Thursday, 28 February 2019

Driving Whilst Autistic - The Research

A picture of a green Jaguar open top sports car

Updated 5 March 2019

Here in the UK, we have been having an interesting set of discussions with the Government driving authority, the DVLA.  There was input from various Police Officers, the National Autistic Society, GPs and other interested parties.  The subject - whether it's compulsory to notify the Government that we're autistic, and get a medical professional to confirm we're safe...when we're already assessed and passed as competent drivers. The subject is raised often for discussion by the DVLA's Panel of Experts, so it is important to be clear about what autism is, and is not.

Let us remember that most autistic people wishing to drive make a choice to have driving lessons, where a highly qualified driving instructor already assesses our competence.

We also have to pass the same tests as everyone else, on eyesight, on knowledge, and on practical skills behind the wheel.  These tests are taking by highly qualified examiners, who test every aspect of competence.  100% of autistic licensed drivers were autistic when they took  - and passed - their test.  It's a lifelong neurodiversity, not a sudden health condition.  Not a mental illness/ 'psychiatric disorder'.  That's a fact, not a judgement of mental health conditions.  See the National Autistic Society for details, for example.

Apparently, someone has told the DVLA that autistic people may be more likely to have driving problems than others.

Aside from the illogic of assuming that this would only be apparent after we've passed a test showing we're competent, let's have a romp through the research on this subject.  Brace yourselves and buckle up, my lovelies, because this is going to be a rough journey.

First up, the paper by Haley Bishop and colleagues, published 2018.  They reviewed whatever competent papers they could find on the subject of autism and driving.

We know that much of what we 'knew' about autism, historically, has turned out to be rubbish, and therefore materials from the last few years are the relevant ones.

Away we go.

Almberg et al. 2015.  Forgot to assess whether their autistic people also had ADHD.  Thus cannot tell which characteristics of good or bad are which. Ooops.

Bishop et al. 2017. Autistic participants, "Showed no difference in reaction time between hazard types" (compared to non-autistic ones).   Small sample. But this is hardly a sign of a problem.

Brooks et al. 2016. Minimal performance differences were observed between autistic and non-autistic participants. Nothing of danger here then.

Cox et al. 2017.  Only bothered looking at novice drivers in a computer simulation of driving, which isn't evidence of anything in particular.  Small sample. 

Factor, 2016, looked at young adults in a computer driving simulator again, which - as for Cox, above, isn't evidence of on-road driving ability.  The autistic people had less driving experience than the non-autistic participants, also.

Reimer et al. 2013 looked at 10 young male autistic people, and..used a computer simulator, not real driving.

Sheppard et al. 2016 looked at a small group of young male autistic adults, and noticed that slower reaction speed was related to IQ, not autism. None actually had a driving licence.

Wade et al. 2015 looked at 6 autistic teenagers.  I don't think I need to say more about this, do I.

We have had concerns about 'executive function'  - the ability to plan and do something.  But the most recent research shows that autistic adults have practised tasks well enough that this isn't any more of a problem, generally, than for any other adult group.  

The research on ADHD, a group also affected by DVLA random rule changes, seems no better.  For example Aduen et al. (2018) who put drivers with ADHD into their own cars, equipped with monitoring technology, and counted how many accidents they had. Then compared that to non-ADHD drivers, also in their own cars, also monitored.  Except...the drivers with an ADHD diagnosis were generally younger, with less education, less overall driving experience, less money to buy a car that had anti-crash technology in it.  They were not comparing like for like.  They hadn't even considered that the car was an independent variable.

Back to autism, where Chee et al (published 2019 in Disability & Rehabilitation) looked at 17 autistic drivers, of which one was female. (I'll let you think about that...).  All were put into a driving simulator.  The autistic drivers had on average 500 hours less driving experience than the non-autistic participants, but the researchers decided that greater error rates were because of autism.  Autistic people were better at not tailgating, but this was framed as a potential deficit of our spatial awareness.  What is this stuff?

Well.  Mmm.  Older drivers? No.  Experienced drivers? No.  Women drivers?  No.  In fact, no thought at all to the usual groupings of any kind.

