Sunday 26 August 2018

The joys and benefits of autistic people.

A coloured drawing of a group of people of different ages and genders
I was reading some research papers today.  One paper was pretty shocking.  It said that researchers are often told to report only negative things about autism.  If they find positive things, that's not relevant. Why?  We're not entirely sure, but there are some ideas.  For example, sometimes they are being paid by groups who get a lot of money from pills, potions and other 'cures' for things.  And sometimes they are being paid by groups making large sums from 'challenging behaviour therapists'.  If autism is known for its strengths, its positives, who would want it cured?  Who would spend a fortune on 'behaviour analysts'?

This week in the newspapers we've been told that a hostile foreign nation had been altering news about whether autism is 'caused' by injections, to put doubt into people's minds. Autism seen as a terrible tragedy, an awful thing.  Do we want our children to have it?  Oh my!  Let's all panic!  Let's not vaccinate, and instead risk our children dying of something awful, rather than have That Dreadful Autism Thing.

Wait...we're not dreadful.  We're actually mostly rather lovely.

For a start, autism is a natural part of human diversity, not a vaccine damage.  We've always been here. 

Let's look at some of the shocking things that could happen if you child is autistic.  Ready?  Are you braced for the horror of it?  Sure?  OK, here we go...  All generalisations of course because we're all individuals, like everyone else...

More honest than the average child.
Will play more fairly than the average child.
Is likely to be far more dedicated than the average child.
Is likely to be more able to focus on a specialist thing than the average child.
Is likely to be an excellent observer.

Is likely to be able to detect things that the average child cannot detect, using senses that can see and hear at a great range than others (for example).
Is likely to be more loyal and settled into a good steady life.
Is more likely to be more generous and give of their time to charities.

This is terrible, isn't it.  However will society cope with having too  many children with those features?

I know that there'll always be a few who say, "What about the children who are Really Autistic and living in care homes etc?". 

I'm really autistic.  I can't live independently.  No, really.  Yes, me.  Yes, I'm communicating with you.  That's what happens for most of us.   We grow, we learn, we communicate.  Different timeline. Technology. (Technology is great, isn't it.  We built that for you).

Yes, some children are autistic and have severe disabilities too.  For example, they might be autistic and have a very low IQ.  Or they might be autistic and Blind.  Or they might be autistic and have severe epilepsy.  Or they might be autistic and have ADHD and a defiant behavioural condition of some kind.

What society has been taught to do is call all of that 'severe autism'.  Which it isn't.  It's multiple things affecting one child, which of course is hugely difficult for the young person and for their families.

And yes, absolutely there needs to be support for the young person, and support for their family.  But getting rid of 'autism' won't get rid of the rest of the situations that mean they need care.  What on earth would getting rid of autism mean?  It's literally us, as much us as us being (e.g.) female, or age 55, or white, or heterosexual.  It's not a disease or an add-on that can be removed.

In this particular post I'm talking about the majority of autistic people.  The ones who start off as just-autistic.   If they're allowed to thrive, they'll end up just-autistic, too.  

Go back and re-read that list of positives.

I'm autistic.
My family is autistic.
My friends are autistic.
My colleagues are autistic.
Some of my fellow students (Post-Grad) are autistic.
Go into a craft fair and look at the autistic people doing the crafts.
Go listen to some music and spot how many autistic musicians are in that orchestra etc.
Walk into any large Professional Practice in the UK - accounts, law, surveying, etc - and look at how many autistic people are in there, diligently providing excellence.
Go into healthcare places and look at the autistic healthcare professionals.
Wander into the places of faith, and listen to autistic leaders.

1 in 30 of the population around you.
Providing love, care, generosity. Perhaps specialist skill.  Passionate interests.  Watching out for danger for you.

Next time you're told there may be a future with us still in it, the words you're looking for are 'Hurrah!' and "Yes please!'  Because the world needs all kinds of minds, and all kinds of people.  It's better because we're here.  And it's better because you're here too.

Thank you for listening.

Wednesday 15 August 2018

Autism, School, Exclusion. What's fair?

Classroom seen as a mass of confusing colours and shapes

The picture shows a school classroom as I see it, as an autistic person.  A kaleidoscope of shape and blinding lighting, with vague outlines which are probably other students.  Deafening noise.  The stench of different smells.  The confusion of many voices, including some heard through walls from neighbouring halls and classes.  School uniform that feels like barbed wire on my skin.

