The Autism Tribune has had a letter back from Stephen Kinnock MP that usefully sets out the UK government position on autism. They aren't too worried about the rising numbers. They are leaving the science to the National Institute for Health and Care Excellence (NICE) - and the current guidelines are woefully out-of-date. The policy for schools is more of the same. We clearly need some new thinking, fast!
I, for one, am grateful that "We can’t give up speaking out and writing letters " even though I have no close family members who suffer. I am aware of the problem in the wider community and am appalled at the lack of willingness of NICE etc to investigate deeper. Maybe NICE is fearful of what it will discover.
An excellent post Jane. Responses from government ministers (or more accurately their administrators) are rarely satisfactory, reiterating what’s already known while avoiding the concerns being raised. I completely agree that NICE is the problem because the guidelines dictate everything from diagnosis to treatment and remove clinical judgment and autonomy in decision making. Woe betide any clinician who deviates from the guidelines, even if it is in the patient’s best interests and woe betide patients who choose to decline NICE recommended treatment plans as I’ve found out to my peril. NICE undermines all the principles of informed consent which is a matter of huge concern.
Thanks Valerie. I obviously agree. The guidelines are a matter of serious concern. Many doctors must know they are wrongly being held back from supporting their patients as best they can. We need to galvanise doctors, researchers and experts who have the noddle to see what is happening. It can't carry on forever.
Ah, the hidden hordes hypothesis redux. There's nothing to see here, folks, because autism has always been this way and there are massive numbers of people with autism that we somehow missed before.
But, of course, that relies on the completely unsupported assumption that autism birth year prevalence has always been the same for all birth years. The papers that claims huge numbers of undiagnosed adults rely completely on that magical assumption without even saying so.
Exactly! It seems such a bizarre thing to be doing ... searching for older people who are managing while neglecting the younger people who are in a very bad way. It is ideologically-driven insanity.
What happens: parents have a child with severe difficulties which needs help. After a few years of the school blaming the child for the problems the dinner ladies report their diagnosis of ASD. A few years on after the medical bureaucracy have ground slowly through many forms the consultant diagnoses ASD. The parents privately say: "We don't think he has ASD, but he definitely needs help." After that many many people earn a living filling in many many forms about the child which are never looked at again. But no one ever addresses his difficulties. The diagnosis and the forms are the end point.
I have been amazed at the form filling too. It is the key to everything but each agency requires new ones and the EHCP is a mini-book that gets updated each year. There is no simplification or online system - and it must be possible to save millions if govt sorted this (as they have done for the online Universal Credit system where you can also communicate via a 'journal' system). The forms are the gateway to diagnosis, education support, special schools, direct payments, social care needs and carer agencies and of course, benefits - UC, PIP, blue badge ... I wrote an earlier post on the remarkable number of state agencies and volume of bureaucracy ... for just one person too!
I, for one, am grateful that "We can’t give up speaking out and writing letters " even though I have no close family members who suffer. I am aware of the problem in the wider community and am appalled at the lack of willingness of NICE etc to investigate deeper. Maybe NICE is fearful of what it will discover.
An excellent post Jane. Responses from government ministers (or more accurately their administrators) are rarely satisfactory, reiterating what’s already known while avoiding the concerns being raised. I completely agree that NICE is the problem because the guidelines dictate everything from diagnosis to treatment and remove clinical judgment and autonomy in decision making. Woe betide any clinician who deviates from the guidelines, even if it is in the patient’s best interests and woe betide patients who choose to decline NICE recommended treatment plans as I’ve found out to my peril. NICE undermines all the principles of informed consent which is a matter of huge concern.
Thanks Valerie. I obviously agree. The guidelines are a matter of serious concern. Many doctors must know they are wrongly being held back from supporting their patients as best they can. We need to galvanise doctors, researchers and experts who have the noddle to see what is happening. It can't carry on forever.
Ah, the hidden hordes hypothesis redux. There's nothing to see here, folks, because autism has always been this way and there are massive numbers of people with autism that we somehow missed before.
But, of course, that relies on the completely unsupported assumption that autism birth year prevalence has always been the same for all birth years. The papers that claims huge numbers of undiagnosed adults rely completely on that magical assumption without even saying so.
Exactly! It seems such a bizarre thing to be doing ... searching for older people who are managing while neglecting the younger people who are in a very bad way. It is ideologically-driven insanity.
What happens: parents have a child with severe difficulties which needs help. After a few years of the school blaming the child for the problems the dinner ladies report their diagnosis of ASD. A few years on after the medical bureaucracy have ground slowly through many forms the consultant diagnoses ASD. The parents privately say: "We don't think he has ASD, but he definitely needs help." After that many many people earn a living filling in many many forms about the child which are never looked at again. But no one ever addresses his difficulties. The diagnosis and the forms are the end point.
I have been amazed at the form filling too. It is the key to everything but each agency requires new ones and the EHCP is a mini-book that gets updated each year. There is no simplification or online system - and it must be possible to save millions if govt sorted this (as they have done for the online Universal Credit system where you can also communicate via a 'journal' system). The forms are the gateway to diagnosis, education support, special schools, direct payments, social care needs and carer agencies and of course, benefits - UC, PIP, blue badge ... I wrote an earlier post on the remarkable number of state agencies and volume of bureaucracy ... for just one person too!