Monday, 25 May 2020

Autism and the AQ Test: Big Problems from the Big Questions

A white woman wearing a grey jacket and white top, thinking, quizzically. Above her head, question marks.

One of the most famous autism pre-diagnostic tests is the AQ test.  (Autism Quotient).   It's not a diagnosis.  But many autistic people use it as a guide for whether they go forward for a formal diagnosis.  The creator of this, Professor Simon Baron-Cohen, designed it as a "...valuable instrument for rapidly quantifying where any given individual is situated on the continuum from autism to normality". 

It can be found at https://www.autismresearchcentre.com/arc_tests  and a search engine will lead you to online interactive versions.

But, there are problems.  Many people since have discovered that it's actually not that accurate.  For sure if it's a very high score, the person is likely to be later formally diagnosed as autistic.  But in the 'middle scores', there's quite a lot of autistic people who don't meet the alleged score for 'perhaps you're autistic - go find out?'  So, they may not ever know that they are autistic.

Let's look at some of the questions, to work out why it's a problem.

"I prefer to do things with others rather than on my own".

Well, that depends.  What things?  What others?  Now, if you ask me if I'd like to go to (say) a mapping exhibit at the British Library, with a few autistic friends, I'd be leaping up and down with joy.  But, if you asked me to go to a party to chat randomly to some non-autistic people, I would rather hide under the table, thanks.   Actually, I'll be leaving about 20 mins after having arrived...

"I am fascinated by dates"


Well, as a fruit, they're quite nice.  But a bit sweet, frankly.  I prefer apricots.  What's this got to do with autism?  Wait....not that kind of date?  Well, it doesn't say that.  And I'm not that fascinated by dates & I don't know many autistic people who are.  Wrong question, badly phrased.


"I would rather go to a theatre than a museum"

Which theatre?  What's on?  Where's the theatre? Is the theatre accessible?  What's on at the museum?  We aren't told the answers, so I have no context to decide this.  This isn't an autism question either.


"I find it difficult to imagine what it would be like to be someone else".

Who?  I can imagine what it's like to be other autistic people.  But I find it very hard to imagine what it's like to be a non-autistic person.  And non-autistic people find it really hard to imagine what it's like to be us.  This is called the 'double empathy' problem.  See Dr Damian Milton's work on that.  Easy to find on a good search engine.  So, again, wrong phrasing of the question.

So many badly phrased questions.  The answers therefore are random rather than meaningful. 

Today, I might quite fancy going to the library, with an autistic friend.  Tomorrow, I might want to go to a board games party with another autistic friend.  On which day am I not autistic?  What happened to me overnight?!  Did the autism pack its suitcases and leave?


Particular cultures, ethnic groups, etc may have different answers to the questions.  Different expectations of what they would or would not do.  Different contexts for what is enjoyable.  Females may answer differently from males, for other questions.  What of people who don't use written language?  How do they answer it?  What of people who have a intellectual disability?  How do they answer the more complicated questions?

It has some uses, but it's a very 'blunt instrument', to use a phrase.

It's worse than that, though.

Some teams sneak the AQ questionnaire into their research projects to see if they can play 'spot the autistic'.  It's not always clearly explained that this is meant to be an autism screening test.  I saw an example of this only this week.  So, you've given a researcher data that may indicate you are autistic.  How safe is that data?  How kind do you think the world is, to autistic people?  See my other blogs on this...  The short answer is 'some are not very kind'.  That data can be used against people, alas.  It shouldn't be.  Autistic people are fabulous and wonderful and worth as much as anyone else on the planet.  But this is a world that too often thinks autism = deficit, and once you're identified, you may face a lifetime struggle to regain the trust and confidence of others.  For me, diagnosis was still a blessing overall, but I won't pretend that everyone is pleasant about it.  People's jobs and relationships can be at risk, if information gets released inappropriately.  Awful, but true.

We need to be very clear indeed when asking questions that are designed to screen for autism. 


We need to be ethical.  Sensible about explaining its limitations.  
We need to seek really good consent to obtain, and use, that data.

And we need to be sensitive to how those questions may be answered in very misleading ways.

As part of a much wider assessment, at the request of the person, it has some value, for some.  Autism is a different social communication system, a strong need for predictability and routine, a logical and straightforward way of encountering the world, and (often) a different sensory system.  That's what it should be looking for.  So, it may be useful, for some.  But that's as much as I can say about it.


Thank you for reading.




