Interesting Presentation and discussion from Sir Simon Baron-Cohen

I understand the worry of the autistic community regarding research but I hope this Spectrum 10K study does get the go ahead.  Yes the research has to be done in conjunction with the ASD community but I don't think it should be delayed any longer than needs be.  The more information we have, the better we can educate the wider population and change their attitude towards ASD and all types of neurodivergent people.

Anyone see the program on Jay Blades learning to read at 53?  Dyslexia is another neurodivergent condition but people with dyslexia rarely achieved their full potential because the education system used to just think them stupid.  In reality, dyslexics have a very good imagination, high levels of creativity and are generally excellent at seeing the bigger picture (unlike us with ASD).

The issue is that once this research has been done, it can't be undone.  You are at the mercy of future decision making by politicians and health decision makers as yet unknown. In the US trans people were beginning to feel a lot safer, then Trump was elected and the trans community was suddenly in a very vulnerable position. I would also like to see such research done but global events do make people nervous about who might be in charge of their destiny in future decades and who might seize control of the resulting information. 

The issue is that once this research has been done, it can't be undone.  You are at the mercy of future decision making by politicians and health decision makers as yet unknown. In the US trans people were beginning to feel a lot safer, then Trump was elected and the trans community was suddenly in a very vulnerable position. I would also like to see such research done but global events do make people nervous about who might be in charge of their destiny in future decades and who might seize control of the resulting information. 

Yes, I accept that.  Historically, these things have come in cycles, and perhaps this cycle is reaching its closing stages.  In due course, there'll be others, I imagine, but in the meanwhile I'll try to hang on to some of your optimism!

I share some of your cynicism regarding the destructiveness populism has caused globally but I think there are some green shoots appearing regarding its decline. In the UK, I think doing what they like under the cover of both Brexit and the pandemic is coming to an end. Brexit is hardly mentioned now and Brexit slogans are virtually non-existent as a rhetorical come back for everything under the sun. Brexit is done and it hasn't been a success and more and more people have realised that. Also, the chief Brexiteers are on their way out with the Tory brand damaged.

There are now serious challenges to populism & authoritarianism in Hungry & Brazil while Russia's leadership is unpopular at home and Chile have managed to get rid of a hugely unpopular government recently. Trump and his cronies are under threat of lawsuits from every angle although I have to concede the situation in the US is still very worrying domestically. 

So not all bad. 

I'm aware that I'm an old cynic(!)  You might enjoy listening to this, if you haven't heard it.  Weirdly, I had just posted the reply above, then got in the car for an hour's journey, switched the radio on ... and caught the middle of this, which does seem extremely relevant to the discussion(!)  About halfway through they start talking about the relationship between autism and terrorism.  They do nuance it, and you have to listen to the whole thing. And I'm fine with it in the context of today.  But what if, in a few years, we had a Government that was even more right wing than Johnson/Rees Mogg/the ERG?  Or left wing?  Involvement in this would make you very vulnerable to an extremist Govt of any stripe.

The National Autistic Society is a big contributor to the programme.

https://www.bbc.co.uk/programmes/m0013swk (If the link doesn't work BBC i player / Terrorism and the Mind / The Mental Health Front Line / BBC Radio 4).  

I don't think I am as pessimistic as you about the future for the UK and I think it will be a long time before Brazil and Russia catch up - they seem to do a good job of having autocratic leaders that frequently reverse any gains they make but I agree that the free democracies are more pressure now than they have ever been since WW2.

Any research finding is a gamble to an extent.  We as the target community have to decide if, on balance, the outcome has benefits that outweigh any possible negatives.  

I suppose the upside of Spectrum 10K would be that we have more understanding of ASD, how it develops and how better to help those that it effects.  The big negative would be if they find a specific and identifiable set of genes that accurately determine if say, a baby or fetus has ASD which would lead to eugenics as has been seen with Downs.  I personally don't think ASD is that easy to pin down based on what I have read but it is a risk.

I’d like to think that.  But.

70% of US Republicans believe Trump won the US election. Large numbers of people in the UK believed a figure on the side of a bus that was a straightforward lie, even after it was exposed as such. Conspiracy theories are driving populist political forces all over the world, aided by commercial selfishness and the artful inaction of social media platforms. The UK Prime Minister was fired from two previous jobs for lying, and has (clearly) lied extensively in office, yet people still support him. On a more global scale we have an expansionist China, & a Russian leader who seeks to re-establish a previous world order.

Some of this political turbulence is happening under the cover of the pandemic. 

Even without all that, the NHS is financially a busted flush and the Govt has taken on historic levels of debt so the pressure to recoup cash is greater than ever. On a global scale the UK is generally a minnow - in the top 10 economies but not for long, with the explosive growth of the BRIC countries.  Being in the top 10 is misleading ... the difference between the top 3 and the bottom 3 is huge.  But the one big player we have in global terms is the NHS because of its unique business model and scale.  It has crown jewels worth billions, in particular data.

I’ve worked for three of the biggest global pharma companies and all regard the UK market as a small, with skewed economics; only the NHS makes it more worthwhile than other markets of that size. .

The NHS has huge amounts of data, and once NICE has given approval, can offer huge sales volumes in one negotiation; NHS 'use' is in practice indistinguishable from NHS 'endorsement' & that’s useful, too.  Because of the NHS, this small market is exponentially more important than its size would otherwise indicate. 

So the temptation to sell things off that shouldn't be sold will be huge; that will be unpopular so it will be done using guile, and deception, and weasel words.

We have a Govt which (until recently) was popular with the electorate, despite proven dishonesty. The lesson they'll have learned is that the electorate doesn't care about certain types of lie. If they can get away with it, they will.    So my level of trust is rock bottom.   

I won't be paranoid about it - if NHS doctors need to know things to help with my immediate healthcare, fine - but I'm a lot more circumspect than I’ve ever been about surrendering information where there’s no immediate benefit to me or a loved one.  Not saying I wouldn't, just that I'm careful about it, and less keen to do so than I have been in the past.  Spectrum 10K wouldn't be for me, at the moment, for all those reasons.   

We live in a generally liberal-minded nation with laws, transparency, democracy, and a media which is free to pursue stories that those in power don't like, but all of that - all of it - is under more threat now than any time in my life.  

I think that does affect the willingness of thinking people to place their destiny in the hands of others.  It’s not what the information would be used for right now; it’s what may happen in the future.  I’m less confident and sure about that than you are, I guess.

There is also the advantage of having such research conducted in one or more of the 'liberal democracies', where ethics thresholds exist, rather than in an autocracy, such as China, where ethics of any description are not evident at all.

I didn't think of that but you are right about research not being undone once it is done.  However, attitudes to those on the margins are more likely to change on ignorance not actual facts.  So research should help dispel myths but of course, with the nature of research, that is not guaranteed.  You never know what you might find when delving deeper.