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.