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BBC In Depth: the ongoing battle to define autism

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

Warning: unsettling especially for those late diagnosed.

Parents
  • Hi everyone,
    (Just a quick heads-up: I used an AI tool to help me structure and clean up my thoughts for this post, but the ideas, worries, and findings are entirely my own personal perspective.)
    I’ve been following our discussion here since the Uta Frith article dropped, and I’ve been trying to make sense of why the media seems so focused on this right now. It felt like a bit of a puzzle to me, especially seeing how much traction those comments got.
    When I saw the BBC publish today's article ("NHS bosses warn of chaos in ADHD and autism care"), a few pieces of the puzzle started coming together for me. Reading them back-to-back, alongside all the recent frustration over the Channel 4 programme, I’m starting to feel like we are seeing a broader shift in how our community is being framed in the mainstream media.
    The way I see it, the first article worried me because it focused so heavily on the idea that the spectrum is "too broad." Now, this new piece immediately follows it up by focusing on "spiralling costs" and administrative chaos. With a government-commissioned independent review on neurodivergence due out soon, I can’t help but worry that these stories are subtly conditioning the public to accept future funding cuts or tighter diagnostic criteria. It feels like the narrative is shifting to blame "too much demand" from patients, rather than addressing the years of structural underfunding we’ve all been dealing with.
    But looking into this further gave me some reassurance, and I wanted to share it with the thread. I found the recent report from the Parliamentary and Health Service Ombudsman, and it completely validated what many of us have been saying. Their investigation actually found a 207% surge in complaints driven by broken local NHS systems, fragmented care, and local boards illegally blocking people from using their Right to Choose pathway.
    Seeing that official watchdog report made me realize that the data is on our side. The crisis isn't because too many of us are seeking answers; it’s because the system itself is failing to support us properly. I just wanted to share this perspective because finding that Ombudsman report really helped me counter the anxiety these recent headlines have been causing.
    Anyone else has been feeling the same way about the news this week?
    The links for anyone wanting to read them are here:
  • in reply to Phased

    The NHS isn’t fit for purpose anymore as clinical specialities in autism and ADHD, as well as in other areas such as maternity, have been cut. If RTC is so unregulated as is reported with assessments varying in standard and cost, maybe it would make more economic sense to train up more NHS specialists in psychiatry, psychology, speech therapy etc. I must be missing something because if it was that simple, no department would have a shortage of specialists. 

    I’m wondering if now would be the right time to launch a big campaign for autism diagnostic and support services. Maybe pester Andy Burnham. BBC Newsnight has been featuring different campaigns on an ongoing basis, e.g.  Epstein victims, Military Veterans affected by Nuclear Testing. Some of us have already written to MPs, but in an attempt to exert more pressure, a campaign needs a higher profile with visible accounts on TV and social media by the people affected. An issue is, who can speak for us in such a visible way? 

Reply
  • in reply to Phased

    The NHS isn’t fit for purpose anymore as clinical specialities in autism and ADHD, as well as in other areas such as maternity, have been cut. If RTC is so unregulated as is reported with assessments varying in standard and cost, maybe it would make more economic sense to train up more NHS specialists in psychiatry, psychology, speech therapy etc. I must be missing something because if it was that simple, no department would have a shortage of specialists. 

    I’m wondering if now would be the right time to launch a big campaign for autism diagnostic and support services. Maybe pester Andy Burnham. BBC Newsnight has been featuring different campaigns on an ongoing basis, e.g.  Epstein victims, Military Veterans affected by Nuclear Testing. Some of us have already written to MPs, but in an attempt to exert more pressure, a campaign needs a higher profile with visible accounts on TV and social media by the people affected. An issue is, who can speak for us in such a visible way? 

Children
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