Sunday, 3 May 2020

Autism and The Myths around Violence

A row of children of different ethnicities sitting on a park bench, each reading a book

Above, a photo that is fairly typical for a group of autistic children.  Sitting peacefully, reading.  If you suspect I'm wrong, read on.  In fact, read on anyway....

We've had some strange myths that autistic children and young people ("CYP") are, on average, more violent than non-autistic CYP.

Is that so?

Let's look at the research.

First of all, about 1 in 30 CYP is autistic. All IQs, all genders, all ethnicities, faiths and backgrounds, and all sorts of different personalities.


Second, most autistic people care deeply about others.

If you want a run-through some modern general research on autism, rather than the stuff dredged up from the 1940s, I'd recommend the papers in https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html which talk about lots of new findings.  About honesty, integrity, the reason that our senses are different, & about why we need what we need...
And why a combination of bullying, ostracism and some approaches to 'dealing' with us have been an utter disaster which caused immense pain and distress.  Pain and distress in life is so bad that 6 out of 10 autistic people report symptoms of Post Traumatic Stress Disorder at some point in life, from the latest study.  Remember, if you will, that it's the autistic people who are supposed to be the problem...

So, where did this idea come from, that we were more likely to be violent?


I've had a look back through some old research. https://link.springer.com/article/10.1007/s10803-010-1118-4 is a bit of research from 2010. It's quite famous.  275 other research papers rely on the information in it.

OK, let's look at what this research paper says.  There were 1380 children age about 9 yrs old. They were part of a group where the parents were seeking support, so presumably had behaviours of concern already.  That's an important thing to remember.  This isn't 'all the autistic children in the country'.

Nearly all of them were male, which is odd.  Nearly 9 out of 10, in fact.
Their average IQ was 15 points below the average for the country, with some well into the range of learning disability.  So, this doesn't tell us a lot about females. In fact, it tells us nothing, as the researchers didn't separate out the info for females.

Let's start by recalling our own behaviour as a child.
Be honest with yourself: Did you ever, even once, push, shove, barge past, elbow, or hit another child, e.g. a brother, sister, someone in the playground? Oh my!  In that case, you are Violent.  Did you know that?

OK, let's look at their findings.  They divided the answers into four groups.  Here's the ones for the autistic CYP's aggressiveness to their caregiver (Mum, Dad, etc).

No aggression - 44 out of 100.

One or more episodes of rough play or defending themselves when attacked - 25 out of 100.
One or more acts of definite aggression e.g. perhaps a single hit, a single kick, some time in their life until now, 24 out of 100. 
Violence, ever, using something to hit the person with, e.g. a stick, 7 out of 100.

They looked at whether CYP level of actual violent behaviour of any kind was the same in different years, and noticed that by age 15-17, only about 25 out of 100 were showing any such difficulties, so three quarters were not.

The team didn't consider why the CYP might have hit out at someone, perhaps once in a lifetime.
Was it extreme pain?
Was it fear?
Was it emotional distress?
Was it utter exhaustion after barely sleeping for weeks?
Was it during a meltdown, which is strongly linked to electrical 'spikes' in the brain activity and seems to be a brain event, not any sort of actual deliberate planned aggression?
Was it actually self defence, but the parent hadn't realised it?

Was it in fact another health condition, etc that was to blame, not autism?  We're not told how many of the CYP also had ADHD, or conduct disorder, or a mental health condition.  Learning disability wasn't really factored in either, and we're told nothing about whether communication was enabled.  Not being able to communicate, and not being listened to, is such a source of anxiety for so many.
We weren't there for any of the incidents, so we have no idea what actually happened.  And we don't know whether it was in fact autism that 'caused' any of this.

And, this is 2010.  10 years ago, when we had found only a fraction of the autistic children.  Not most of the girls, not most of those from the BAME communities, not those who are quieter, not those who 'mask' their autism, so go unnoticed, peacefully. So many who were never in this paper.

What we have is a whole set of unknowns in this research paper.
What we do know is that nearly all of the autistic CYP in this curious bunch who were picked for this study were peaceful. Nearly 7 out of 10.

What we don't know from that paper is whether non-autistic children are less violent.  Like most studies, the researchers didn't bother to find out.  What was important was claiming that autism equals more violence, it seems. (I grow weary with the negative narrative about us.  Can you tell?)

Let's look at whether non-autistic children are violent.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3283570/pdf/nihms2126.pdf is a good starting point, by Tremblay and colleagues, 2004.

"B
y 17 months of age, the large majority of children are physically aggressive toward siblings, peers, and adults".Oh dear.  That rather spoils the picture of autistic children being the more violent ones, doesn't it.

