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 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? 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. 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  and 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. 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 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.