In the chaos, a different voice which I have to try to listen to.  It's so hard.  My brain doesn't want to tune the rest of the noise out.  Apparently I've been asked something, but I miss it.  The voice gets more strident, the class turns to look at me.  The intense stares overwhelm me.  The person next to me jostles me and it feels like an electric shock on my skin.  Only six more hours of hell to go.... only six....

Some of our autistic pupils simply cannot do this alone, without 'time out' to recover from the pain and exhaustion during the school day.  Not for hour after hour of puzzling painful chaos.  

Some will respond by 'shutting down', e.g. going quiet and still, as if they are ignoring the teacher and the instructions.  It's a desperate emergency strategy by their overloaded brain, allowing it to stay at least partly functional.  

Others will go eventually into meltdown, if not allowed escape or respite from the hell.  An involuntary state, in the same way that an epileptic seizure or  a diabetic incident is not a 'choice'.  It's not a display of anger to get their own way.  They may be so anxious, so utterly overwhelmed, that they will push others, flail their arms, sound angry, when in fact they are terrified,exhausted, overwhelmed.

How would you be responding, if that was your experience, day after school day, endlessly repeating?  We've turned classrooms into a hell for autism.  Fluorescent lighting. Endless noise.  Everywhere, bright patterns and overloading information. Groupwork and social time. Crowded hallways and relentless academic pressure.  Autistic children mostly could cope in the quieter schools of decades ago.  Not a hope now.  Generalising of course.  Some can cope, just about.

There's been a Court case in the UK.  A Judge has noticed that a lot of autistic pupils are excluded from school, for having meltdowns.  The Judge also noticed that some schools were doing almost nothing to help those young people to cope.  It was unfair, the ruling said.  We cannot simply exclude autistic pupils for entering meltdowns. Meltdowns are part of autism for a good number of autistic young people.

I'm personally glad of the Ruling from the Court.  Whilst mindful that of course everyone needs to be safe, the way to achieve safety is to stop hurting the autistic children.  Punishing them for responding to pain is not something any of us need to do.

What  schools need to do is to understand autism.  In understanding it, we can help to stop putting the children in pain and exhaustion.  It's actually quite easy.  And quite cheap.

Make sure your school is getting really good autism training, from autistic experts and our allies.

Make sure the school are getting really good consultancy advice about children, way before any crisis, from autistic consultants and allies.

 Notice I said 'autistic experts' and 'autistic consultants'.  People who can detect what's happening in that environment, using similar sensory systems to the pupil.  People who can explain autistic language and culture.  Yes, there is a different autistic language, a different autistic culture.  In the same way as it's important to respect the culture of children from different ethnicities, it's important to know about, and respect, autistic culture and communication style also.

I advise avoiding the use of some 'behaviour control' programs such as forms of ABA that force the child to behave as if they are not autistic.  That's not a solution.  We know from new research that it can lead to disastrous harm and suicide. The work just published by the University of Coventry refers.

Most of us, let's all work together.  Because autistic children are generally honest, generally great fun, generally fabulous young people with much to offer.  But, left in constant pain and/or fear, you'll never see that side of them.  And, excluded, their future may be as bleak as their time in school may have been.  They need you on their side.  Let's hope that Court Judgement means that schools will be given the training and the resources they need at long last.

Thank you for listening. 

Friday 3 August 2018

Stairs and Autism

A picture showing a flight of wooden stairs. It is difficult to tell where the edges are.

"Why are stairs a problem for some autistic people?"  We get that question a lot from trainee Occupational Therapists and Social Care assessors, amongst others.    A logical question to ask, because autism doesn't appear to be a mobility difficulty.

It's about sensory processing.

The picture at the top shows a flight of wooden stairs.  Did you know that was what it was?  My brain doesn't see wooden stairs.  It sees some vague stripes.  How would I know that was stairs?  How do I know where to put my feet?  I'm having to guess.  Not good.

Stairs are also an exercise in balance, and the sense of balance is another difficulty for many autistic people.  We may not know exactly where our body is, in relation to the things around us, also.  Thus, navigating a flight of near-invisible stairs, up and down, becomes epic.  I can manage to nearly fall down stairs on a weekly basis.  Only a lifetime of knowing to pace myself, grab the rail, brace against the opposite wall, or otherwise find a 'third point of contact' works.  In the holiday accommodation we're in at the moment, the stairs are steep, with narrow treads and uneven heights, some going into a semi-spiral at the top.  I've nearly fallen three times so far.

