Does anybody else feel that over the last ten years or so, neurodiversity has become 'big business' and has lost its focus?
Does anybody else feel that over the last ten years or so, neurodiversity has become 'big business' and has lost its focus?
I wonder if part of the problems with having a private diagnosis that the NHS dosen't want to recognise, is that there seem to be so many cowboys out there?
I agree with you, it is very unfair. The surgery might argue that NICE guidelines are just guidelines. In Northern Ireland, refusal to write NHS prescriptions for ADHD drugs from private referrals is increasingly common and my niece is affected. She is a patient at a surgery miles away from mine.
People who are living with cancer and MS are not able to access some drugs that would prolong their life although I think in these cases the decision was made at a higher level, possibly it was the health trust or the government’s decision.
It should not be the case. The NICE guidelines for adult autism make no mention of how an assessment is funded, the only criteria for a valid diagnosis is the qualifications and specialisms of the clinician or clinicians making the diagnosis.
Could you imagine an NHS trust saying that a private diagnosis of heart disease was invalid? It is sheer nonsense and people should complain.
The psychiatrist should have been able to write a prescription to be filled at the chemist the same as an NHS doctors prescription if my understanding of prescriptions is correct.
If a patient chooses to be assessed privately (ie outside of the NHS system), then - unless their GP is agreeable to entering in a Shared Care Agreement (SCA) with that private provider, which they are not obliged to do - that patient will then also need to pay privately for their ongoing medications.
To avoid this issue, people who are considering seeking a private ADHD diagnosis can first check whether their GP will be willing to enter into an SCA with the provider they're intending to use:
I was born, and have remained, thinking independently of dogma. It makes my life more difficult than it needs to be.....but that's just me.
I had to start the whole process from scratch despite the diagnosis coming from a certified psychiatrist.
Were you prescribed different meds or different strengths of the meds as a result of the re-evaluation?
It may be that the NHS consultant thought you had been oversold the treatment and meds so they wanted to get you onto a programme that they thought was correct.
The meds do seem expensive. The psychiatrist should have been able to write a prescription to be filled at the chemist the same as an NHS doctors prescription if my understanding of prescriptions is correct.
The whole setup smells off to me - more than a little unethical.
To add to the posts recently added. My experience was as follows. After waiting four and a half years on the NHS waiting list for ADHD. In the end, I got a private diagnosis:
Diagnosis = £1600
Monthly appointments = £150 (medication was dependent on your attending the monthly appointment)
Monthly medication = £130
Each monthly appointment consisted of 30 minutes of aggressive sales tactics regarding their services, which ranged from group to electroconvulsive therapy. There were also 5 minutes of chat and then the writing of a prescription. The offer of shared care was raised, and if it hadn't been for my research, it would never have been made.
When I finally got to be assessed by NHS (which had to be done, or they would no longer pay for my medication). I had to start the whole process from scratch despite the diagnosis coming from a certified psychiatrist.
Make of that what you will.
The top is "The medicalisation of normal behaviour" - I will take half a point. 
The second one. I have just brought the book and will report back with my insights.
I do know that incredible amounts of money have been allocated to the Autism/Neurodiversity cause. Yet, minimal ends up being invested into much-needed resources.
I suspect the vast majority ends up in either academic research or the pockets of the companies doing the research - the graph does after all talk about the research funding rather than support funding.
Finding the support level funding would be a different task as it falls under a bunch of areas such as:
Whatever health provider you use (in the USA there are many, most of which you have to pay for).
Charities (often hard to see the true numbers)
Local support organisations (groups setup by local entities to help those in their region)
Potentially other care providers such as veteran support, child support, workplace insurance etc.
Certainly in the USA this is going to be nearly impossible to find to give you meaningful info to work from about support.
In the UK there is the NHS, charities, local groups and private support (psychotherapy, counselling etc) that may be easier to find out about.