"Three trajectories of physical aggression were identified. The first was composed of children who displayed little or no physical aggression. These individuals were estimated to account for ~28% of the sample. The largest group, estimated at ~58% of the sample, followed a rising trajectory of modest aggression. Finally, a group, estimated to comprise ~14% of the sample, followed a rising trajectory of high physical aggression.

So, only 14 out of 100 non-autistic children in this younger age group were peaceful, and the rest were being physically aggressive.  Remember the study for the autistic CYP asks if they have *ever* been aggressive.  Their figure was 44 out of 100, not 14 out of 100.

The autistic children are more peaceful overall, based on these two studies. It's not a fabulous match, of course, since the autistic CYP are older, in their study.

So, what else can we find to prove this allegation that autistic people are more violent, in some way?
https://www.sciencedirect.com/science/article/abs/pii/S0890856717301508


is a 2017 paper from a huge set of info in Sweden.  It looked at whether autistic people had more criminal records for violence.  Nope.   28 out of 100 of the autistic people also had a diagnosis of ADHD and/or Conduct Disorder. The study found that those, not autism, were linked to crime.   If an autistic person had neither, they were no more likely to be violent than anyone else.I've worked amongst autistic people for decades.
I've never met a more peaceful group, on average.  Many working in dedicated ways as (e.g.) Doctors, faith leaders, Nurses, care workers, parents, volunteers, academics, engineers, retail workers, etc. Peacefully, collaboratively.  Others unable to work for various reasons, and enjoying life in peaceful ways in various places.  A few, desperately in pain and showing huge distress behaviour that may appear to be 'violence'.  

If you had a friend who is diabetic, and they went into a diabetic episode where their behaviour became erratic for a bit and they pushed you out of the way, would you think of them as a nasty violent person that you didn't want in your life?  What about a friend who went into an epileptic seizure and kicked out whilst in the middle of that?  Are they a nasty violent person?

Consider that, and then consider how you view autistic people.
Let's look at what's done to so many autistic people.  Go back to that blog I recommended earlier and look at how many autistic people are beaten, raped, defrauded, otherwise assaulted, otherwise bullied, left out of things, ignore when they try to make friends.  Forced into painful and humiliating normalisation programmes.

https://learning.nspcc.org.uk/media/1042/child-abuse-neglect-uk-today-research-report.pdf

That link is a bracing NSPCC report into how many children and young people of all kinds experience violence and worse from some parents and carers in the UK.  Between 40 and 50 out of every 100, at some point. 
And autistic CYP are still more peaceful than other people, on average.  I say well done to the autistic individuals.

Exceptions apply, of course.  In any population of people - autistic or not - there will be some who are violent.  And, if any CYP is violent, obviously there needs to be proper thought put into why.  That's why autistic specialists work with parents and teams, to help find answers. To help spot triggers for events that perhaps others have missed.  All people who need support should get it.

But for sure I am mighty fed up with the narrative that autistic people are more violent.  That leads too many parents to say they don't want an autistic child, because such a child is going to hit them.  Actually, less likely than a non-autistic child doing so, it seems. On average.

It leads to too many groups throwing out autistic people 'in case we're violent'.


It leads to lost jobs, lost relationships, lost confidence, lost friendship opportunities, loneliness, and onto very poor outcomes around mental health and (for too many) wishing to take their own lives.

These are just starting points.  This isn't a formal essay.

But goodness me, they're important bit of information to think about, aren't they.


Thank you for reading.


















Wednesday, 15 April 2020

Autism Diagnosis in 2020


Nearly everything we thought we knew about autism has turned out to be wrong.  

Thanks to the hard work and dedication of thousands of people over the last years, we now know that autism never was a lack of caring about others. Nor was it all about young boys who were geniuses or spent their time biting people.  Nor do autistic people have low IQs on average.  So many myths. Those are just a few.

It makes the job of the diagnostic professionals pretty tough, because a lot of the old checklists and diagnostic tests are pretty useless now.  A lot of the old training in diagnosis is currently of less use than an inflatable dartboard.

I am not a diagnostic professional, but I am a well respected* professional in the field of autism who trains the diagnostic professionals in how to spot autistic people.  I'm also autistic, and work within the NHS systems as well as for a variety of organisations in this field, whilst doing a second Post Grad qualification in the subject.

So, what are we looking for?

I'll generalise.  All autistic people are people with our own personalities and experiences, our own combination of factors.  It's about 1 in 30 of the population.

The links for research mentioned are at 
https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html which also contains a lot of other eye-opening findings.

