days.  Buy goods and services from autistic people.  Make sure you're not 'lighting it up blue' (a campaign started by a very problematic foreign organisation which doesn't like autistic people at all).  Use symbols like the one at the top of this page, showing autism acceptance.  Red and gold versions exist too.

So, autism acceptance, in April.  We're reclaiming it and making it our own.  

Get to know more about us, and enjoy.

Wednesday 20 March 2019

Autism: The Perils of Some Online Training

A man with dark hair, in a business suit, looking at a laptop computer, in a shocked way.  There are three exclamation marks.

Not much time?  A problem to trek to a distant training course?  It becomes tempting to look for online training.

Training on autism is certainly available online.  I've seen, and taken, a few such courses.  

Some are reasonable.
Some, frankly, are very worrying.

So, I wanted to share a few important thoughts, for those making decisions about how their staff are trained.  And, of course, to people considering taking online training.

One important thing about autism training is removing prejudice.  Prejudice exists.  It not only exists, but is a major barrier for autistic people.  It leads to terrible outcomes for some.

There has been a very recent study looking at prejudice against autistic people.  It showed that the best way to stop it is for non-autistic people to spend time with autistic people. To get to share life with us for a while, to meet us as friends, neighbours, colleagues, parents, students, volunteers, artists, craftspeople, musicians, etc.  To get to see a few of us, in all our variety, and of course to learn good, accurate information.

Online training courses don't allow for that personal interaction.  People never get to meet us.  So, there is a concern about whether such courses can do much for overcoming prejudice.  That research showed that, for some, just knowing people are autistic makes the prejudice worse, not better.  It needs a trainer's skill to overcome some of that.

Worse still, some online courses show every stereotype imaginable.  Endless photos of a youngish white male, dressed in clothing that looks like it has come from a charity shop, perhaps sitting aimlessly on a bench somewhere.  Or being 'looked after' by some smiling perfect professional.  It's depressing and inaccurate stuff.  Most of us are not male, for a start.  I'm quite serious about this.  If we start looking properly for all the autistic people who do not identify as male, it adds up to more than half the autistic population.  Surprisingly few of us are in care home settings.  Quite a number are business professionals, as likely to be dressed in a corporate suit, or other workwear, as a tracksuit.

Some online training also tends to be filled with myths.  Myths about '1 in 100' being autistic, when that's a figure from decades ago.  Myths about lack of empathy, myths about lack of awareness of others, myths about our communication and culture. Myths about dangerous behaviour, when most of us are safer than other people to be around.

There's another problem with some of the online training.  We don't know who's taking the course.  Unless they are sitting in the room with the 'examiner', it could be absolutely anyone who fills in the answers.  As a HR person or manager, you've no idea if Employee X did indeed get 95% on the assessment, or whether they asked a mate to do it for them.  You also do not know if they simply screen-shotted all the answers and then wrote them out in the assessment bit, without taking in a single bit of knowledge.

But now, they have a Certificate that says they know about autism.  Out into the world they go, looking for these shabbily-dressed young men sitting on park benches  - and perhaps making a right old mess of every encounter thereafter.  It forces autistic people in your organisation to hide, because those stereotypes are simply humiliating for them and in no way represent their own reality.

If you are searching for quality autism training that matches your corporation's ethics and anti-slavery policies, here is your checklist:
  1. Autistic people are involved at every level in the training organisation, as equals with non-autistic people.
  2. Autistic people designed or co-designed this training.
  3. Autistic people lead or co-lead the training, and are paid properly for it, not a book token or for 'work experience'.  Unless of course that was their own personal choice to work for a token amount, or as a volunteer.  Watch out for breaching your anti-modern-slavery policies if you're using companies that coerce autistic people into working for free, when money is paid to others.  It's an embarrassing question to ask, but it's vital to ask it. No good training company should mind affirming that they are responsible about this, and maybe letting you communicate with their autistic trainers about how valued they are.
  4. The materials use respectful language about autistic people.  
  5. It does not use puzzle-piece logos or promote the work of highly problematic groups that wish to see autism 'cured'. (A similar aim to wanting all gay people cured...yikes, no).
  6. It gives trainees an accurate and respectful idea about autistic culture and communication, sensory needs, and the value of passionate interests.
  7. It shows how autistic people can thrive, and how to enable us to do our best.
  8. It has a wide variety of autistic people represented or described, e.g. of different ages, cultures, ethnicities, social groups, genders.
  9. It respects the many ways in which autistic people contribute to society, whether as friends, volunteers, writers, supporters-of-others-online, workers, professionals or otherwise.  But also stressing that all are valued parts of society, all needing lives that are worthwhile, safe and respected, whether in paid employment or not.
  10. It focuses on changing the attitudes and misunderstandings of other people, not changing the autistic people to be copies of non-autistic people.  In particular, it avoids problematic 'behaviour-training' such as ABA to enforce such normalisation. 

And... it enables the trainees to feel relaxed and cheered about meeting autistic people, keen to encounter us and learn more from this fantastic and diverse group.

If you are confident that the training ticks those boxes, use it.

I'm open about recommending my own groups and the groups where family members are trainers.  Plenty of other good ones out there, of course.  And there's work enough for all, respecting one another's contributions.  Here are two starting points.

AT-Autism, offering national and international training (CPD, world experts)   Specialises in training organisations to have a deep understanding of autism, and improve their in-house training. Highly respected professionals and leaders, autism-positive charity  Working in the central South of England, encouraging the best of cheerful and practical advice for autistic people and all who share our lives.

Thank you for reading.