The Autism Tribune was surprised to hear Nigel Farage pedal the mainstream view that the crisis in local government funding, largely driven by the cost of provision for Special Educational Needs (SEND), was just about over-diagnosis. A good populist would know the facts in this case. Families, communities and schools are being overwhelmed by an epidemic of autism and related neurological disorders. The crisis is real. If Reform win seats as they hope, they will have to do better than this. Now's the time to get to grip with formulating a proper response.
The entire world is holding its hoping that RFK will lead up out of this nightmare. I don't see any rays of light elsewhere around the globe. President trump said it was an act of God that brought him together with RFK. RFK had been asking to join up with Trump, once K Harris took half of RFKs votes away. After the bullet hit his ear, within an hour he got a call from RFK, and Trump said yes to the offer. In other words, Trump understood the message, to pay attention, be grateful, and to understand that he needed help. Needless to say, I cheered.
Me too - Kennedy gives me great hope that things will change before it is too late for future generations to avoid the kind of neurological harm we now see in our kids.
my heart breaks for the terrible situation over there in the UK. (and for more than just the autism crisis!) sad that even the 'reform' leader buys the bullshit 'better dx' narrative. yes, we have RFK jr as our champion over here in the States but make no mistake, its been a LONG time coming and a mountain yet to climb.
the autism community itself is and has been for years, divided into camps: the 'autism is medical' & the 'neurodiversity' BS. I truely believe that the former is vastly larger than the latter, whose only advantage is big corporate money backing of the so-called charity organizations, like Autism Speaks (who took 'looking for the cause' out of their mission statement like a decade ago).
now we have minor celebrities & online ninnies denouncing Bobby for daring to publicly describe the most severely effected. oh no, one mom cries, he (Bobby) "can't possibly know nor speak for the rest of us! MY son is NOT like the THOSE" (apparent lesser species who their kid should not be lumped in with.) Bobby offends them and their cute stimming kiddos who are just 'different', not disabled. oh really? my message to them is: just wait till the same 'cute' behaviors are being done by your 20 yr old adult son, who could easily break your arm while having a meltdown. THEN you will be crying for help, won't you? or else you will have long since either institutionalized or drugged them into zombies. either way, sit down & shut up cuz you are not relevant to us veterans in the trenches. (a bitchy attitude, yes, but I honestly don't care & would say that to their faces if given a chance.)
I suppose my take is still a bit cynical: yeah it would be nice if the officialdom saw the truth of the situation and supported us appropriately but I won't hold my breath, even with RFK jr on the case. I will not stop advocating for parents to take matters into their own hands as much as possible, support & mentor as many other families as you can and circle the wagons. but never, ever stop making as much noise as you can. take your kids/adults with autism out into the public, make sure people SEE them, make sure our leaders SEE them.
they are not numbers; they don't have fake or exaggerated diagnoses.
THEY ARE HUMAN BEINGS WHOSE LIVES HAVE BEEN ROBBED!
Warrior Mom for prime minister! So powerful and inspiring to read this. Thankyou! I think Reform is our best bet to getting heard in the political sphere so we need to keep trying. This article was also in The Conservative Woman yesterday - and from there it might reach Farage and the team. Will keep reporting back to everyone on the Tribune.
I already follow you on substack and have seen your work - for which, many thanks! It is not easy to make personal contact via substack for some reason but you can email me on janemargaretwills@gmail.com
I would be very happy to support discussions with any political party willing to listen and do something!
I've been sharing your pieces with a few new friends in the UK. neither have 'skin in the game' with autism but are active covid & climate dissidents. I figure there's no reason not to cultivate some activist cross-over. :) all involve the oligarchs poisoning the plebs in one way or another.
If I may I'd like to clarify something that currently seems to be about as clear as mud.
We can, and apparently we do, have two different things happening at the same time.