Here we go:

There's always a different social communication system happening.  One based on accuracy, completeness, predictability. Happiest with a flow of information, rather than a back and forth conversation about trivial social stuff.  In autistic culture, this completeness and accuracy is polite and expected, but of course it's not polite and expected in non-autistic culture, so we have a communication disaster happening from both parties to the conversation - the autistic person and the non-autistic person.  Look for Double Empathy Theory by colleague Dr Damian Milton for more details.   Autistic social communication is nevertheless generally really effective for getting a known task done.  You'll want to look at the DART project work.  The autistic teams won, in a communication task.  So much for it being a communication deficit, eh?


But...so many autistic people mask.  We may disguise that we are autistic.  Very often, we've practised and practised behaving like we're not autistic. Why? So we are not bullied or excluded.  Making painful and overwhelming eye contact that stops us listening to what you're saying.  Practising using non-autistic face expressions instead of our usual ones.  Desperately trying to make conversation the polite non-autistic way, instead of our own polite and effective information-flow way.  It's utterly exhausting, and we often can't do it for long.  Some autistic people can't mask at all, and they get diagnoses more easily (generalising...).  But many fail at the first instance, because a diagnostic professional has it in their mind that autitic people cannot make eye contact and won't express concern for others.  Oh my!


Here's a clue about empathy levels in autistic people.  It's backed up by research also.  We were misunderstanding what empathy looks like, because autistic people are using a different signalling system for it.

Moving on, most autistic people have sensory differences, and those are well worth asking about.  Intense differences, e.g. overwhelmed by background noise, especially in crowded places.  Or blinded by glaring or fluorescent lighting. Crippled by the pain from some sorts of clothing or shoes.  Overwhelmed by the smell of perfume or toothpaste.  

Most autistic people have deep, intense interests, though these can change over time.  Whilst the stereotype is of trains and maths genius, it may be musical, or collecting something that looks perfectly 'normal', e.g. handbags, shoes, etc - but it's the depth of interest, and the joy in having and assembling those items.  The deep need to engage, and the extraordinary expertise.  Also, perhaps the deep anxiety if someone wrecks it or moves it.

Most autistic people may have difficulties with processing our emotions in real-time, and may need a lot of thinking time to work out how to describe them.  Quite a few are also faceblind, so may struggle to recognise people just from their faces.

Most autistic people need things predictable, because we're trying to balance a brain that takes in too much sensory and social stuff.  So being able to predict the oncoming sensory-social load is as sensible as you being able to predict how heavy a bag is before trying to lift it onto a top shelf.  We're surrounded by non-autistic people who are vaguer than the vaguest thing imaginable.  "We'll be back in 5 minutes" (No, you won't).  "I'll give you a call some time tomorrow" (Aieee! When! This matters!).  "The meeting will start at 10 and go on to 12." (No, it won't). "Let's do lunch" (This doesn't mean 'let's do lunch...' Weird, eh?)  "It's raining cats and dogs (Er, nope, just rain).   We may assume that non-autistic people are non-functional and have never noticed this about themselves, but many non-autistic people imagine it's us who are at fault for needing accurate information.  Are you sure?

A good number of autistic people speak differently to how you might expect.  It may be that we don't use spoken words at all, or can only speak some of the time.  It may be that we speak with an accent that doesn't match the expected accent for our region.  It may be that we sound rude and pedantic, angry and uncaring....when that's not even slightly how we feel.  I'm sometimes not able to use spoken language, so I use technology when that happens.  Not a problem. That's what technology is for.  Lots of autistic people find telephone calls difficult or impossible, so that's sometimes a clue.


Many autistic people are so sleep-deprived that we run out of ways to organise our lives.  Some also have ADHD, which makes organising things very tough indeed.  This kind of executive function difficulty was assumed to be part of autism, but some emerging research suggests it's actually exhaustion/ADHD/both.  Ask about sleep, and indeed about stress, anxiety and depression.  Many autistic people end up with those because of life and the way we're treated, not because of 'autism'.

Think about friendships and relationships.  A lot of diagnostic professionals get into a difficult situation here, because there were old myths that autistic people didn't care about others, didn't want friends, and certainly couldn't have relationships.  Gee, do we know better now!


Lots of us have friends.  Autistic friends.  Possibly autistic friends who don't yet know they're autistic.  Interestingly, most of my friends had no idea they were autistic, but over the years had sought diagnoses and indeed received them.  So, ask about what kind of friend they are.  How do they engage with those friends?  If it's late nights with board gaming, that may be a clue... (generalising, remember!).