Most autistic people are adults.  Most are over age 30.  Around half are not male.  Many are from minority ethnic groups, or the Professions.  Some are serving Police, Fire Crew, Ambulance and Paramedic staff.  Doctors, Nurses, professionals of every kind.  Where is the evidence of incompetent driving for those latter groups? There is none.

Do you understand how depressing it is to be in a world where this research passes as 'evidence' of anything at all?

Our young people deserve a future where their competence is taken as seriously as it is for everyone else.

If they pass a test, they have been assessed as competent.  If that test does not test for competence, improve the test.  Do not punish those taking it.

After hard campaigning and shocked outrage in the UK, the DVLA changed its guidance back to a need to report only 'if it affects your driving', and issued an apology.  This is good.

But...the episode has left behind a trail of damage.  Autistic people who had been shocked and afraid.  Afraid of losing their car, their freedom, their jobs.  Afraid of going forward for support or diagnosis in case someone did indeed remove their licence for Driving Whilst Autistic.  After all, if they are not diagnosed, they wouldn't have had to report in to the DVLA.  All of this happened, it seems, on sheer misunderstanding.  That is an error we cannot afford.  

Any Panel meeting to discuss such a life-changing, financially devastating move should convene only with the finest and best members & facts.  Openly and transparently.

There should be:
Evidence heard directly from those affected, in ways that enable, without exhaustion.  Research commissioned from those with a good modern understanding of autism, using a participatory model that fully involves autistic professionals and colleagues in its inception, methods and implementation. 
At meetings, the top specialists from affirming and enabling charities and groups, with many autistic specialists amongst them
Similar Panel aims should happen for any other affected group such as ADHD, of course.

The autistic communities have had quite enough of having things taken away from us, and quite enough of meetings about our lives being held without reference to us.  It is really not OK.  We need better than groups whose only experience of autism may have been to watch Rain Man, or meet one of us in a prison.

Meantime, lovely autistic people, continue to drive safely and wonderfully. Do follow legal requirements at all times.  Just like you already do.

Or, if you don't feel driving is for you/something you can do safely, take full advantage of whatever other means of transport exist.  Just like you already do.

Thank you for reading.

Saturday, 23 February 2019

I want my autistic child to make friends

Two furry teddy bears leaning against one another, facing the camera

Many parents new to the world of autism are worried that their child won't have friends.

It's certainly true that autistic children can struggle in a non-autistic world.  But there's lots of hope ahead.

The important thing is that the parents know about autism.  Knowing that it's part of brain diversity, not a disease.  In the same way as being dyslexic is a brain diversity.
Knowing that it means their child is probably sensing the world very differently, with way too much information coming in from some senses, and way too little from others.

I recommend that parents have a look at This two minute video, with the sound turned right up  and experience the possible world of their child, in any busy, noisy place.  Parties, for example.  Classrooms.  Supermarkets.  So loud, so bright, so overwhelming.

Parents also need to know that autistic children speak a different 'social language' to other children, so there are misunderstandings on both sides.  It's never the fault of one side or the other.  Both sides need to learn how to 'speak' some of each other's languages.

Autistic children prefer to meet somewhere where there isn't a crowd of others.
They prefer to play alongside another child, using separate toys or games.
They don't make a lot of eye contact, because it hurts tremendously to do so, but they see well out of the side of their eyes, and can hear amazingly well when it's quiet enough to do so.
On average, they play more fairly than others.  But, they may panic if someone takes their stuff away or moves it.  Why?  Go back and watch that two minute video again, and think about what would be calming for that young boy.  A favourite thing?  A familiar pattern?

So often, parents hope that their autistic child will want to go to lots and lots of busy, noisy parties, and make polite conversation.  It makes sense to think this, because that probably works for a lot of other children.'s hell.  Just hell for them.  The chances of an autistic child making a friend when they're in lots of sensory pain are very limited.  Mostly, they'll hide, or freeze, or run away, or maybe get into such a panic that they may lash out in fear.  Certainly they won't be able to think how to say anything useful.  Much better to find their favourite hobby, and find a club for young people to share that.  Local autism charities may well know of such ones.  There are also specialist play centres.  Parties might work if they are structured and in a good sensory environment.  Outdoor play for example, well managed.