1. A massive increase in autism - the kind defined by official diagnostic criteria - among children. That, of course, means more people being born who have or will soon have autism. All of these people deserve diagnosis, support, and so much more. As this tide rises, more and more of them are becoming adults with the same disorder they had as children.
2. Massive publicity directed at adults who have full cognitive and language abilities, urging them to take a short quiz to decide whether they, too, are autistic and how to get a diagnosis. This is combined with some famous, fundamentally flawed scientific papers claiming without evidence that there is a massive number of autistic adults who have never been identified, let alone diagnoses. The resulting surge of adults seeking evaluations for autism is overwhelming the NHS system and the pressure greatly increases the chances for false positive diagnoses. That is, "overdiagnosis."
One thing that ties these two together is birth year prevalence. Or, it should, and it would if reporters and scientists were clear and honest about it. False assumptions about constant birth year prevalence drove the fantastical claims about massive numbers of unidentified autistic adults. The growth in clinical autism among children is the same thing as the increase in birth year prevalence.
Hi Alexander Thanks for this. I agree, there are two things going on which is very unhelpful and we definitely need good quality data based on birth year prevalence. This data has just come out for the US and we need the same for the UK (and its constituent parts). The increase in severe or classic autism amongst children should be our top priority. It is devastating. It should be treated as an existential emergency.
However, at the same time, I have been reluctant to condemn the adults who are self-diagnosing or getting diagnosed late in life, even when they are obviously able to function. So many of them do report problems and denying their reality is what people do to me in relation to our son. Who am I to deny them their problems? An inability to relate to people and form positive social relationships is a problem, it just appears minor when compared to people with severe autism. We need to differentiate the two groups - as we used to when describing Asperger's and autism. Does this make sense?
However, tolerance from our community should require reciprocal respect and tolerance. I think we need to challenge back when higher functioning people deny our reality and decry people who are trying to help our children to have less pain and suffering in their lives. It works both ways ...
I think it is just too hard to accept that the massive increases in disabled children is real. It’s easier to believe that it is somehow better diagnosing of something that has always been here or over diagnosing when nothing is really wrong.
The alternative is that something we are doing to kids is causing all this damage. No one wants to go there.
The entire world is holding its hoping that RFK will lead up out of this nightmare. I don't see any rays of light elsewhere around the globe. President trump said it was an act of God that brought him together with RFK. RFK had been asking to join up with Trump, once K Harris took half of RFKs votes away. After the bullet hit his ear, within an hour he got a call from RFK, and Trump said yes to the offer. In other words, Trump understood the message, to pay attention, be grateful, and to understand that he needed help. Needless to say, I cheered.
Me too - Kennedy gives me great hope that things will change before it is too late for future generations to avoid the kind of neurological harm we now see in our kids.
my heart breaks for the terrible situation over there in the UK. (and for more than just the autism crisis!) sad that even the 'reform' leader buys the bullshit 'better dx' narrative. yes, we have RFK jr as our champion over here in the States but make no mistake, its been a LONG time coming and a mountain yet to climb.
the autism community itself is and has been for years, divided into camps: the 'autism is medical' & the 'neurodiversity' BS. I truely believe that the former is vastly larger than the latter, whose only advantage is big corporate money backing of the so-called charity organizations, like Autism Speaks (who took 'looking for the cause' out of their mission statement like a decade ago).
now we have minor celebrities & online ninnies denouncing Bobby for daring to publicly describe the most severely effected. oh no, one mom cries, he (Bobby) "can't possibly know nor speak for the rest of us! MY son is NOT like the THOSE" (apparent lesser species who their kid should not be lumped in with.) Bobby offends them and their cute stimming kiddos who are just 'different', not disabled. oh really? my message to them is: just wait till the same 'cute' behaviors are being done by your 20 yr old adult son, who could easily break your arm while having a meltdown. THEN you will be crying for help, won't you? or else you will have long since either institutionalized or drugged them into zombies. either way, sit down & shut up cuz you are not relevant to us veterans in the trenches. (a bitchy attitude, yes, but I honestly don't care & would say that to their faces if given a chance.)