Some autistic people are desperately lonely, and will describe professionals and carers as friends.  It's a reality, but it may lead to the wrong tick on the form, so reflect on it carefully.

Some autistic people think they have a friend, but what they actually have is a manipulative person who is using them for stuff.  Check carefully. Lots of narcissists, for example, enjoy keeping a tame autistic person as a friend, as someone who will be a willing audience and compliant slave 24/7, but there's no meaningful friendship happening there.


Relationships - yes, a reasonable number of us can and do have successful loving relationships, often with other autistic people.  Be aware that vast numbers of autistic people are part of the LGBT+ communities.  Some autistic people have a terrible time with relationships due to misunderstandings, or due to finding predators rather than loving partners.  But for sure most do want a good relationship.

Jobs.  Myths aplenty about us all being either computer geeks, or people who yearn to stack shelves in supermarkets.  Heck, no.  Well, OK, some might.  In reality, our interests and abilities are as varied as anyone else's, and there are load of autistic faith leaders, healthcare workers, artists, musicians, Psychologists, Psychiatrists, etc.  In the decades of working in this field, I'm overrun with people in the professions who approach me to say, "Er, I'm autistic, but I daren't tell anyone else, because of the myths and prejudice out there."  Let's stop that, eh?  Goodness me, they are fabulous people.  In fact, all autistic people are, whether working or not, and in any role.  Studies show clearly that the large majority are either working, volunteering, caring for others, retired, or in academia. But...so often have a lifetime of struggle against non-autistic politics, presumption, prejudice and predators (the four Ps).  So many are underemployed, or have to move endlessly from one job to another after managers decide that they 'don't fit', or that really simple adjustments to the workplace are 'too impossible'.  Code for 'we don't like your sort', alas.

Talk to them about brain events.  Either meltdowns or shutdowns.  The latter may be more common, but little talked about and little examined. Both are believed to be connected to epileptiform spikes in brain activity, not to 'bad behaviour'.  A lot of autistic people get shouted at a lot for shutdowns, as people assume we're not communicating in a conversation because we can't be bothered.  If it's a shutdown, we literally can't.

Look at the medical history.  Often there is a trail of misdiagnoses or co-diagnoses as long as your proverbial arm.  Depression, anxiety, query personality disorder, vague attempt at calling it schizophrenia but that didn't seem to fit...maybe eating disorders.  But because they don't 'look autistic', no-one thought about autism.  Anecdotally, a good number of Clinicians mention that autistic people respond very differently to standard medication.  I leave that for the medical profession to contemplate further.


These are just some ideas, but they are so important to think through when you have a diagnostic interview to do.  The forms and process doesn't always make it easy, but I work alongside fabulous diagnosticians who have thought hard about adapting the forms to put in the modern understanding from research, and indeed writing reports that are collaborative, kind, affirming and appropriate.  Reports that acknowledge strengths, as well as suggesting practical strategies for improving life.

No autistic person ever woke up and hoped to be called a Deficit, or a Disorder.  Not even if it says so in the DSM-5 or ICD-11. Let's find kinder words, eh?

Why does it matter, getting a diagnosis?  It might not, for some.  For others, it might be the most important thing that has ever happened for them.  A way to understand themselves.  A way to explain themselves to others.  A way to connect with other autistic people, and learn their own culture, their own forms of natural communication, their own history.  And share in the collective future of autistic people.

We used to see autism in terms of a deficit that no-one wanted.  For some, that may be how they feel.  That's valid, if so.  But for an increasing number of us, autism is who we are, and learning to navigate our differences and our difficulties is best done as our authentic autistic selves, working with allies, and shaping a future which is kinder for everyone.



*although I believe the word 'notorious' has also been used, given my academic challenging of poor practice...



Who is welcome? A reflection for churches, during online times.


The cartoon above is one I value highly.  David Hayward, the artist, makes powerful points about our faith as Christians, and how it challenges our thinking. 

There are lots of good faith spaces being created. I am blessed with being in a few of them.  There are lots of good faith leaders.  I want to start by saying those things.

The illustration shows various people drawing boxes...and Jesus using an eraser to erase the lines they are drawing. 

This is a pandemic.  
People are afraid.

We may put people into 'boxes' in our minds.  Especially at a time of crisis.  

"This group is allowed in.  That group does not belong.
If we allow people like that in, it will change the character of this group.
I am the leader.  It is my decision who stays in this group, and who goes.
Some people are Too Much Trouble and we need to protect the group from them. Look, I'll demonstrate how much trouble by dragging up some things from the past, out of context, ignoring my own mistakes, to prove how we should all hate and fear Those People".

