Saturday 24 August 2019

So, is autism now overdiagnosed and vague? Well, no.

Recent research (link below) and key researcher interview suggested that diagnostic teams were getting too vague in the way they diagnose autism. That there was now little difference between autistic and non-autistic people. That it was too easy, and that people could get a diagnosis for trivial differences in numbers of friends, or if they found clothes to be a bit scratchy. This, from an online article re the research.

Is this true?

Let's have a look at their research paper.

I sense that we're not off to a winning start in the opening paragraphs.  "..our understanding of autism has evolved from a narrowly defined clinical picture to a spectrum of conditions of uncertain similarity".  Well, no.  We dropped Asperger Syndrome and PDD-NOS etc, and we dropped the assumption that autism = learning disability or autism = no speech.  So in my view, the criteria became more clear, not less clear.

Picking up pace, the authors then assert, "
There has been an increase in the prevalence of autism from less than 0.05% in 1963 to 1.47% among children aged 8 years in the United
States and to more than 2% in studies measuring lifetime prevalence through less stringent case ascertainment".  Translating for those who don't speak academic, a cheeky assertion that diagnostic people got sloppy, which is why there's now more cases.

Well.  That'll make for some frosty receptions with diagnostic teams, I'd say.  Most of whom are highly professional people who are trying to keep up with modern reality around autism.

Let's step back and think about the ancient myths of autism.

That top picture, on this blog.  Imagine that's a few hundred people.  All of them autistic.
All share the same naturally different body language and social communication system (although many have had it 'trained' out of them, so they no longer dare use it).
All have a passionate focus on topics, some becoming world experts in those.
All have different sensory experiences, some of which may be difficult in what is now a busy, noisy world.  But, sensory experiences and differences that can be of value, can be a great source of joy.

All are people of worth, whatever their set of characteristics, whatever their additional diagnoses.

Way back in the 1940, a couple of people identified the ones in the circle.  Young, white boys, little communication, introverted, really different behaviour, etc. They were believed to lack empathy, to lack 'theory of mind', to lack the ability to plan and learn skills.   "That's autism!" they declared, more or less. The belief, that they were like that for life.  It was an idea that kept going for decades.  In fact, some still believe the myths.  So, is that autism?

It wasn't.
Because some autistic people are other genders.
Most are older than child-age.
Some are extraverts.
Some are People of Colour.
Some have learned to 'act normal' to avoid punishment and ostracism, thus are masking their autistic characteristics.
Nearly all have learned to talk using spoken language, either at a normal point in development, or later on. A delay, not a deficit.  Although autistic communication is meant to be different.
Nearly all have developed good practical theory of mind; it was a delay, not a deficit.
Nearly all learned skills.  Some are absolutely brilliant at planning.
So, just about everything we thought we knew about 'autism' turned out to be a misunderstanding.

All are likely to have terrible outcomes in modern society, due to the early myths and misunderstandings. And due to what we now know about the prejudice of non-autistic people, who are likely to form an instant dislike to autistic people based on instinctive misreading of our body language.   Bullying, ostracism, assault, refusal to provide adapted environments, refusal to provide education, refusal to provide accessible healthcare, normalisation therapies until people break from them.

Suicide rates breathtakingly higher than the standard population.

I would suggest the very last thing we need is for a researcher, no matter how notable, to pop up and say diagnoses are now trivialised.  It's like saying, "We need to stop diagnosing people as Deaf.  In the old days, we'd only diagnose them as Deaf if they showed wild behaviour and no empathy, but now, gosh, they'll diagnose anyone as Deaf!  It's trivialised Real Deafness."  Bizarre stuff.

The amount of effort families have to put into obtaining a diagnosis.
The exhaustion, the anxiety, the dreadful wasted years without support, because the system doesn't yet recognise most presentations of autism sufficiently well. Or doesn't expect some groups to be autistic. People given incorrect diagnoses, incorrect therapies, incorrect treatments.  The damage from that.  People left to rot, quite frankly.

Dr Mottron suggests that, in his view, real autism was a lack of any interest in other people.
He is concerned that people are being diagnosed who actually have friends.
Well, for one thing, the 'we're not interested in other people' mantra always was a myth.
Secondly, in the last couple of decades, technology has allowed us to find one another, and develop the friendships with other autistic people that we were lacking.  If we recall, many autistic people were barred from socialising with their peers, in case they made each other more autistic (I kid you not.  Much like refusing to let Black children play with other Black children, in case they get more Black...).

Try sending a child who finds labels scratchy to a diagnostic professional and see if you can obtain an autism diagnosis.  Try it.  I guarantee that you won't get far.

I've no idea what was in the mind of the researcher.  Perhaps it was a bad day when they finalised the paper.  But my goodness me, it's nothing like reality.

Thank you for reading.

Monday 19 August 2019

"But I work with Real Autistic People Who Can't Communicate At All!"

The painting is by George Frederic Watts, and is called Hope.  It shows a lone blindfolded figure sitting down and holding a lyre harp, their head close to its remaining string.

For me, it says something about the desperation for communication, joy and freedom which is felt by some autistic people trapped in some care home settings that don't understand autism.

It's a regular thing that a care home worker or behavioural enthusiast will pop up to say to people like me, "You don't know anything about Real Autism.  We do.  We work with Real Autistic People in care homes and they can't communicate at all. They spend their day screaming and self-injuring.  That's Real Autism."