On a bad day, stairs are unclimbable for me.  Yet people will look and think, "There's nothing physically wrong with you, so you must be exaggerating".  If only we were.

So, when assessing autistic needs, be aware of the Stair Perils.  Ask about how often the person loses their balance on stairs, or worries about climbing or descending stairs.  Ask what helps them at the moment.  Consider whether accommodation can be provided that helps with this.  Maybe hand rails both sides.  Maybe no stairs at all.

Thank you for listening.

Wednesday 1 August 2018

Autism, Christianity, LGBTQ. Why it's important. Safeguarding. Caring.

A picture of a heart-shaped hole in a rock, through which a rainbow can be seen, and small bird flying across

There are different beliefs about God and what he thinks of LGBT+ people.  

In the Church of England, it's still a difficult subject for some, though recent research shows that the number who are e.g. against equal marriage has dropped a lot in recent years. (British Religion in Numbers website).

There are huge differences in the answers given by people of different ages. The chart below is from research on attitudes to equal marriage done by Jayne Ozanne's group in 2016.

It shows that below age 34, most CofE people are fine with equal marriage.  But over age 55, a majority are not.  That opposition from the over 55s is dropping, too.  But, of course, in many churches, most people are over age 55.  And most powerful people in churches are over age 55.  So we have a church where it's been difficult and sometimes dangerous to be openly gay in some places, for example. Where it's been acceptable to be called all sorts of unpleasant things, and told to Just Forgive.

What we do know is that when people get to know e.g. a gay or lesbian married couple, living ordinary lives, doing ordinary things like everyone else, as neighbours, work colleagues and friends, they usually can't remember what they were objecting to.

I am one of many people communicating for and with the autistic population.  About 3 in every 100 people are autistic.  About 2 million in the UK, on the best and most recent workings-out e.g. the count of all school age children in Northern Ireland, for example.

And at least 3 out of every 10 autistic people are lesbian, gay, bisexual, transgender, non-binary, queer, asexual, intersex, etc.  In other words, part of the LGBTQ population.  The figure for autistic females is higher, at around half.  So, that's about 600,000 autistic people who are part of the LGBT+ communities, in the UK.

Yes, perhaps half the autistic women in the country are part of the LGBTQ population.  

Autistic people are as likely to be Christians as anyone else.  As likely to be churchgoers, church leaders, musicians, organists, treasurers, youth workers.  No, I'm not joking.  We made it so awful for people, when they disclose they're autistic, that we forced people into hiding.

Now, we have a genuine bit of thinking to do here, as a church.  Why?  Because we know that autistic people are often a vulnerable population, with a suicide rate nine times higher than others.  Dying on average at age 54 after a lifetime of difficulties caused by society.  So many are homeless, having been denied jobs as well.  We know that they are routinely targeted for bullying, ostracism, fraud and every other form of crime. We know that the rates of targeting for sexual assault are sky high, to use a phrase.  3 out of every 10 autistic women are victims of rape, for example.  Some 6 out of 10 are likely to be diagnosable as having trauma conditions, after what's happened to them. 

These aren't 'angry activists' and 'dangerous/toxic people', storming the gates of your church.   Many are understandably fearful of the people around them, for really good reasons.   Most are communicating using a different body language and spoken language method to you, which so often leads to misunderstandings between the two cultures (autistic and non-autistic).  Such good research out in these last couple of years on this.  Try for the links.

If e.g. half of autistic women are part of the LGBTQ communities, struggling to survive, what is our response to those tens of thousands in our parishes?  Is our response to lock the church door in their faces, or bring them in for a good bit of condemnation? Or leave them for the nearest predator in the church to prey on?  To throw a medicalised phrase their way, or perhaps put a fiver in the collection box for some autism charity and hope God approves?

 And is that what God asked us to do? 

Or is that bread and wine for all who want to follow Jesus?  In love?  Is that safe fold, watched by the Good Shepherd, only for some of the flock, or for all who yearn to follow Him?

If wanting a safe church for autistic people leads people to see me as a warrior, that's OK.   But it's not war I bring.  It's fellowship.  And maybe that's the thing some fear the most....because to make our churches a place where all belong takes acknowledgement of fear-of-difference, and that's a hard thing to do.

We are commanded to see everyone as being made in the image of God.

Leave no-one unloved.

Thank you for reading, from this autistic member of the LGBTQ community, who follows Jesus, and always will.