Activism for post-diagnostic autism assessments

I wonder what people think about this - should we campaign for a change in the law to have face-to-face post-diagnostic autism assessments made mandatory and applied retroactively, especially in the cases of autism diagnoses made online via zoom? This would fully, accurately and properly assess levels and types of autism, any Co-occurring conditions and identify any appropriate avenues of support, with a support plan as a legal document given to the person afterwards and copies of same passed to all interested parties, setting out their legal responsibilities to that person. I also believe that we should campaign for a separate body away from the NHS, properly funded, dealing with all aspects of mental health and hidden disability issues on an “in-house” basis, bring in global best practice, bringing in charities and experts, with world class standards of care and support, also exclusively administering financial support for people with hidden disabilities, autism and mental health away from the DWP and jobcentres without endless referrals via GP’s and having experts to provide reports rather than the current outsourcing to private companies that the DWP and other state bodies are currently obsessed with
 
Are you looking for assessments to be in person or for post diagnosis advice?

I don't think I could of attended an face to face assessment in January, my sensory are so overwhelmed I just don't think I would of been able to do it in person

With post diagnosis advice, I was given a list of books and links to websites and I'm trying to get on the county autism program

The fact support is limited to pyscoeducation makes me think that there is no research into what will work and we're expected to work through on our own

The number of people who seem to be in burnout and or out of work is so high and all I hear on the news is we are faking or overdignoise for benefits

I find the whole narrative exhausting
I’ve seen the same thing about “fake diagnosis” and people “faking it” on the media and it’s disgusting, that’s why I believe that the law must be changed to give people the option to have face-to-face post diagnosis assessments and what the person chooses must carry legal weight and authority - the lack of any proper or real research and no proper post diagnosis support on a proper legal footing or basis is a major issue - a guy in Singapore who is autistic himself wrote articles that appeared on Google Search and seems to be not only suggesting that we are faking our diagnoses, but in email exchanges that I’ve had with him seems to be suggesting that we should not even be looking for any post-diagnostic support, even for such a life-changing condition like autism, reflecting similar kinds of views that I’ve seen elsewhere online - for those of us who are diagnosed later in life, it’s even more difficult and frankly, I really took exception to his articles and email responses - professionals working in this area must also take their ethical and moral responsibilities and duty of care far more seriously than what they do and must not be allowed to hide behind the “no funding” excuse as a legal defence for failing to meet same - I’m old enough to remember when the Irish Catholic nuns ran Irish hospitals properly in Ireland and that socially responsible mindset carried over into the U.K. with the Irish girls that had attended Irish convent schools and having been trained as nurses by the Nuns in Irish Catholic teaching hospitals, carried these teachings over into the NHS in the early days - the Irish nuns who were either teaching or nursing sisters saw their roles as more than just a 9-5 job, it was a vocation, their whole life’s work, with an unparalleled level of commitment and dedication that we no longer see today in the present day NHS
 
Not everyone can attend face to face - and the time they take (to travel back and forth and attend), let alone cost - what's your logic for this ?

Autism level vary day to day and are situational so when you assess someone they are making a judgment call based on more than who turns up on the day - you usually have to provide a fair amount of evidence for assessments

the NHS ain't world class - nothing in the UK is world class . The UK is broke - my council tax is over £3.6k a year - to properly fund we'd be even more tax, and as the output of the UK is taking a nosedive all we are doing is building debt for future generations - it's not sustainable. The UK government can't deliver much over recent decades: how long to build a single train line that saves a few minutes between just 2 cities, how long to build 1 new nuclear powerplant. Look at the potholes on the roads : no long term thinking everything done here is a reactive repair - no vision

So I certainly wouldnt support this - I got my diagnoses (AuDHD) privately: I got seen within a month of my call - yes I'm lucky to get these this way, and RTC is giving NDs a chance to get a diagnosis when the NHS is on its knees

Support will never be provided by the Gov
 
What would post diagnosis assessments look like for you, what would you want to see included?
Any post diagnosis assessment must include and consist of an assessment of the level and type of autism as confirmed by the diagnosis report, any Co-occurring conditions and as appropriate, on a case-by-case basis, identifying any sources of appropriate support - these would be the 3 main areas of assessment
 
Not everyone can attend face to face - and the time they take (to travel back and forth and attend), let alone cost - what's your logic for this ?

Autism level vary day to day and are situational so when you assess someone they are making a judgment call based on more than who turns up on the day - you usually have to provide a fair amount of evidence for assessments

the NHS ain't world class - nothing in the UK is world class . The UK is broke - my council tax is over £3.6k a year - to properly fund we'd be even more tax, and as the output of the UK is taking a nosedive all we are doing is building debt for future generations - it's not sustainable. The UK government can't deliver much over recent decades: how long to build a single train line that saves a few minutes between just 2 cities, how long to build 1 new nuclear powerplant. Look at the potholes on the roads : no long term thinking everything done here is a reactive repair - no vision

So I certainly wouldnt support this - I got my diagnoses (AuDHD) privately: I got seen within a month of my call - yes I'm lucky to get these this way, and RTC is giving NDs a chance to get a diagnosis when the NHS is on its knees

Support will never be provided by the Gov
I’ve put many of these points based on my own experiences to Rupert Lowe of Restore Britian and I’ve got a very positive response to date. The reason that the NHS and most public services are so underfunded, even a new body if established, is because of decades long, endemic, systemic establishment corruption and mismanagement that results in other things, lack of funding. This is simply about requiring government bodies by law to start doing their jobs properly and start having a more professional attitude that exists in the private sector.
 
