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BBC In Depth: the ongoing battle to define autism

B

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!!!!!!!

  • in reply to Marianne72
    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.
  • in reply to Phased
    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.
  • in reply to TheCatWoman
    Hi @TheCatWoman
    That is an important clarification, and your parents' experience with the credit card check is a perfect example of the real issue. It isn’t the technology itself that is the threat; it is the human gatekeepers who use rigid "computer says no" parameters as an absolute shield to override common sense, nuance, and individual reality. It is a modern form of automated buck-passing that leaves people completely stranded by a system that refuses to take responsibility.
    To answer your question directly about what I propose for those who cannot use digital services: I think this is exactly where the legal framework of the Equality Act becomes a vital, analog tool. Under the law, a service provider—whether it is a local council, an NHS board, or a utility company—is legally required to provide Reasonable Adjustments to prevent discrimination. If a person cannot access a digital-only pathway due to age, disability, or processing barriers, the system is legally obligated to provide a functional, non-digital alternative, such as a direct phone line, a paper-based format, or a designated face-to-face advocate.
    I think that when the digital parameters are used to illegally lock people out, our only real recourse is to use independent, statutory advocacy services to force the machine to bend. Organizations like POhWER, local Citizens Advice bureaus, or independent autism advocates function as the necessary legal crowbars to break through that automated "computer says no" wall. They step into the gap to speak the system's administrative language on our behalf, ensuring that those who cannot or choose not to use digital services are not quietly erased by an indifferent bureaucracy.
    The way I see it is that by swapping these specific notes on where to find independent advocates and how to formally request non-digital adjustments, we are actively building that practical bridge to our rights. It ensures that the digital "fire" remains a tool we control for our own preparation, rather than an automated barrier used by the system to shut us out.
    (oh and I only hope that those organisations I mentioned don't go fully digital themselves!)
    Best wishes,
    Phased
  • in reply to Phased

    Don't get me wrong I'm not anti tech, and the problems I see with it's increased use are because of the tech itself but the humans who control it and set the parameters for how it will be used. It's those I distrust and as we've not sorted enough of the things that "computer says no" too. The computer seems all powerful and nobody has the power to gainsay it, even when they know its wrong, like when my parents tried to get a credit card with a £500 limit, just for use online, hte computer said no as they had no credit hstory, having paid off thier mortgage and having no outstanding loans. The woman doing the checks said it was crazy as she could seen they had plenty of money to cover a £500 limit, but there was nothing she could do.

    What do you propose for those who can't use digital services?

Reply
  • in reply to Phased

    Don't get me wrong I'm not anti tech, and the problems I see with it's increased use are because of the tech itself but the humans who control it and set the parameters for how it will be used. It's those I distrust and as we've not sorted enough of the things that "computer says no" too. The computer seems all powerful and nobody has the power to gainsay it, even when they know its wrong, like when my parents tried to get a credit card with a £500 limit, just for use online, hte computer said no as they had no credit hstory, having paid off thier mortgage and having no outstanding loans. The woman doing the checks said it was crazy as she could seen they had plenty of money to cover a £500 limit, but there was nothing she could do.

    What do you propose for those who can't use digital services?

Children
  • in reply to TheCatWoman
    Hi @TheCatWoman
    That is an important clarification, and your parents' experience with the credit card check is a perfect example of the real issue. It isn’t the technology itself that is the threat; it is the human gatekeepers who use rigid "computer says no" parameters as an absolute shield to override common sense, nuance, and individual reality. It is a modern form of automated buck-passing that leaves people completely stranded by a system that refuses to take responsibility.
    To answer your question directly about what I propose for those who cannot use digital services: I think this is exactly where the legal framework of the Equality Act becomes a vital, analog tool. Under the law, a service provider—whether it is a local council, an NHS board, or a utility company—is legally required to provide Reasonable Adjustments to prevent discrimination. If a person cannot access a digital-only pathway due to age, disability, or processing barriers, the system is legally obligated to provide a functional, non-digital alternative, such as a direct phone line, a paper-based format, or a designated face-to-face advocate.
    I think that when the digital parameters are used to illegally lock people out, our only real recourse is to use independent, statutory advocacy services to force the machine to bend. Organizations like POhWER, local Citizens Advice bureaus, or independent autism advocates function as the necessary legal crowbars to break through that automated "computer says no" wall. They step into the gap to speak the system's administrative language on our behalf, ensuring that those who cannot or choose not to use digital services are not quietly erased by an indifferent bureaucracy.
    The way I see it is that by swapping these specific notes on where to find independent advocates and how to formally request non-digital adjustments, we are actively building that practical bridge to our rights. It ensures that the digital "fire" remains a tool we control for our own preparation, rather than an automated barrier used by the system to shut us out.
    (oh and I only hope that those organisations I mentioned don't go fully digital themselves!)
    Best wishes,
    Phased