There's good humorous books such as this one, talking about the strange behaviour of non-autistic people ("NTs").  I'd recommend such books for the adults in the family as well as the younger people, because there's so much normal human behaviour that is really odd.  But because most people do it, it's accepted.

Schools can really help.  They can learn that autistic children need downtime to recover from sensory hell.  They can learn that a quiet space and a useful hobby can be much better than going out into the deafening swirl of the playground.  They can be understanding of shutdowns and meltdowns, and realise that's emergency behaviour, distress behaviour - not 'challenging behaviour'.  Schools can arrange fabulous training from places like the Autistic Pride networks, which look at self esteem and how to change the thinking of the teams.  Or from companies such as AT-Autism, who likewise look at team training and making life easier for everyone.

And other parents can help, too.  If you invite an autistic child round to play, expect them to play autistically.  Don't be offended if they cannot speak at the time, or need to leave early.  Let them bring their own comforting items and explain to your own child why their friend plays differently.  But that the play is a sign of respect, not rudeness.  In autistic lives, parallel playing and keeping sensory distraction to a minimum can be very respectful indeed of other autistic people around us.

You can help as a parent by explaining positively about your child.  If they use repetitive movements, explain that it helps them keep track of where their body is, or helps them keep calm.  Know that good research shows it doesn't stop them concentrating.   You can be watching out for children who take advantage of them, or enjoy bullying them or getting them into trouble. 

Help by refusing to buy into expensive and useless 'treatments' that allege to stop autism.  It's like trying to stop someone being 5ft 6.  Autism is built-in.  Be aware that a lot of the 'treatments' are now linked to really, really bad outcomes for the children later on. Even the 'evidence-based' ones you may hear about.  The evidence for some was that it trains the children not to say or show they're in pain any more.  Not good for any child.   A good speech and language therapist can help if a child has difficulty communicating, though.  They can find what works, whether it's speech, technology, sign or otherwise.

It's a beautiful, fascinating world.  Certainly one where there's not enough knowledge, not enough training or support yet for families.  And certainly some young autistic people need a lot of support in their early lives.

But letting them being themselves, wonderfully autistic, (safely, of course), is the right thing.  They will learn, and grow, and get confidence.  Just on a different timeline, perhaps to that of other children.  But every bit as valid, every bit as treasured.  Some will go on to be the world's specialists, and  - yes - have good friends.  Not hundreds, no.  But good.  People who respect them for who they are.  Quite possibly online friends.  (Safely, of course).

Bringing up our own autistic son was an amazing journey.  Whilst I have a lot to say about a few people who didn't make life easy, and a lot to say about the pressure on parents from society...I am so proud of him.  Just so proud.  Just because he's his own fantastic self.

Now an adult, a well respected adviser and trainer....on autism...

Sunday, 10 February 2019

Autism. Is your training from the 1940s?

1940s male teacher at a blackboard, using a cane to point to an equation. Caption reads, "Thus we conclude that unless the small boys are biting someone or solving this equation, they are not autistic. Any questions?"

In the 1940s, there was some early information about autism.  Most of it was wrong.  Unfortunately, a lot of it is still in the manuals and training materials, but upgraded in parts to newer wrong information.

So many myths.  If you're about to receive training, you could treat this as a sort of '1940s training Bingo card'...

About numbers. (No, it's not 1 in 100, it's around 1 in 30, though 1 in 40 isn't a bad guess either).
About ability. (No, it's not linked to a low IQ; we were using the wrong IQ tests).

