Tuesday 12 April 2016

Autism: Girls and School - a personal reflection

There's pretty good science to suggest that 1 in 30 people is autistic.  One in every class at school, on average.
Probably half of those are girls.

Talking with fellow professionals over the years, many have said, (paraphrased) "We thought we'd found all the autistic pupils.  But then when we did a general test of the whole school, we found a lot more.  The quiet ones.  And the girls." 

That's the trouble with myths.  The myth that autism is all about boys.  The myth that it 'looks like' a badly behaved angry individual who disrupts places.  Pure myths.  But powerful ones.  So powerful that the quiet ones, and nearly all the girls, are missed from timely diagnosis.

I was missed.  I grew up in an age when autism was something to do with care home and low IQ and profound multiple disability.  The idea that there were autistic girls in ordinary schools wasn't even imagined.

I was so fortunate, in a way.  I went to school in the age of desks being in rows, facing forward.  In quiet classrooms.  With strict understandable rules.  I could almost cope, all day long. 

But how did I cope?  See that photo at the top?  That's how I see a modern classroom with fluorescent lighting.  It flickers like a strobe light, too.  The noise is deafening, from group work chatter.  From chairs scraping back and forth.  From computer and projector machinery whirring.  Deafening.  Blinding.  Exhausting.  I cannot see who is who.   But I must endure it.   It wasn't quite that bad when I was at school as a pupil, many years ago, thankfully.

I have worked as a Governor of schools for many years until recently.   Going into a classroom and staying there was an act of endurance. I couldn't do more than half a day.  So often, teachers would say, (paraphrased), "We have taken the best advice from Dr Autism-Specialist, but child X is still causing difficulties.  We put in place a structured timetable.  We allowed a time-out space in a quiet area.  We are stuck".  Into the classroom I'd go.  I'd sit there under that strobe light  effect, in the deafening noise.  I'd go into the 'quiet room', with its own strobe-light effect and deafening noise from outside traffic/heating vents/nearby classrooms, etc.   And I'd watch a child enter school, bravely, nervously, and then fade into exhaustion, pain and fear as the day went on.   I'd watch them at break times, nervously pacing the fencing, trying to avoid the bullies and the social pain.  Desperate for quiet and structure in that chaos.  A chaos that others experience as 'having fun'. I'd watch them signal their distress using their own 'language', and get ignored, time after time.  Until they did something 'disruptive'.  Then, punishment.

It helps greatly if schools ask people who can experience what the pupil is experiencing, to a good extent.  Non-autistic professionals are great for generalising.  They can't always help with specifics on sensory issues.  They can't detect the problem.  Their senses are not autistic.  And the sensory issues are huge, for so many autistic pupils.

Socially, well, I would say something about my social skills and school.  But I did what most autistic girls do.  I found someone who 'adopted' me as a friend, and I spent many years learning basic non-autistic social skills from them.  Just by watching.  Mostly, I spent school trying to avoid the bullies.  With it came violence, mockery, things being taken away from me, my stuff being damaged, me being shoved and pushed over.  I was nearly always non-verbal.  I couldn't say anything back.  I was un-co-ordinated and bad at sports.  I couldn't fight back.  Perfect target.  Even better when I'm faceblind and couldn't rightly say who did whatever it was.  After all, they were all wearing the same uniform.  An average-height person with mid-brown hair?  That could have been any one of 100 pupils.

By the end of the school day, I was so exhausted that I couldn't think what to do with myself.  I would walk to the bus, and sit there, pressed into a corner, desperate to find even the tiniest space in which I could be safe.  Often, fellow pupils would get on the bus, and stare at me.  That rude Ann who 'refused to speak to them'.  I couldn't talk. It took forever for me to think of how to say words in the right order, at the right time.  The opportunity would be long past, by the time I thought of it.  The effort was huge.  So, silence. They just thought I was rude.  Coming from a family with little money, I'd be in second hand clothing in 'own clothes days', with a basic hair cut. I relied on free school meals for a good bit of the time, and endured the staring that went with that. But I had a hot meal. That was good.

Most teachers didn't know I was even in their class, really.  I didn't speak.  I couldn't.  I would turn up, and sit there, and try to memorise what they were saying and showing me.  Quietly, in the most well-behaved way you could ever imagine.  There were two teachers who saw me.  Actually saw me.  Saw me enough to ask me how I was.   One, a kind class tutor.  She spoke to me, kindly, in year 5.  I will always remember that act of kindness.   And the Head Teacher, who had told me off in front of the entire school for being unwell too often....but then called me into her study and let me have the space to explain how I felt. She apologised to me.  She had no idea that I went from the hell of bullying at school...home to be a young carer to a very ill Mum. All whilst coping with physical health problems of my own.  I got excellent O and A level results.  I took work home, and memorised it for hour after hour.  I loved subjects which were visual, like geography, art, biology.  Things I could imagine in 3-D. I have a very visual form of autism. 

The pressure on me was relentless.  By age 17, I had developed severe anxiety and panic attacks.  I'd developed food phobias and full-on OCD.  People didn't know.  I had no way to even explain.  My couple of friends didn't know either.  I couldn't say.  I once went to my GP to ask for help.  She told me to pull myself together and stop worrying my family.  No-one knew I was autistic. 

I lived next to a Priest.  He never spoke to me.  I was the 'rude girl' from next door. I was glad of God, though.  I couldn't hear God myself, but I had pictures that showed that God cared about me and loved me.  In the darkest moments, that was what kept me going.  That, and simple structured services each day at school, where I could learn about God from the Head Teacher.  That chance for schools to teach about faith...well, they have no idea how much it can help some pupils.

I wish, with all my heart, for a different world for our wonderful, kind, caring autistic pupils. Whatever their gender, and background.  I wish for a world that didn't hurt.  A world free of bullying. A world where there was always a kind teacher who saw us.   And who asked how we are.

How do we work together, as fellow professionals, on making that dream of safety and thriving a reality?