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...