About conduct. (No, it's not linked to a greater risk of violence, thank you).
About gender. (No, it's not just males).
About speech. (Most autistic people do learn to speak).
About age. (No, it's not just young boys, & no, we don't grow out of it, any more than people grow out of being white).
About ethnicity. (No, it's not just white people).
About employment statistics. (No, it's not 16% in full time employment, it's higher than that).
About cost to society. (No, it's not £32 billion.  In fact, society benefits greatly from autistic minds, financially and otherwise, and we don't measure someone's worth only in money).
About the need for early intensive expensive therapies or the child will be a dribbling wreck forever (Actually, good research shows that most go on to develop skills quite naturally with ordinary loving support, just at a different time.)
About the need for Applied Behaviour Analysis to control 'problem behaviour' (ABA is sometimes rebranded as Positive Behaviour Support). (No, good research, e.g. Cochrane Review, shows that's generally no more effective than any of the other alleged cures/'normalisation programs' out there).
About autistic people needing a cure. (No, most are very clear that we don't want one, although personal choice would be respected if there was any such thing as a cure, which there isn't.  It's a natural diversity, not a disease, although some need significant support.)
About it being better for autistic people to stop using repetitive movements. (No, research shows we concentrate better when we do).
About autistic people needing to be stopped from focusing on specialist hobbies. (No, research shows that's often our way to good careers).
About the need for eye contact to be given, in order to achieve in life.  (No, new research shows that even non-autistic people generally don't bother, and it makes no difference at all to friendship chances).
About autistic people being 'the problem' with relationships and social skills.  (No, it's a double empathy problem, where autistic people communicate differently and have a different cultural understanding).
About sexual identity. (Little to no understanding that a third or more autistic people are part of the LGBT+ communities).
About a lack of empathy. (No, good research shows this is just a myth).
About a lack of theory-of-mind, i.e. the ability to understand that others have different opinions.  (No, that has been debunked as well. Most gain this with age).

So, how on earth have we ended up with this many myths continuing painfully from one decade to the next?

I'm afraid the answer is that too much of the training has been stuck in the 1940s.  Too much is done by non-autistic people, often ones who happen to know an autistic person in some way (maybe a relative) but seemingly have never asked them about life.  I mean 'asked' in any communication sense, not just speech.  Over a million autistic people in the UK, and too often, such trainers have none of them as personal friends, none of them as colleagues.  Isn't that odd?

Such trainers pass on the ancient myths, generation after generation.  They write them down, put them on Powerpoint presentations, and deliver them to you as if they are fact.   Research based in part on materials from the 1990s and 1980s, which was based largely on watching groups of profoundly disabled young men in a care home, as far back as the 1940s.   As far removed from a balanced view of autism as one can get, in fact.

Worse still, they often expect you to pay for this.  It might look slick, with excellent graphics, and the trainer might look like they could pose for a fashion magazine .  But...are you really wanting 1940s material?

Does it work, all of the Tragedy stuff?  Let's look at the outcomes after enduring decades of this myth-making and misunderstanding from some.

Are autistic people better employed?  No.
Are the autistic people who are in employment better able to disclose that they're autistic, safely?  No.
Do they have safer lives?  No.
Do they have better education?  No.
Do they have better healthcare?  No.
Do they have greater access to arts, culture, faith -  things that bring joy and meaning to life?  No.
Do many have catastrophic mental health situations from all the negativity?  Yes.
Do too many end their own lives, unable to take any more of it?  Yes.

I'm going to be quite clear that some places are excellent.  Some people are excellent.  Some trainers are excellent.  Some researchers, parents, teachers and people from all other groups are excellent.  I'm blessed with working with a lot of them.  I'm also going to be clear that yes, some autistic children need a lot of support.  And of course society needs to ensure they - and their families - get that. By all means direct such families to the autistic specialists and allies that they need to help them with their young person.

But, generally, the state of training on autism is of low standard and lacking integrity.  I've been in this industry a long time, and spent many years as a professional trainer on autism, working nationally and internationally with groups of all kinds.  What I see, and hear, from some of the bigger charities and groups, is very poor.  I won't name names, because that's unprofessional.

Do we need to do better than this now?  Oh yes, indeed.

So, how do we do this?

For a start, you need to ensure that your training is authentic:

Ask:  Whose company is this?  Is it led or co-led by autistic people?    Do you want training from people who don't have confidence in autistic people to co-lead?