B&I, I agree with you, as an older woman I feel forgotten, it seems that when you reach 60 adult services want to push you towards services for the elderly, I'm not that old I'm not even old enough for my pension yet! Services for the elderly don't know about ASC or how prevalent it is or what to do with us. It feel sas though theres as big a gap to fall through between adult and older adult needs as there is at the other end of the scale between children/young people and adult services.
From what I see all the resources are digital, which is no good if you're not techy, can't afford it and don't actually know about it because it's all on a tech platform to begin with.
All I see is a lot of talk and no action.
A lot of the things that are presented to ASC people as somehow revolutionary like the idea of spoons of energy are things I was reading about 30 or 40 years ago in womens magazines, not specialist ones, just normal ones, before they became vehichles for celebrity diets and "it happened to me" stuff. It's the same with places like pain clinics, they treat this stuff like it's all singing and all dancing, its not, nor is it new, where have they been for the last 40 years?
Not sure if this has been discussed already. I wonder if anyone has been able to read it - I don't have a subscription to pass the paywall. If anyone has, would be interested to know what the article says.
Haven't read this either: (please note other book retailers are available)
https://www.amazon.co.uk/Autism-Inc-Industrial-Complex/dp/1975501853
It's an interesting question. I don't think it has lost focus though. Just we are not living in a commercial-free vacuum.
https://www.statista.com/statistics/1237464/autism-research-funding-united-states-by-nih/
It seems that the Americans invest far more in their research than we do in the U.K.
God, no, it is not a jibe. Maybe I haven't explained myself sufficiently. It's my opinion that a large part of the Autistic Community feels under-supported and forgotten in the current circumstances. No, I do not have any peer-reviewed evidence to substantiate my claim, and maybe, again, I misspoken. However, I do know that incredible amounts of money have been allocated to the Autism/Neurodiversity cause. Yet, minimal ends up being invested into much-needed resources. Hence, my original question about the commercialisation of neurodiversity. However, it isn't all about revenue and funding; it's also the introduction of commercial-style documents, policies and procedures finding their way as well.
Hi Number,
Thank you, I try.
You're correct about the quiet acceptance approach, and it INFURIATES me. As a group, we are so much more than that. Unfortunately, things won't change until we learn to think independently of the dogma.
For any body else reading this that disagrees, as always, it is just my opinion.
Cheers
I am sure if you asked if Desmond, about Autism in the 90's and now he would paint a completely different picture. It wasn't so long ago that Autism was the most funded medical research in the world.
Autism was only added to the DSM in the 1980s so by the 1990s it was very much in its infancy and diagnosis rates would be very low due to a lack of knowledge in the medical community about it and the referral process.
It wasn't so long ago that Autism was the most funded medical research in the world.
More so than cancer? I would be surprised if that was the case - do you have any links to back up this claim please?
How is that working out for you?
I'm confused as to what this means in this context? Is it a jibe?
Man, I miss the 90's. Life was so much simpler then. 
Hi Iain,
As Number has alluded to below (which I will answer next). The ongoing research is the 'surge'. Over the last 15 or so years, we have had the Autism Act, the Equality Act, Identity Politics, MeToo, and an explosion in diversity, inclusion, and equality. Essentially the rise of the celebration of difference. Which is in my opinion is great, but I am sure if you asked if Desmond, about Autism in the 90's and now he would paint a completely different picture. It wasn't so long ago that Autism was the most funded medical research in the world.
How is that working out for you?
Mmmmmmmm, you're both on the mark and somewhat off, in my opinion. If it's comorbid, then it's biological. Which is mother nature doing the lumping together. And I was informed quite reliably that adult ADHD did not officially exist until 2008. Which has a Schrodingers Cat vibe about it
what would justify the millions being pumped into to research?
Can you give some links for this spending you refer to please?
I assume it is a sudden surge as opposed to ongoing research categories that have been on the go for decades so a bit of background could help educate us.
