Autism is genetic

[jonesonscam]

The National Autistic Society has just said something pretty significant: Autism is genetic. Not “possibly genetic”. Not “we’re not really sure what causes it”.

After reviewing 83 research papers, the NAS is now stating definitively that autism is genetic. You’re born autistic and you’re autistic for life. Most autistic people are autistic because of genes they inherited from their parents.

I think this matters enormously because for decades, autism has been surrounded by nonsense about vaccines, parenting, mothers doing something wrong, pregnancy, diet and a million other things.

It has left parents blaming themselves, and autistic people being told that something caused them to be autistic that could somehow have been prevented.

There isn't an “autism gene”. Thousands of genes are involved, and genetics is complicated. But the basic message is now remarkably clear: autism isn't something that happened to someone. It's something they were born with.

That matters because when we stop looking for something to blame, we can start looking at what actually matters: understanding autistic people, supporting them properly, and making a society that works for them.

This all feels like a pretty important shift.

Nope. You send them the press release and it gets modified, you can correct it if it's wrong but the positivity of language stays.

There is a radio show on the radio 4/world service called more or less that digs into the research behind the headlines and it amazing how often the research has been misconstrued.

A recent one I looked into was about bird feeders being bad for birds. The type of bird feeders that the BBC quoted as being particularly harmful due to harbouring bacteria were actual found to have the least bacteria and would be the preferred bird feeder.

It is one of the things my partner finds difficult as he then gets contacted by family or patience asking if they can be part of his work or get access to the drug etc and he has to tell them that it's in early stage research and isn't yet in animal models never mind human trials. It gives false hope for those suffering and looking for any glimmers of hope. On the flipside when research identifies harm it terrifies those at risk. There are metrics about public engagement for research and getting the research into the open helps with funding but it's a delicate balance.

How irritating for the scientists. To have someone interpret or rather, misinterpret what your work has found. And communicate that with a form of words which do not reflect what in actuality science has found. And give a meaning to the work done that could be quite wrong.
And how awful for the general public. Who then lose faith with science.

No, Drs and scientists are actually very careful to give caveats, likelihoods, possibilities, chances of, in particular circumstances. If you read enough research papers and studies you'll see this

Its the reporting that changes this into 'this is the case'.

The one thing about Drs and scientists is they will always announce something as a definite. They rarely say ‘ we think’. But ‘ this is definite’.

You couldn’t be more wrong, and I say that as a scientist.

Scientists hardly ever say anything is definite.
It’s almost always ‘ this may show’, ‘this suggests’, ‘this could imply’…that sort of language.
It’s part of the training.

The NAS’s piece was prompted by politics, not science, imho.

This is the more or less podcast.
https://www.bbc.co.uk/sounds/brand/b006qshd?partner=uk.co.bbc&origin=share-mobile

I really would recommend everyone to listen occasionally, each item is only 9 minutes (the longer episodes cover 3 items). and they do a good job of exploring the "numbers behind the headlines" it really shows how a small line in a paper gets switched to an absolute fact in a headline.

In the communication about research it certainly can give that impression.
And given it is not scientists, as we can see from the thread who do give out statements, it is press officers that do this why it would seem.

The purpose of the research is often not what is broadcast.

This I think would be an imaginary example that would sort of fit

So the development of aspirin came from willow bark.

Paper 1: Antidotal paper by research based Dr (MD), when I give willow patients willow bark their report headaches go away. Very small scale say 5 patients.
Purpose of paper is just to note that there is historical use of willow bark might be correct.

NEWS Report - Willow bark offers significant break through in the treatment of severe and reoccurring headaches currently responsible for £17 trillion in sick days in the UK.
Include interview with a reader who has debilitating headaches and how much their life is affected.

Paper 2: Biologist gives willow bark to brain cells linked with headaches (not a biologist no idea if such a thing exists) and it speeds up their recovery back to normal compared with a control group.

Purpose of paper is to verify the link between willow bark and headaches and to prompt other specialist in natural products to explore willow bark more thoroughly to work out what exactly is in willow bark that is the "active ingredient"

It would also validate that the model of "headaches" does what they think it should

NEWS Report: Break through study shows Willow Bark offers 500% decrease in headache duration, a promising cure in debilitating headaches afflicting 3 in 2 adults
Include reader who has been buying willow bark and how it has completely changed their life.

Paper 3: a natural products specialist identifies all of the different components and find that the salacin in willow bark is the key ingredient.

The purpose of the paper is to provide the structure and for medicinal biologist and chemists to pick it up in pharmaceutical development. How does it help headaches, what else is it doing in the body? Can it be improved on?

NEWS Report: Scientist identify key ingredient in Willow Bark that cures headaches. A record $1 Gazillion deal done with ABC Pharma to take on research. Include reader asking why aren't they prescribing this on the NHS, why is this breakthrough being withheld from patients.
More life changing stories.

Paper 4: salacin is converted in the body to compound B. This is then active again protein and this has been shown to do Y. Y is associated with these symptoms.

Proven efficacy, start of where could you take salicin to make it better than willow bar
NEWS Report: Compound B offers revolutionary change in the treatment of headaches.
Include reader experience of willow bark not working, why can't they have compound B

Paper 5: other activity of salacin - side effects that would be problematic.

NEWS Report: Willow Bark is dangerous Do NOT use.
Include reader stories where they had life changing side effects

Paper 6/Patent 1: Aspirin works in the same way as willow bark but not as harmful on the stomach.

NEWS Report: Promising Phase I/II/III trial in the treatment of headaches.

It takes on average 20-25 years to get from paper 1 to paper 6 and something being actually available for patients to be prescribed but if you only looked at the papers it would look like it should have been done years and years ago. At every step there is massive hyperbole. There is more we don't understand about our bodies than we do understand.