Who designed and created the trainingAre they qualified to do so, either from lived experience and excellent train-the-trainer skills, or via a professional modern neurodiversity-friendly course?  Are they autistic people, perhaps in partnership with allies?  

Were they paid properly for that, at the same rate as the non-autistic people?  Think about your company's anti-slavery Corporate Social Responsibility statement.  You don't want to be teaming up with groups  who use autistic people as slave labour, and I'm afraid some do. Or, they pay only a token amount, way below living wage.  We're not slaves.  We have houses, families, bills to pay.  We need actual money, the same as everyone else.

Who is delivering the training?  Is it autistic specialists, perhaps with allies as well?

If the answers to that are 'no', you might be getting '1940s training', and perhaps perpetuating the awful lives that autistic people already experience through no fault of their own.

Insist on authentic, expert training from autistic-led teams and our allies.

Want good training from such teams?  People like me work with them, and run them.  Ask us.  Look for #ActuallyAutistic trainers on Twitter, for example.

Saturday, 9 February 2019

Autistic Children and Toilets: Misunderstanding the Difficulties

A disorientating digitally altered photo looking down into an empty toilet cubicle.

Many autistic children sense the world very differently from how many parents and teachers expect.

Above, an example of how an autistic child may see a room with a toilet and hand basin in it.  A tiled wall, a patterned vinyl floor surface.  Would you put your feet on that floor?  Could you work out what it was?  Could you even reliably find the toilet?

Now let's add in the 'smellscape'.  Perhaps air fresheners.  Toilet cleaners.  Hand soaps.  Wee.  Poo.

Then, let's add in the soundscape.  Noisy pipes.  The jet-engine-like flush.  The deafening smash of wee or poo hitting the water, and the terrifying prospect of freezing water splashing up.

Let's then add in the elements of freezing cold toilet seat, ice cold taps or boiling hot taps, the ice-cold metal of the toilet handle, the taps.  The searing rough surface of the hand towel, or the further deafening roar of a hand drying unit perhaps.  Then, of course, the pain of dragging clothing down in order to use the toilet....coping with the complexities of the toilet paper and what to do with it, where to put it.  Dragging clothing back up again, like someone using sandpaper against your skin.

This can be the most terrifying experience imaginable for a child whose experience of the world is turned up to 'max'.

For others, each noise and smell, texture and feeling is a fascination and a puzzle which needs exploring, and they may seek out those experiences over and over, trying desperately to make sense of them.

Some may experience difficulties with balance and co-ordination, or with internal signalling to say they need a loo until it's too late.  Or with the ability to point or signal that they want the loo.

To their credit, many autistic children endure all of this and actually do use the loo, politely, over and over again, and continue to do so for life.  No-one questions whether it's hell, or whether we could design such spaces in ways less exhausting to use.  So, let us bear in mind that most autistic children do manage to cope with this ridiculous scenario.

How easy it is for some adults to misunderstand why an autistic child may avoid using a toilet.  Some are so desperately afraid of these spaces that they will only wee or poo in a quiet, safe corner.  Often on soft material that disguises the noise.

"They're just animals - they just don't care - this is deliberate challenging behaviour - we must find ways to force them...."  We even have playwrights writing a horrible play which portrays autistic children as animals, using dehumanising puppets and this theme.

Oh my.  No.

Always, always presume competence.  Presume that the child wants to learn.  Always, always show respect and caring.  Take good advice from autistic advisers and our allies, who are experienced and expert.  Many are parents, many have vivid memories of their own of the challenges of such spaces.

If you are designing such a space, take good advice on that design.  Think about minimising the pain and the disorientation.

Instead of assuming that, since it's OK for you, it must be OK for an autistic child...think differently.  Because the answer to all of this isn't the child being forced into that hellish space.  It's about working with them to find answers to each part of that nightmare.  Thinking about making the visual experience understandable.  Minimising the smells.  Minimising the noise.  Using soft towels, soft paper.  Using clothing that doesn't cause terrible pain when it is pulled up or down. 

Work together.  Learn from one another.

Thank you for listening.