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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
    I am really glad to hear that the equality framework maps onto your situation as a useful tool. Having that option in reserve is a vital piece of personal infrastructure.
    Your critique of the modern Citizens Advice triage bottleneck is on the money for what the world is like, and it exposes exactly the kind of automated "computer says no" gatekeeping we were just analysing. When an advocacy system forces a person in a crisis to fill out a digital form, waits six weeks to judge whether they are worthy of help, and restricts themselves purely to one silo, they stop being an independent resource and effectively become an arm of the state administration. It is a classic bureaucratic filter designed to exhaust our remaining baseline energy before we even get to speak to a human being.
    I think your mention of the local Centre for the Unemployed is a really positive example of a counter-weight. Sometimes one needs to keep going until the right lever is found. Sounds like that place was run by at least some people who understand raw survival on the ground, rather than rigid corporate parameters. Swapping these specific notes on where to find these independent, face-to-face advocates and to keep looking around to find them is exactly how we build a practical bridge to our statutory rights when the mainstream channels are broken.
    It seems my joke about hoping these groups don't go fully digital was a bit late for your local area! Thank you for adding this angle; it gives the quiet observers a concrete alternative to look for when the standard systems shut the gate.
    Best wishes,
    Phased
  • in reply to Phased

    I would never have thought of using equality legislation like this. It's a good idea, though and I will use it if I need too. We're lucky that we have a centre ofr the unemployed here that does a lot of advocacy work. I've become very sceptical about CAB though, they seem more an arm of the state than an independent organisation helping ordinary people. Our's has a "triage" system where they assess your problem, that you told them about in a short message or email form and then reach a desicion about whether they're going to help you, which in itself takes about 6 weeks, then you have to wait for an appointment. They only do benefits work now too.

  • 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?

  • in reply to TheCatWoman
    Hi @TheCatWoman
    I completely understand your caution, and your fear of being left behind by an automated world that replaces human care with cold screens is entirely valid. The narrative that all autistics are tech geniuses is a harmful stereotype that leaves far too many people feeling isolated and locked out of basic services.
    I think I need to clarify that for me, using these tools isn't about letting technology replace people or become the answer to everything. I have a narrative to share that helps explain how I view it:
    Someone once said, "I'm not holding with that fire stuff, I'm happier with raw food." A little later, the wolves came for their share of the meal. Because of the fire, they stayed far enough away to be fed with titbits on the edge of the camp and stopped rushing in and taking everything. Eventually, the wolves and the humans started working together for what they both wanted. At least, I hope I got that right; my memory isn't what it used to be!
    I think that for me, treating this tool as "fire" is simply a way to protect my camp. When my nervous system is completely bankrupt from burnout and I am preparing these posts, I use the fire to help me structure, clean up, and test my thoughts so the systemic wolves don't rush in and consume what remains of my baseline before I can even hit submit. It is a practical boundary tool for preparation, not a replacement for human connection. Swapping our thoughts—whether written by hand, spoken aloud, or polished by fire— how I find it, personally, are all ways to keep our shared circle safe.
    Best wishes,
    Phased
Reply
  • in reply to TheCatWoman
    Hi @TheCatWoman
    I completely understand your caution, and your fear of being left behind by an automated world that replaces human care with cold screens is entirely valid. The narrative that all autistics are tech geniuses is a harmful stereotype that leaves far too many people feeling isolated and locked out of basic services.
    I think I need to clarify that for me, using these tools isn't about letting technology replace people or become the answer to everything. I have a narrative to share that helps explain how I view it:
    Someone once said, "I'm not holding with that fire stuff, I'm happier with raw food." A little later, the wolves came for their share of the meal. Because of the fire, they stayed far enough away to be fed with titbits on the edge of the camp and stopped rushing in and taking everything. Eventually, the wolves and the humans started working together for what they both wanted. At least, I hope I got that right; my memory isn't what it used to be!
    I think that for me, treating this tool as "fire" is simply a way to protect my camp. When my nervous system is completely bankrupt from burnout and I am preparing these posts, I use the fire to help me structure, clean up, and test my thoughts so the systemic wolves don't rush in and consume what remains of my baseline before I can even hit submit. It is a practical boundary tool for preparation, not a replacement for human connection. Swapping our thoughts—whether written by hand, spoken aloud, or polished by fire— how I find it, personally, are all ways to keep our shared circle safe.
    Best wishes,
    Phased
Children
  • in reply to TheCatWoman
    Hi @TheCatWoman
    I am really glad to hear that the equality framework maps onto your situation as a useful tool. Having that option in reserve is a vital piece of personal infrastructure.
    Your critique of the modern Citizens Advice triage bottleneck is on the money for what the world is like, and it exposes exactly the kind of automated "computer says no" gatekeeping we were just analysing. When an advocacy system forces a person in a crisis to fill out a digital form, waits six weeks to judge whether they are worthy of help, and restricts themselves purely to one silo, they stop being an independent resource and effectively become an arm of the state administration. It is a classic bureaucratic filter designed to exhaust our remaining baseline energy before we even get to speak to a human being.
    I think your mention of the local Centre for the Unemployed is a really positive example of a counter-weight. Sometimes one needs to keep going until the right lever is found. Sounds like that place was run by at least some people who understand raw survival on the ground, rather than rigid corporate parameters. Swapping these specific notes on where to find these independent, face-to-face advocates and to keep looking around to find them is exactly how we build a practical bridge to our statutory rights when the mainstream channels are broken.
    It seems my joke about hoping these groups don't go fully digital was a bit late for your local area! Thank you for adding this angle; it gives the quiet observers a concrete alternative to look for when the standard systems shut the gate.
    Best wishes,
    Phased
  • in reply to Phased

    I would never have thought of using equality legislation like this. It's a good idea, though and I will use it if I need too. We're lucky that we have a centre ofr the unemployed here that does a lot of advocacy work. I've become very sceptical about CAB though, they seem more an arm of the state than an independent organisation helping ordinary people. Our's has a "triage" system where they assess your problem, that you told them about in a short message or email form and then reach a desicion about whether they're going to help you, which in itself takes about 6 weeks, then you have to wait for an appointment. They only do benefits work now too.

  • 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?