Opinions: Do we believe the NHS is capable of helping autistic people with mental health problems?

I’m autistic, and I’ve been dealing with depression and social anxiety for over a decade, now. My family has been battling the NHS to get the little support I have now. I am wondering how other autistic people are finding the NHS.

My first issue is that there are no autistic professionals accessible to me, which means I’m having to try and educate every professional I encounter on autism. I’ve been struggling to properly understand what autism is, myself, so I haven’t been doing great. I’m thankful to have an Adult Autism Intensive Support Team that operates in my area, because they have now taken up the role of educating NHS professionals on autism, but that means I’m now having to hope these other human beings internalise what is said to them, view me as equal, and treat my problems as equally as serious as a non-autistic person’s problems, which has happened rarely so far, it feels.

My second issue is the interactions with the professionals who do not care that I am autistic. Having a psychiatric doctor laugh when I told him I was autistic, asking me if it was something I had read on the internet. Having an occupational therapist try asking me to separate myself from my autism. Medication being the solution, for the time being, while I waste years of my life terrified of the world around me. I wonder what else there is that I’ve forgotten to mention. I should document the things that make me feel miserable.

If I were a caged animal, I’d have somebody in my corner. Somebody would scream “This is neglect!” Unfortunately, I’m an autistic human, so I don’t really have that. I have a team of NHS employees in my corner, who aren’t willing to bite the hand that feeds them, verbally, of course. Who would be willing to criticise the one that pays them, that gives them what they need to make it to the next day? I’m trapped, because they’re trapped. I’m losing hope. I have no faith in the NHS, or in British society to force our political leaders, those whose jobs it is to serve the people of our nation, to come to the aid of any autistic person.

In short: I have no faith in the NHS’ ability to help autistic people. How about you?

  • It is a thundering disgrace that this is not rolled out nationally, along with the best practice and latest research findings and treatments from around the world, including Austrailia, which the NHS is more than capable of doing - we also have to seriously question and robustly challenge the kind of people who are being placed in positions of leadership in the NHS as some of their decisions over the years have been highly questionable, involving the mismanagement and misuse of public funds 

  • Devil -v- deep !

    fibromyalgia -v- hep c.

    It is good that you and your GP are of a similar mind though.....and great to hear of patient+GP synchronicity......and the funding/means to enable it in your case. 

  • We'll probably all be asked to rate our pain on a 1-10 scale and how will it know if my 10 is the same as yours? I don't think humans do very well at this.

    Will it be translated from one language into half a dozen others that nobody understands, a bit like instructions from IKEA?

    You never know, we might actually end up with something thart listens to us, but I doubt it, it will probably want to talk to all our other devices which will be fun if like me you don't use social media, YouTube or have a smart phone. If it talked to my Kiindle it would probably come away with the impression that I'm obsessed with death as I read a lot of crime fiction.

    I'm having to have a blood test next week to see if I was given infected blood back in the 80's, the symptoms for hep C are very similar to those of fibromyalgia. I'm not that worried about it, but the GP and I both thought it was worth checking.

  • A.I. will eventually replace their diagnostic function, and on the whole I expect it'll be able to out perform the humans

    I can imagine the trouble that AI will have with the Brittish "it hurts a bit" or "I just feel a bit off" input, never mind the challenges with masking autists when trying to perform any sort of mental health work.


  • Oh my god! That’s absolute rubbish. My heart goes out to you.

  • Actually you know, I wonder if a more holistic system wouldn't be better? Mental health issues are seen as being seperate to physical health now and we all know how well thats working....not. I think a holistic system would make more sense as people would be seen as a whole person rather than a collection of parts, its alright being a part when it's something simple like a broken arm, but when its something long term and has impacts beyond getting over the acute phase things seem to fall apart. I dont' think doctors are being taken off cancer care to see people with mental health problems, they're completely different specialisms and a psychiatrist would have no idea how to treat cancer, but the oncologist might be more accomodating of mental health impacts.

    I think one of the biggest problems is getting people out of hospital and either into nursing homes or to their own homes with proper care and equipment. Social care is underfunded, the people like my Dad had were wonderful, kind nad caring eveythiing you would want, but they were dreadfully underpaid and undertrained, they worked as long as it took them to see to their patients needs regardless of whether they were paid for that time. I think the care system needs to brought into the NHS and not left to cash strapped councils. I think a lot of councils could do with being more integrated too, social work, NHS, police, housing etc should be coordinated so as the best outcomes can be achieved for the individual. I think overall it would be cheaper too as there would be less paperwork, it would certainly be easier for the patient to not have to KEEP telling people the same things over and over.