It could be anyone who ends up in the reject pile, in emergency situations, in new situations.
People from BAME groups.
Women Clergy.
People from the LGBT+ communities.

People who look 'a bit rough' or speak 'a bit funny'.
People who are too old, too young, too poor.
Disabled people.
Neurodivergent people.  Especially anyone who is autistic [We all know 'their sort' are bad, eh?*]
People with mental health conditions.
In fact, anyone who might take up too much of our time (allegedly).  After all, it's not like anyone else in the church could take responsibility for settling in anyone who needs support, eh?  Or set gentle guidelines and refer on to external support services if needed...

Just some of the groups who have found themselves outside of that line.  Outside of that community.  Outside of that circle of co-support and co-caring.

And there's Jesus, patiently, loving, faithfully, endlessly, erasing those lines.

Asking us to reach beyond those barriers of fear and uncertainty, of misunderstanding and of lack of personal responsibility for our own reactions to others who are different.

Asking us to love one another, and ourselves, and God.

Seeing in one another that which is Jesus.

Challenging us to think, "Would I whisper bad things about Jesus, to stop him getting into the group?  Why am I doing this for this beloved person?  Why am I gatekeeping for God?  Do I think that God wants me to do this?"

There is no more powerful statement from a leader of God's churches than, "You do not belong here."


All belong.

And the role of a leader is to examine their own responses, their own planning, their own resourcing.  To ensure that, when the lockdown is over, and churches are back, they haven't created a hostile group, afraid of outsiders, afraid of being 'overrun by that sort'.  Or created a sub-class of 'people who don't actually belong, but we might as well put them in some other place, so they know they're not part of our Real Church.  The people I shake hands with on a Sunday or weekday service.  Real worshippers'. 

We're called to love, and to pray.   To be friends to one another.

Let's do that.  

God will provide the rest.





*I'm autistic.  I hear this a lot.  Despite the clear research showing that on average we are as kind as others, as generous, less violent, and less manipulative.




Tuesday, 7 April 2020

Staying Safe versus Slippery Slope: Autistic Children during Coronavirus Lockdowns

A Black child having fun  in a field by themselves
I will be careful in what I write.

We are in the middle of a very serious Coronavirus situation.  It's really important that everyone does their best to avoid getting the virus.  And it's really important that everyone does their best not to give the virus to other people.

There are lots of good Government advisory details.  For example https://www.gov.uk/coronavirus  and https://www.gov.uk/government/publications/coronavirus-outbreak-faqs-what-you-can-and-cant-do/coronavirus-outbreak-faqs-what-you-can-and-cant-do which e.g. tell people to keep a safe distance where possible, and wash their hands properly.

It also tells people when they can go outside.

Each country will have its own rules on this.  It's important to follow those rules wherever you can.

And, having said this, I'm seeing too many cases in the media where (for example) a desperate parent has taken their autistic child out for a play in a field, by themselves.  Just the parent and the child.  No-one else in sight.  Not touching other stuff.  The child may need to get outside for familiarity to stop meltdowns or shutdowns, to prevent these awful, exhausting brain events (now believed similar to a form of epilepsy, not a bad attitude).  To prevent the long term anxiety and trauma for the child from experiencing them endlessly.


The parent gets shouted at.
How DARE they be outside, a safe distance from other people.
How DARE they not be in their house.
If they go outside, EVERYONE will go outside and do what they're doing.
They are Putting Lives at Risk.
They're using their child as an EXCUSE.

Frankly, it's not very kind, and it's usually not very right.

The 'slippery slope' argument....that if one person does it, everyone will do it...well, that depends whether we think that no-one is capable of understanding the reason for that autistic child being in a field with their parent.  That perhaps because of a need to avoid meltdowns/shutdowns, this is important for their health.  That this is a kind thing for a society to do, to allow people to stay safe and healthy in the best possible way they can find in that moment.  Without it, meltdown after meltdown may well lead to injury and hospitalisation and greater risk of catching the virus, for them and for the parent.

This isn't a naughty child getting something that another child can't have, selfishly.
This isn't a parent who is deliberately getting something 'better' for their child as a selfish excuse.

This is a parent who is perhaps keeping their autistic child physically and mentally safe, whilst also staying away from other people.


Yes, there will be some autistic children who are fine and safe indoors all the time, or on one standard walk round a street.

There are others who are not.