Oh goodness, no, it's not Real Autism.

That's distress behaviour.  Not autism.

We need to be clear about our duty as human beings to do our best for one another.  To enable safety, trust, affirmation, and most of all, communication.

I spend a fair bit of time in care home settings, co-assessing care alongside other professionals.  I've worked alongside and with hundred upon hundred of autistic people of all kinds.  Those able to use spoken words, and those not able to, and all those in between who, like me, are sometimes able to.   Those who have been given additional diagnoses of learning difficulties.  People of all kinds.  Much appreciated.  For me, an absolute joy to spend time with, and to listen to.  I'm autistic.  I have an autistic son.  I'm post-grad qualified on the topic.  I train NHS teams, amongst others.

Communication isn't always about words, especially when you spend the first ten years of life not having a clue what spoken words meant.  That was me.  

In our family, we communicate mostly in autistic language, not non-autistic language.  It's a different system.  The work recently by Crompton showed how effectively autistic people can communicate and collaborate with one another, and how easy it was for miscommunication when partnered with non-autistic people.  We really do have our own language and culture, when enabled.

So, what of the alleged 'real' autistic person, screaming in distress and self-harming?

We need to be able to decode this, and resolve it, because this is distress behaviour, not autism.  And it is communication, loud and clear.  

Suppose they are hitting their head?:
Could they have  migraines?
Is it tooth pain?
Jaw pain?
Eye pain from undiagnosed glaucoma or similar?
Sinus pain?

Supposing they have collapsed on the floor, or are using their body in 'wild distressed ways'?
Could they have undiagnosed hypermobility syndromes such as Ehlers Danlos, which is a common (but little thought-about) co-occurring thing?  That can cause pain, balance difficulties, difficulty standing.  POTS is another possibility, where there's an error in how the body gets enough of the right blood round itself when someone stands.
What of Restless Leg Syndrome, (which can affect any limb) and can lead to a desperation to move or kick out to get rid of the pain and discomfort in the limb?
Could they have injuries of any other kind?
Are they ill
Do they have CFS or similar?

If they seem frustrated, could they be bored to tears, having been given the wrong IQ rating because teams were using the wrong IQ test for autistic people for decades. Many have a normal or higher IQ, but are given simplistic tasks, teams believing they can do no better.

If they are experiencing meltdowns regularly, have they had a checkup from a brain team?  The recent research showing many meltdowns are linked to epileptiform activity in the brain is interesting, and of course vital to understand.  Not 'autism', but potentially a form of epilepsy?  More research is happening.

What of communication?  Have teams engaged a really good Speech and Language Therapist who specialises in autistic communication, to work with the person on ways they can communicate best?  Whether movement, sign, technology, speech or otherwise?

What of the sensory environment?  Starting with their own body and the clothes and shoes on it.  Are they too tight, too loose, with seams or labels that scratch and dig in, causing immeasurable pain and discomfort?

What of the rooms they encounter?  Are they lit with lighting that is so bright or flickery to their eyesight that they cannot see in the space, and are totally disorientated?
What of the soundscape?  Get a decibel meter (easy to get apps for a smartphone, for this) and see what areas have sounds above about 25 decibels.  That can be deafening.  You'll find it is just about everywhere in most care homes.  The quieter ones often have people thriving.

Sleep.  Or rather the lack of it.  Common for autistic people because of all sorts of factors, including uncomfortable scratchy nightwear, sheets that feel like sandpaper, beds that creak like a ship at sea when they move.  Noises from the hallways and adjoining rooms.  Endless flickering light in bathrooms nearby etc.  Sleep disorders to do with melatonin or similar.  Anyone who is regularly without sleep will be irritable.

Fear.  So many autistic people are living with undiagnosed trauma conditions because of past maltreatment, especially those who communicate differently and cannot easily say what happened to them.  Are they in fact terrified of someone they work with right now?  We don't need to go far to read of the horror stories of a few care homes and the cultures people endured in there of mockery, scorn, violence and worse.

Coercion.  Are they subjected to inhumane coercion methods from some fairly fanatical behaviourists? (ABA, or those ABA fans who claim it's PBS but it's actually pure ABA).  I say plenty about professional concerns on this subject in other blogs of mine.  I see people left in a terrible mental state by some behaviourists.  Being clear that some are kind people who adapt techniques to be collaborative and joyful, and I don't mean them.

There are simply so many possible reasons for distress behaviour.

We do no favours to people in care home settings by claiming their distress is 'autism'.  It leaves people at grave risk of poor outcomes from undiagnosed health situations, for a start.

We need to be proactive.  We need to get in autistic specialists, who work alongside other professionals such as Occupational Therapists and Speech & Language Therapists, and help decode what's happening.  Translators, allies, able to see and sense the sensory difficulties that teams would otherwise be guessing at.

We need to stop the idea that distress is 'real autism'. We need to stop the idea that autistic people don't and can't communicate.  Above, just ideas.  Not a full list.  But I hope it's given you a starting point.

Every autistic person is a person of worth, a person who deserves to be listened to, and respected for who they are.

Working together, we can bring about good outcomes.

Glad indeed of the work I do with teams across the country who want to effect positive change that is fit for autistic people, and fit for the 21st Century.

Thank you for reading.