I suppose my take is still a bit cynical: yeah it would be nice if the officialdom saw the truth of the situation and supported us appropriately but I won't hold my breath, even with RFK jr on the case. I will not stop advocating for parents to take matters into their own hands as much as possible, support & mentor as many other families as you can and circle the wagons. but never, ever stop making as much noise as you can. take your kids/adults with autism out into the public, make sure people SEE them, make sure our leaders SEE them.
they are not numbers; they don't have fake or exaggerated diagnoses.
THEY ARE HUMAN BEINGS WHOSE LIVES HAVE BEEN ROBBED!
Warrior Mom for prime minister! So powerful and inspiring to read this. Thankyou! I think Reform is our best bet to getting heard in the political sphere so we need to keep trying. This article was also in The Conservative Woman yesterday - and from there it might reach Farage and the team. Will keep reporting back to everyone on the Tribune.
Hi Euripides
I already follow you on substack and have seen your work - for which, many thanks! It is not easy to make personal contact via substack for some reason but you can email me on janemargaretwills@gmail.com
I would be very happy to support discussions with any political party willing to listen and do something!
I've been sharing your pieces with a few new friends in the UK. neither have 'skin in the game' with autism but are active covid & climate dissidents. I figure there's no reason not to cultivate some activist cross-over. :) all involve the oligarchs poisoning the plebs in one way or another.
Thank you, Jane. Many excellent points.
If I may I'd like to clarify something that currently seems to be about as clear as mud.
We can, and apparently we do, have two different things happening at the same time.
1. A massive increase in autism - the kind defined by official diagnostic criteria - among children. That, of course, means more people being born who have or will soon have autism. All of these people deserve diagnosis, support, and so much more. As this tide rises, more and more of them are becoming adults with the same disorder they had as children.
2. Massive publicity directed at adults who have full cognitive and language abilities, urging them to take a short quiz to decide whether they, too, are autistic and how to get a diagnosis. This is combined with some famous, fundamentally flawed scientific papers claiming without evidence that there is a massive number of autistic adults who have never been identified, let alone diagnoses. The resulting surge of adults seeking evaluations for autism is overwhelming the NHS system and the pressure greatly increases the chances for false positive diagnoses. That is, "overdiagnosis."
One thing that ties these two together is birth year prevalence. Or, it should, and it would if reporters and scientists were clear and honest about it. False assumptions about constant birth year prevalence drove the fantastical claims about massive numbers of unidentified autistic adults. The growth in clinical autism among children is the same thing as the increase in birth year prevalence.
Hi Alexander Thanks for this. I agree, there are two things going on which is very unhelpful and we definitely need good quality data based on birth year prevalence. This data has just come out for the US and we need the same for the UK (and its constituent parts). The increase in severe or classic autism amongst children should be our top priority. It is devastating. It should be treated as an existential emergency.
However, at the same time, I have been reluctant to condemn the adults who are self-diagnosing or getting diagnosed late in life, even when they are obviously able to function. So many of them do report problems and denying their reality is what people do to me in relation to our son. Who am I to deny them their problems? An inability to relate to people and form positive social relationships is a problem, it just appears minor when compared to people with severe autism. We need to differentiate the two groups - as we used to when describing Asperger's and autism. Does this make sense?
However, tolerance from our community should require reciprocal respect and tolerance. I think we need to challenge back when higher functioning people deny our reality and decry people who are trying to help our children to have less pain and suffering in their lives. It works both ways ...
Yes, of course!
I think it is just too hard to accept that the massive increases in disabled children is real. It’s easier to believe that it is somehow better diagnosing of something that has always been here or over diagnosing when nothing is really wrong.
The alternative is that something we are doing to kids is causing all this damage. No one wants to go there.