As a society, we need to do our absolute best for one another.  And that includes showing compassion for children and young people (and indeed any adults) who may be at very real risk from the terrifying changes of routine and inability to move freely.

France has done well, with this.  
https://metro.co.uk/2020/04/02/france-eases-lockdown-autistic-people-can-go-reassuring-places-12499265/ allowing autistic children extra exercise, to keep them safe and well.

We can do similarly, working with local families to find safe solutions for them.  The new guidance from the UK Government allows for exercise more than once a day, where needed (safely).  See https://www.gov.uk/government/publications/coronavirus-outbreak-faqs-what-you-can-and-cant-do/coronavirus-outbreak-faqs-what-you-can-and-cant-do?fbclid=IwAR1Lb1rj6LAKKLeG5QFQA_gM-smFl0nOwLj7OAFS47gJ9NsJXOpgxRSgo6U part 15.  As an autism adviser working with the NHS, I recommend that any autistic person who has an autism related need to exercise safely more than once a day does just that.

So, if you see a child who is nowhere near anyone else but a loved family member, exercising, (maybe an extra walk at a safe distance from others, maybe playing a game with a parent, away from others) consider whether they may have an invisible disability or a neurodiversity such as autism, and whether this is a vital part of them staying safe and well.

Am I saying they should be free to spread virus over public surfaces e.g. swings and roundabouts?  No. I am talking about e.g. running around playing their own games in an open field, not breaking into sealed-off playgrounds. 

Please give a child with a parent/carer the benefit of the doubt, and encourage others to understand that there may be very real health reasons for a rule being different for different people.

Thank you for reading.

Sunday, 15 March 2020

Coronavirus, Autistic Patients and Hospital. Top Tips for Teams


1 in 30 of your Coronavirus Covid-19 patients is likely to be autistic. That's the number of autistic people in the population.  It's a lot.  How you enable their care will make a big difference to outcome.  Ideas have to be doable.  After all, you have a lot of patients.  So, here's some fast tips.

Above, how a medical room looks to me, as an autistic patient.  A personal example. Blinding.  The strobe-light effect from fluorescent overhead lighting, which some of us experience.  The stench of medical chemicals.  The utterly deafening background noise.  The awful pain of medical examinations, thanks to a different pain and sensory system.

Autistic people may need some stuff to happen, to help raise chances of a good recovery.  None of it is hard, and all of it may help others too.  Remember that autistic people are of all ages & backgrounds, genders and IQs, & may do any job, including healthcare roles. 

Here we go:


1.  Look for info.  From the person. (Most of us can talk, though of course in an emergency with this virus, maybe not).  From a loved one in their life, or a carer if they are one of the small number in care services.  An Autism Hospital Passport, e.g. at 
https://www.autism.org.uk/about/health/hospital-passport.aspx or maybe an autism ID card with handy hints on it.  If they cannot complete the form, can a relative help with this, perhaps?  Put the form somewhere where teams can glance at it for ideas, often.

2. Check whether they use noise cancelling headphones, or sunglasses to cut down on background noise and glare.  These make such a difference to many. Keep glare from overhead lights out of their eyes where you can.

3.  Be really clear.  None of this "I'll be back in five minutes", when you actually mean, "I've no idea at all when I'll be back, but it may be between 2 and 20 minutes".  That will cause huge anxiety.  Say what you mean.  Exactly what you mean.  Calm, clear, short, accurate statements.

4. Be gentle, wherever possible.  We're not joking when we say something hurts, or when we scream in pain.  Quite a few have hypermobility syndromes that can impact on joint pain levels etc.  Using an oxygen mask?  It may help to cushion or smooth the edges in some safe way, to take away the feel of something stabbing the skin.  Be aware that some won't know how much pain they are in, so a standard pain scale may not have meaning.  Collaborate with them and with carers to get best answers.

5.  Also be mindful that our bodies can give useless feedback on how we are.  Made worse by a lifetime of some being trained to always say we're fine.  Use your medical skill. Check it out, using whatever quick, gentle tests you have to hand.


6.  Many of us use repetitive sound or movement, especially when stressed.  Might look strange, but it's a good coping mechanism.  Don't try to prevent it unless it's clearly dangerous for us to be doing whatever it is.

7. Do allow items of comfort and meaning to be left with us, wherever possible.  Or, if possible, additional visits or contact somehow from a loved one (where that can be made safe).

8. We're already likely to be desperately short of sleep.  Anything you can do to encourage rest, in a quieter area, with lower light levels, is going to really help.