  • Mental health wise I stared with a call to NHS doctors last year when it was all too much to carry on with, they offered me tablets (I refused) and CBT, no thought towards the underlying issues, after that I went private doctor and referral for diagnosis.

    I was in NHS hospital last year myself and recently my daughter had meningitis so was in for a few weeks 

    Observations from both occasions are -

    Most of the staff are excellent and really care. 

    It's a process disaster, most processes don't hand off to eachother, so nurses and doctors don't know what's happening with you, your medication, tests, anything,  unless they've been there to see it. Shift change and you're left explaining why your there to yet another bunch of people, who then battle the same processes for hours only to hand over to another team at the next shift change. We had to chase medication when it was four hours late various times and all sorts, had we not been there to chase them she'd have been left.

    Some wards don't digitise your case details, so they rely l on paper like it's the 70s.

    Wards move patients to clear beds not telling the receiving ward of their full story, my daughter wouldn't have been allowed on the surgical ward she was dumped on had they known she was infectious with shingles and meningitis , so when we told them , she has to  stay in a side room for two weeks and not use toilets or showers. We heard nurses on the phone begging for hours consultants to come, who didn't, patient then died and 15 minutes later they're having to carry on like it didn't happen, poor souls must all have PTSD.

    Due to the lack of communication processes, diagnosis takes way too long. I had textbook symptoms but after a CT they said was precautionary and we're going to send me home , they rushed me to theatre , it was 4 days into my stay and my appendix was in a right state , meaning the op was a nightmare for the surgeon, along with me having a serious infection as result. I was released home in a right state , still with an infection 2 days after the op. 

    No amount of money will fix seriously bad processes and organisational dysfunction. The staff are worked too hard and have to endure too much. It needs a massive shake up from the top.

  • yeah mental health could do with its own seperate service to physical health.

    because there is a huge rise in people being aware of mental disorders now and everyone is going for diagnosis and this is destroying and overburdening the nhs and making it so they cant see to physical health like cancer and accidents... it needs seperation, physical and mental each need their own seperate service because the mental one is growing larger than it ever was now and its overburdening the physical, and maybe  people dont understand that until they are old enough to end up needing it to function but then cant ever be seen to for like... heart disease... or cancer or whatever... because they are overburdened by mental health issues... both needs to be seen to but if you have cancer youd be pretty miffed at having to wait on people who have mental issues that are not actively ending them like the cancer is.

  • We can throw as much money as we like at the NHS and other public bodies (which very often is mismanaged and wasted) but regardless of whether or not the NHS remains as it is and/or is privatised (which Labour seem to be proposing) the whole culture, attitude and mindset of the NHS needs to fundamentally and radically change, especially in relation to mental health, disability and hidden disability issues, perhaps even having a separate public body entirely for dealing with disability and mental health issues and rebranding existing NHS mental health facilities - too often, they cling to myths, misconceptions, outdated ideas and concepts when dealing with mental health and disability issues for fear of abandoning their core values and traditions, which makes them unwilling to embrace newer ways of looking at things and/or latest research - for example, there are outdated ideas in relation to autism such as “people with autism must never be allowed to live alone” or that “the only way to manage autism is via ultra strict discipline” or that “anything that an autistic person says must always be dismissed as nonsense and ignored because that’s just the autism talking” - we already know that the most forward looking research and ideas into autism best practice is coming from Australia so why is this not being implemented as basic in the NHS here in the U.K.? This is something that must be robustly challenged at every level 

  • “Just following orders” is not an excuse for committing crimes against humanity as many *** tried to do after WWII - one day, they will have to be brought to justice for their crimes 

  • To be fair, the demonising and hatred stoked against those of us who declined the mis-presented G/M injections was bloody terrifying and coming at us from all directions, not just a handful of angry people as a few of yrou health workers are... 

    I know two wrongs don't make a right, but those people LED the campaign aginst those who had any other point of view than the official line! It's hard to feel sympathy.. 

