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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.

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  • 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

    It’s very interesting reading, my view is how the first point of contact happens needs to change. The GP has total autonomy, how you are treated is based on their personal views of autism or ADHD not medical science.

    Maybe regular courses on understanding autism and best practice would help, unfortunately people have their personal views, but these shouldn’t come into the workplace.

    An older GP is likely to have less understanding of autism or ADHD, some refuse to even acknowledge it exists.

    If I went to a GP and told them I had a severe headache, I would expect an answer of “no you haven’t.”  I have several family members who work in the NHS,  one is very high up in adult safeguarding, their views totally invalidate “ all this so called autism and ADHD”.

    i do wonder if some of the private providers are giving value for money, maybe a cap should be introduced on assessments. For them it is purely business, a gap in the market is identified and the expected profit is calculated. These companies seem to appear, diesel emissions, mis-sold finance and so on. Maybe tightening up on qualifications would help give better care. 
    The ombudsman’s report is common sense, the whole service is still too much of a postcode lottery.

    Also whilst I’m ‘standing on my soap box’, the only having ‘Right to Choose’ in England needs to stop, it should cover the whole of the UK.

  • in reply to Roy
    Roy said:
    Also whilst I’m ‘standing on my soap box’, the only having ‘Right to Choose’ in England needs to stop, it should cover the whole of the UK.

    I do agree. In my area, NHS adult ADHD assessments have stopped because there aren’t qualified clinicians. 

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