9.  Quite a few will respond to the pain of rough hospital gowns by trying to take them off.  It's similar to you being forced to wear barbed wire or sandpaper.  Got anything that isn't rough to the touch?

10.  Allow thinking time for questions, if the person is able to respond.  And try where possible to keep to the same team around that person, so they get used to communication and subtle signs of difficulty.

Lots of the autistic - led organisations can provide background help and support.  Reach out to them.

And thank you for being on that front line, putting your own life and health on the line to help others.

It's truly appreciated.

Thursday, 20 February 2020

Why The Right Info Matters

Image of paper cut-outs in different colours, each the shape of a person
It matters that we know how many autistic people there are.
It matters that we know which proportions of them are living in (for example) independently, or with family, or in care homes, or in community with some support.
It matters that we know how many are working, or parents, or carers, or students, or retired, or in need of particular care.

It matters that we know how many of them may also have a learning disability.  How many may also have ADHD.  How many may also have epilepsy, or anxiety, or depression, etc.  How many may need alternative communication methods.  How many need adapted buildings, and what generally helps.

In times of misinformation, where anyone can take to social media and publish nonsense in a few seconds, it matters even more that the info is right.


Governments plan, using that info.
Budgets are set, using that info.
Staff are hired and trained, and sent out to do work, using that info.

Charities can plan services around the numbers of people, confident that they have reliable information for funders and for their needs.

Autistic people can begin to feel confident that there's a good general understanding of how many of us there, and what sort of things we might need.


Of course, every actual service for an individual is about meeting that person's own needs, and that will vary.  I absolutely agree with that.

But, it would matter a lot if (for example) a school had 35 wheelchair users in its building, and only one accessible loo for use in break times. 

It would matter a lot if someone was organising training for learning disability nurses, and none of them were told of the number of people in care settings who are also autistic (or likely to be, but not diagnosed yet), How could they get trained on autism if their management doesn't even know it's a need?


It matters.

The right information also saves lives:

Autistic people can be put into painful, exhausting, terrifying brain events time after time, day after day, by services and environments that are wrong for them.  Fluorescent flickering lighting, air conditioning that shrieks at a frequency that makes a room deafening, staff who turn up drenched in perfumes or aftershaves.  I've lost count of the number of times staff have said to me, "We didn't know we were likely to have any autistic people in this service.  We never planned for it.  It is important?  It's just a bit of extra difference, sort of a different personality, likes routine, yes? We can deal with that with no special training, and they'll be fine in the same places as everyone else in the service, honest." (Paraphrased).

The end result is too often those brain events leading to distress behaviour, injury, sometimes death.  Brain events appear linked to forms of epilepsy, and that is a significant cause of death for autistic people.  It matters that services don't know, and can't plan properly.


We also have a whole multi-£million project set up to solve the 'problem' of the alleged vast numbers of autistic people who are allegedly utterly nonfunctional, and allegedly all costing society over £1 million each.  We see paper after paper declaring how those fabricated numbers mean it's better for society that we're no longer here, as society cannot possibly afford that alleged financial burden.  How it was unreasonable to expect society to provide extensive care for that many. That pre-birth choices could be invented which will  mean parents never need face the alleged horror of a child who (they are told) is certain to need a lifetime of extensive and expensive care, a lifetime in nappies, unable to speak (that's something I've been told repeatedly over many years...).  It's utterly horrifying stuff, such finance-based-eugenics-talk. It's resulted in very real discussions about how to erase autistic people entirely.   It came from misleading information, repeated often. 

Interestingly, when I did some background work on how many people are incontinent, the figure for autism wasn't really any different to the figure for the rest of people...but that's another story...

I campaign hard for the equality and worth of every single human being.  I won't have eugenicist policies. Not for autism or anything else. I don't want society going down that path again, ever.  But there are others who have no problems at all in viewing people as working-units and saying that if you can't earn X, you're a useless blob who should be erased.  Not quite in those words, but that's the underlying message.  It denies the full humanity of so many people, every single one a precious and loved person.

So, the numbers matter.  They matter for getting the right structure in to support people as and when they need it. And they matter in a discussion about eugenics and the future of humanity.  We've already seen too many very wonderful lives extinguished because of near-hysteria over 'cost to society'.   Research Down's Syndrome, if you want more info on that.


We can do two things:
Bring to light the full humanity, the full wonderfulness of every human being. 
And make sure that people have information that is based on accuracy, not hate, guesswork, ancient data or political spin.  Then we can make sure services have the right provision and training, in which they can tailor person-centred support that works.