BBC In Depth: the ongoing battle to define autism

https://www.bbc.co.uk/news/articles/cdew81wd2y8o

Warning: unsettling especially for those late diagnosed.

Parents
  • What if... there turned out to be more autistics than NT's? Yippee!!!!!!!

  • That thought has crossed my mind several times, too! But looking at the numbers, it presents a really fascinating 'what if.'
    Right now, the best educated guess for formal autism prevalence sits between 1% and 3%, while the broader umbrella of invisible neurominorities is estimated at 15% to 20% of the global population. So even if everyone unmasked, we wouldn't outnumber neurotypicals.
    However, we don't actually need to be the majority to change society. According to a landmark study in Science by Dr Damon Centola, a minority group just needs to reach a 25% tipping point to create a dramatic shift where the majority rapidly adopts new social norms.
    Since neurodivergence sits just under that mark at 15–20%, the most practical way to bridge the gap to 25% is through neurotypical allies. The more people who feel safe enough to be diagnosed and live openly, the more we demonstrate our shared humanity—and the closer we get to pushing that tipping point over the line.
    Of course, to get there, people actually need access to timely identification. I deeply hope that current systemic pressures and funding cuts to assessment pathways are short-lived. Restricting the pathway to a diagnosis doesn't make neurodivergence disappear; it just forces it back into hiding, keeping our community away from that vital 25% threshold.
  • Reflecting on what I wrote above  , I realise looking at macro population statistics can sound a bit academic and detached when the ground-level reality is so brutal right now.
    Talking about reaching a 25% tipping point doesn't change the fact that people are currently stuck on five or six-year NHS waiting lists just trying to get the validation they need. That's why the point about AI tools speeding up assessments by removing administrative backlogs is so vital. We can't build visibility or allyship if the systemic gatekeeping keeps slamming the door on people before they even get to the start line.
  • I'm putting this post here so as I can answer Peter and Phased.

    Sorry the maths stuff went right over my head, I'm not entirely sure what an integer is.

    In your vision of AI diagnosing autism, I'm guessing you mean it doing it via some sort of zoom meeting?

    What if one dosen't have the tech to do this?

    What if one's tech skills are to poor to use it?

    What if you're totally paranoid about having your photo taken and avoid looking at cameras? Even if you were sat in front of one, but kept your head down and didn't look at it, I know people do this to humans too, but with autism and eye contact, I imagine this could be another difficulty.

    At our GP's they have a system where you register your arrival on a screen and another screen call you when the doctors ready to see you. The screen keeps crashing, screens are often poor at registering finger taps when one wears gloves or has dry skin, the most hilarious bit is listening to the screen try and pronounce peoples names, its a good job they put them in writing too or nobody would understand a thing! It's not just traditional Welsh names it has problems with, but many normal English one too. I tries to pronounce every letter, so names like "John", "Hugh", "Anne" and "Jane" it really struggles with, let alone names like Lloyd or Dafydd, it stutters. If tech thats being rolled out now can't cope with these simple things, how will it cope with more complex things, I do realised that speech is more complicated for a machine than it sounds. But, how will it cope with dialects? Or would it all be done via keyboard or touch screen, how will it cope with visual impairment?

    I don't have to imagine something because others already have? Hmmm, would these be the same people who make "intuitive" things like phones? Because they seem anything but intuitive, in the case of phones they maybe intuitive if you've had every model since the first, but if you come in at the middle, it feels like being handed an instrument you've never played before and made to sit in the middle of an orchestra in full swing and told you'll pick it up fine because it's intuitive.

    I'm not sure I trust other peoples imaginations.

    I think my biggest fear with things like this is "computer says no", we've all had experiences of this sort of insanity and I fear it will only get worse, with fewer overrides from humans, that the AI will go rogue and stop the humans disagreeing wth it.

    I'm playing devils advocat here, because I don't understand tech, but I'm on the recieving end of a lot of unintended consequenses from it and probably some of those are from the imaginations of techie people building THEIR ideal world. 

    I'm also wary of tech being shoved at autistic people and other with leaning difficulties etc, it can be a great help, but what messages is it sending out? Ones that you're too complicated for humans, that you're not a "proper" human and "they", NT's don't want to have anyting to do with you,so you become more isolated and alone and still wondering why you feel lonely and would like others to talk too, to cuddle, to have a relationship and children with? 

Reply
  • I'm putting this post here so as I can answer Peter and Phased.

    Sorry the maths stuff went right over my head, I'm not entirely sure what an integer is.

    In your vision of AI diagnosing autism, I'm guessing you mean it doing it via some sort of zoom meeting?

    What if one dosen't have the tech to do this?

    What if one's tech skills are to poor to use it?

    What if you're totally paranoid about having your photo taken and avoid looking at cameras? Even if you were sat in front of one, but kept your head down and didn't look at it, I know people do this to humans too, but with autism and eye contact, I imagine this could be another difficulty.

    At our GP's they have a system where you register your arrival on a screen and another screen call you when the doctors ready to see you. The screen keeps crashing, screens are often poor at registering finger taps when one wears gloves or has dry skin, the most hilarious bit is listening to the screen try and pronounce peoples names, its a good job they put them in writing too or nobody would understand a thing! It's not just traditional Welsh names it has problems with, but many normal English one too. I tries to pronounce every letter, so names like "John", "Hugh", "Anne" and "Jane" it really struggles with, let alone names like Lloyd or Dafydd, it stutters. If tech thats being rolled out now can't cope with these simple things, how will it cope with more complex things, I do realised that speech is more complicated for a machine than it sounds. But, how will it cope with dialects? Or would it all be done via keyboard or touch screen, how will it cope with visual impairment?

    I don't have to imagine something because others already have? Hmmm, would these be the same people who make "intuitive" things like phones? Because they seem anything but intuitive, in the case of phones they maybe intuitive if you've had every model since the first, but if you come in at the middle, it feels like being handed an instrument you've never played before and made to sit in the middle of an orchestra in full swing and told you'll pick it up fine because it's intuitive.

    I'm not sure I trust other peoples imaginations.

    I think my biggest fear with things like this is "computer says no", we've all had experiences of this sort of insanity and I fear it will only get worse, with fewer overrides from humans, that the AI will go rogue and stop the humans disagreeing wth it.

    I'm playing devils advocat here, because I don't understand tech, but I'm on the recieving end of a lot of unintended consequenses from it and probably some of those are from the imaginations of techie people building THEIR ideal world. 

    I'm also wary of tech being shoved at autistic people and other with leaning difficulties etc, it can be a great help, but what messages is it sending out? Ones that you're too complicated for humans, that you're not a "proper" human and "they", NT's don't want to have anyting to do with you,so you become more isolated and alone and still wondering why you feel lonely and would like others to talk too, to cuddle, to have a relationship and children with? 

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