Thursday 28 February 2019

Driving Whilst Autistic - The Research

A picture of a green Jaguar open top sports car

Updated 07 September 2020

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.

Buckle up...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 driving are which.

Bishop et al. 2017.   Small sample of 16 autistic people, mostly male, average age about 24. Used a driving simulator, not real life driving. Couldn't quite bring themselves to admit the autistic people were better.  But they were.

Brooks et al. 2016. Minimal performance differences were observed between autistic and non-autistic participants, but using a driving simulator again, not real life driving. Only 10 autistic people. Nothing of danger here then, but sample very small.

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

Patrick (2018) which looked at 50 autistic young people, compared to 50 controls (assumed non-autistic). Average age 20ish (so cannot say anything about older drivers and their competence when learning or driving after passing a test). Only 8 autistic females tested.  The test wasn't of driving at all, but of operating a simulator, probably under flickering fluorescent lighting.  Of the 50 autistic drivers, 16 also had a diagnosis of ADHD, whereas the control group only had four with an ADHD diagnosis.  19 in the autism arm were on stimulant medication and 24 on psychotropic medication, whereas numbers for the control arm were 3 and 3 respectively.  Use of medication and presence of other diagnoses may impact on driving ability, and this does not seem to be controlled for the study.  Only 15 in the autism arm had a driver’s permit (licence). 22 in the autism arm. The autistic drivers with no permit had only about 1 hr of driving experience compared to 9 for those in the control arm. The autistic drivers with permits had driven for around a year less than those in the control arm.  This is woeful research, and yet the DVLA were considering it when making directions around autism and driving. (DVLA Panel Minutes of 20 March 2019)

Reimer et al. 2013 looked at 10 young autistic males, and used a computer simulator, not real driving. Results: "The community controls and HF-ASD groups did not statistically differ in performance...
Two HF-ASD participants and two community control participants were involved in a collision while driving the simulated highway. The difference in speed from the posted limit and standard deviation of lane position did not vary by or interacted with environment, period, or HF-ASD status." In other words, both autistic and non-autistic people were similar in driving skills.

Sheppard et al. 2017 looked at 18 male autistic adults, age about 19, and noticed that slower reaction speed in viewing a video on a computer (not actually driving) was related in part to verbal IQ, not autism. None actually had a driving licence. "...there is no particular reason to predict that task performance would differ for females", they state, basing this on no research at all.

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. Yet, the average age for starting to drive is now 26, according to this study.  What is the purpose of only researching those younger than the average, one wonders?

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.

The new report from the Royal College of Psychiatrists at  clearly says, ".. It is recognised now that most autistic people are adult, do not have an intellectual disability and are likely to be undiagnosed.."  We really haven't found many of the autistic people yet, but we think we know all about them and their capabilities.

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.

We've made such progress with understanding the value of diversity.  Females, LGBT+ people, those from ethnic minorities including the Black and Brown communities.  We know a lot of the prejudice and myth when we see it, for those marvellous groups, yes?  But, for autism, we have breathtaking nonsense coming from some of the bigger charities, I'm afraid.  No easy way to say it, so there it is.

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 'lack of social skills' (No, the work of the DART team shows ours are different and as effective)
About ability. (No, it's not linked to a low IQ; we were using the wrong IQ tests).

About conduct. (Actually, autistic people are less likely to be criminals than anyone else).
About gender. (No, it's not just males).
About speech. (Most autistic people do learn to speak as children, and some are our best authors, poets and specialists).
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, or female).
About ethnicity. (No, it's not just white people).
About employment statistics. (No, it's not 16% in full time employment, it's a lot higher than that, but we haven't found that many autistic adults/we force them to hide and not disclose they're autistic).
About 'cost' to society. ( 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,  just at a different time.)
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 a minority who also have other situations/disabilities etc need significant support. In the same way, some females need significant support. Some males, some LGBT people, some People of Colour. We wouldn't dream of suggesting that everyone in those groups was incompetent, yes?)
About autistic people needing to be stopped from focusing on specialist topics. (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.  Also, Blind people can't do this, so what's the problem with autistic people not doing it?).
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. Most prejudice comes from untrained non-autistic people).
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 just fine as they grow up).

So, how on earth have we ended up with this many myths continuing painfully from one decade to the next, crushing the next set of autistic people, and the next, and 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.  

Well over a million autistic people in the UK, maybe 2 million - 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 1940s onwards, 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.  It's been like basing all of the information on better gender balance in companies by looking at women in a mental hospital in 1930 and saying "This is what all women are like!".  Just bizarre.

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?  I wouldn't touch some of it with a proverbial bargepole.

Some have put poor quality training online.  In as little as half an hour, you can achieve a pass in understanding autism....except you're doing no such thing. Most online courses are very poor quality, filled to the brim with the above-mentioned myths, and peppered with photos of a suitably unemployed-looking white bloke, loitering on a park bench somewhere.  As if this is something to do with the average autistic person.

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.

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 so do a minority of all adults, of any kind, autistic or otherwise.  And of course society needs to ensure they - and their families - get that support. 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 some of it is 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.  But dragging a token autistic person onto a stage to give you a three minute 'and this is something I crayoned when I was five' talk....unpaid of course....well, no.

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. Except they call it 'volunteering' (i.e. no offer to pay), or 'work experience' (i.e. no offer to pay).  Or, they pay only a token amount, way below living wage.   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?  I don't mind it just being allies for some courses if they are working firmly as equals with autistic trainers and advisers generally.

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

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

Know that 1 in 30 people in companies, professions etc is autistic, and already doing a great job.
Don't force them to spend a lifetime hiding, because of myths.

Thank you.

Research links?

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.