Monday, 14 November 2016

Can autistic people be 'pillars of society'?

A "pillar of society" is someone who is highly respected and does a good job in society.
After decades of some groups pretending that all autistic people are a disaster, it's a role we have often been denied. "Oh they're all dangerous and unreliable".  Hmm.  You know that you're hearing prejudice when people 'other' two million people in the UK in such a way.

Yes, it is about two million.  Yes, I know the official statistic is 1 in 100, which is less than two million.  I'm using the national figures in the US, where a careful look showed it's about 1 in 30 boys.  And I'm aware that we are missing nearly all of the females from diagnosis at the moment.  My professional judgement is that we'll find it's 1 in 30 females also.  1 in 30 of the UK population?  That's around two million.  Only 1.6% of those are what we used to call 'real autism', e.g. also with a severe learning disability, speech and communication difficulties, and living in a care home setting of some kind.

So, let's look at the situation with an example or two of the other 98%+.
Person 1 - a highly respected professional running a national practice for the best part of 30 years.  Autistic.
Person 2 - a member of the teaching team working a school as an autism specialist for years.  Autistic.
Person 3 - a national specialist in project management.  Autistic.
Person 4 - a top researcher in a major University.  Autistic.
Person 5 - a senior faith leader, working patiently and carefully for decades.  Autistic.
Person 6...

I could go on for a few pages.  These are just a few of the autistic people I know and work with.  And those whose lives involve art, poetry, music, sculpture, prayer, care work.  Also, of course, those who are not working at present, or cannot work.  Each is a person of unique worth, irreplaceable, loved for who they are.

Me?  I run and own a national professional practice and have done for 16 years.  I'm a wife, a mum, a friend.  I've been in a lovely church for many years now, enjoying serving and helping to lead informal worship for small groups.   I've served as an adviser to some 200 MPs and Peer in the Houses of Parliament for more than five years and counting.   I advise or train organisations across the UK, including the BBC, Royal College of Psychiatrists, University of Oxford Colleges, schools, parent groups, children's centres, social workers, and any number of others.

And I'm autistic.  No, not 'mildly'.  I started off non-verbal.  I have a wide range of sensory difficulties, routine needs, etc.  I cannot see body language.  I'm faceblind.  I struggle with eye contact.  I collect maps and data.  I 'shutdown' and can struggle with tasks that should be really easy.  I learned to work with my strengths.  That's what made a difference.  No therapy.  No cure.

Every time I see these terrible scaremongering efforts...where people take one or two really complex situations and pretend we're all like that, forever....well, it makes me sad.

It makes me sad... because every time we do this ridiculous, 'They are all a tragedy unless you spend a fortune on this 'cure'  thing, we make life harder for all of us.  All of us struggle then to be taken seriously. All of us get distrusted.  All of us get feared. All of us face a darker future.

It makes our lives that much harder.  We may have to fight for years to get access to the simplest things, because some people are then afraid of including us.  No, seriously.  It gets more difficult to be listened to.  It can take years to access meetings, because, after all, 'those autistic people are dribbling flapping things - why would we want one in this meeting'.  Hmm.  I'm quoting, there.   I'm also quoting when I say, "Why would we include autistic people?  It takes too long to include them too."   Fascinating what's said, isn't it.

It has been so exhausting for me, as a professional, that I have had to take some very wise steps to safeguard my health and wellbeing, frankly.  I tend to only work now with groups that take me and my autism needs seriously, and take me seriously as a professional.  I advise that also for my other splendid autistic colleagues across the country.   I'm fortunate to work with a number of really excellent groups who have realised how easy it is to get people like me to be productive and give really good advice.   I'm also challenged by a few who make it ridiculously difficult, then try to blame me for it.

All autistic people need things adapted to make life more doable for us.  In the same way that people who are Deaf or hearing impaired will need to adapt communication and may need hearing aids, loops, etc. 

People like me are the ones who fight alongside others for children to have really good support, really good laws to protect them.  We fight for families to have good help, good respite.  We fight for good education and good employment opportunities.   The moment we are 'othered', demonised, belittled in the eyes of others, we can do none of that.

I'd urge people not to generalise about autism.  I'd urge people to be responsible in their use of language.  I'd urge more fellow non-autistic autism professionals to get their noses out of their research papers long enough to meet a wider selection of us, as people, as friends.  Not as test subjects or 'patients'.   Believe you me, we know when we are being treated as a patient rather than as a fellow professional. 

Sometimes, of course, it's genuine fear that stops some fellow professionals engaging with us; they may have never met an actual autistic person before.  I kid you not.  Some of the autism degrees never require people to have met a single autistic individual. Do be careful who you pick as your 'expert', good people. There's lots of excellent ones out there.  And quite a few who hide behind things when near us, in case we speak to them...which is quite amusing in a way.

Especially, I'd urge us to ask about the creativity of autism. The spirituality.  The caring.  The love.  The honour.  The respect.   The passion.  The determination.  The honesty.  The dedication  The search for fairness and social justice.

If we are not prepared to look for those things, then we are missing nearly all autistic people, in a quest to prove a point that was never worth making.

No autistic person is helped by being portrayed as a tragedy. Or as an epidemic.  Or as a monster in need of 'dog-training'. 

I work for a world where every autistic person is allowed to thrive, grow and love as themselves.  Exploring their own interests, their own passions, their own way of communicating, their own faith or spirituality, their own emotions, their own relationships and friendships. Safely and responsibly, of course.  As is the case for all other human beings.

Thank you for listening.