In an ideal world this would be amazing, unfortunately we live in the UK where there is zero funding, zero standardisation and almost zero support for neurodivergent people. At present we're seen as the latest 'trend' to use as a political tool. I waited years for assessment by the NHS. I live in Wales so there are no Right to Choose services. My assessment was face to face. It was two hours long, the psychiatrist didn't ask me to provide any information from family or anyone who knew me. There were no diagnostic tests. After the assessment I was emailed a two page 'report' that was merely basic notes from the assessment with a line at the bottom saying I have autism and adhd. I've never seen a psychiatrist since. I was passed to his secretary whom I had to repeatedly email to ask what happened next. Eventually I was passed to the local mental health pharmeuctical team...who didn't exist as their pharmacist was in maternity..after much complaining I spoke to a pharmacist over the phone who prescribed medication. She posted me out and incorrect prescription...I spent the next 5 months travelling and hour each way to pick up a prescription...that was titration. This isn't a sob story, this is the state of the NHS. Several of my children require assessment but they would have to wait years and actually be adults by the time they were assessed. I have never been offered support. I argued for counselling but there is no neurodiverse counselling in the NHS so it was useless. I'm seen as 'high functioning ' as term I loathe because I struggle. I'm perimenopausal and my GP knows nothing about menopause and less about ND. There's no joined up care. The mental health team told me that 'autism' is fairly new' so they have no resources to help. The psychiatrist secretary sent me some websites. I am a bright person. I have educated myself and I work as an advocate. I see people on a daily basis struggling without support, some diagnosed, some not, most without understanding of what their ND means and how it affects them. No one explains, doctors would rather give out medication, there is no coaching or education through the NHS and no help unless you can pay...which isn't unique to ND. People are losing their jobs, not getting jobs, losing their children, their homes, their sanity. It's a crisis...but no one cares because they're poor and at the bottom of society. There are plenty of fascinating podcasts and papers out there...each one says 'talk to healthcare provider ' 'get therapy' 'see a specialist'...but such unicorns do not exist for most of us.
So yes....a post diagnostic, face to face, report would be great but what would be better is access to assessment, post diagnostic support, coaching, appropriate counselling or in fact anything at all....I'm lucky enough to be diagnosed but even then all I received was ' you're ASD and ADHD, now, off you go'.
 
This is one of many reasons why I support Rupert Lowe and Restore Britain and I have detailed many of these issues in my contacts with them - it’s very clear that Labour, as well as the Tories, are totally corrupt who have been consistently, intentionally and maliciously under-funding the NHS for decades, while at the same time, they have deliberately done nothing to tackle the mismanagement and wastage within the NHS for decades - we must not accept this current situation nor feel forced to do so - all of us need to start getting active in campaigns to change the current status quo and to robustly challenge the politicians on their failures - and as a gay man myself, I know that activism does work - one of the most important lessons that I’ve learned in my 30 years in supermarket retailing is that you don’t allow a problem to fester, you tackle it swiftly, forcefully and immediately and you robustly challenge those responsible for creating the problem, you resolve problems quickly and you don’t accept excuses
 
Restore Britain - never heard of them - I know of 5 parties that even at an outside chance can win a majority Government
 
Restore Britain - never heard of them - I know of 5 parties that even at an outside chance can win a majority Government
It was founded by Rupert Lowe who was thrown out of Reform for being too right wing! I assure you firstly that they won't get into power, and in the unlikely reason that they did, they would do nothing to improve the situation. We are living through a mental health crisis,with a severely underfunded service. Unfortunately that means money is pretty much split (not equally) between acute/ crisis care for the really ill and a set of simple CBT options for the mildly ill. The nuances of neurodiversity do not fit this model and we're still trying to advocate for better more inclusive devices. It's good that ADHD is finally being addressed in parliament, but autism remains very poorly understood, especially in women and it's criminal how few autistics are in work.
 
It was founded by Rupert Lowe who was thrown out of Reform for being too right wing! I assure you firstly that they won't get into power, and in the unlikely reason that they did, they would do nothing to improve the situation. We are living through a mental health crisis,with a severely underfunded service. Unfortunately that means money is pretty much split (not equally) between acute/ crisis care for the really ill and a set of simple CBT options for the mildly ill. The nuances of neurodiversity do not fit this model and we're still trying to advocate for better more inclusive devices. It's good that ADHD is finally being addressed in parliament, but autism remains very poorly understood, especially in women and it's criminal how few autistics are in work.
I’m proudly right wing myself and given the interactions that I’ve had with Rupert and Restore, I have every faith in his ability to get into power and to deliver the results that we need - in fact, I’m a Restore member