    I'm not so far gone, that I celebrate every "vaccine" caused public death, and I'm utterly stoked (very pleased) that the grim predictions that were floating about about pretty much ALL OF YOU DYING as a result of Mrna tech have started to prove fallacious, but I'm not lauding teh peoel who pushed and promoted it and actively suppressed dissenting points of view.

    Nevertheless, this pandemic was defintely handled in a non-sensical way, across the board. 

    I know, becuase I had several roles, with different vantage points and perspectives on the "plandemic of the unvaccinated.."

    1. I was an unusually Informed member of the public when it comes to the practical side of microbiology. Pre-trained, had a coommand of the basics and situation as it was being reported some months before the "bog roll hunger games". G/F and normies at this point telling me to "stop obsessing" as I "prepped" (for want of a better word, perhaps "pre-adapted" would be more accurate VERY early in 2020.

    2. Concerned conspiracy theorist/prepper. Ahead of the bogroll rush, G/F now a hell of a lot more "on-side". We have the "secret weapon" when it comes to corona virus (UV=c ) And if it gets really bad out there I've figured that I can shop for my neighbours and sterilise the packages on the way back, and if I wear my full gear I can uv sterilise myself at the end of my shift. Then finally the government reacts and locks you all in, and that "Pandemic of the unvaccinated" crap starts up. I already KNEW that you can't vaccinate against a coronavirus since I was SIX, I also had confirmation from a freindly microbiologist that my objections to taking the shot were reasonable.

    3. Government worker reeporting directly to the cabinet office and carrying that letter that said I was a special member of the public, with rights that the rest of you had suspended. Not least, the right to work wthout taking a dodgy injection, and use the roads as I needed to. 

    EVERYONE I knew who took the shots got covid anyway. I didn't.  So ergo I didn't give it to anyone. It was the zeitgeist at one point they were going to go door to door and try and force people like me to either be injected of go to a camp!

    Who cares about the staggering level of alienation and psychological damage inflicted on people like me during that time? EH?

    All that societal and in some cases personal abuse, just for taking care of myself and trying to "warn and inform" my family. 

    Next up: Nuclear war. Currently on track for mid July - August, unless the process already underway derails, which I most fervently hope that it does. 

    There'll be clear indications to tell me to make my move as we fall over the edge, and I'm increasingly confident I can "take a trip" at the right time, rather than "shelter in place". (I actually Prepped and Planned since the 80's for that one! - I though Bio-Attack much less likely....) 

    Covid taught me that no-one will come with me, and there's a "nobility" in "facing the music" with ones loved ones, But I've always made it very clear that I inetend to die as a result of either natural causes or my own stupidity (smoking) and NOT at he whim of a politician or because no-one around me except a handful of us ever cared enough to protest aginst nuclear weapons...

    BIG Governement and it's minions are NOT THERE to serve you.

    If covid-19 didn't illuminate that clearly for people, and spark a desire for some limitation of the states power to persecute the individual "for non-compliance" then we are all probably doomed. ("Doomed I tell ye!!") .

    If people don't want to insist  that our public servants, whether public or private, stop seeing us as cash cows and producing units, to be experimented on at whim, and lied to nearly ALL THE TIME in some way or another by unaccounatble officials then, this is what you get.

    A very young "I'm a massive coke-head" prime minister involviing us in an armed conflict with a clearly detrmined and superior foe who has already issued the orders to defeat us quickly using a tiny part of it's huge panoply of forces up to and including, (under certain circumstances) parts of it's nuclear arsenal, which apparenlty our leaders including young Rishi have been informed of via diplomatic channels just so as no "mistake" occurs, but have neglected to run by the british public.

    On the optimistic side we could still get this thing under control, by means of diplomacy and common sense, (and hanging or otherwise reducing, the power of many members of the conservative party) but it's all a bit of a white knuckle ride, right now! 

    If I'd been your glorious leader, weilding utter power over you all, BRICS would have included Britain by now. Britain would be at the cutting edge of sustainable technolgies, recycling and repairing and conserving what you have would be national objectives, with the country placed on a "war footing" to develope self sustaining agriculture and clean manufacturing including energy solutions so we can become a net exporter to the world again. I'd stop the criminal justice system from "fining the poor" and seek alternatives to prison for many sentences. On the other hand, some crimes would earn the perpetrator public humiliation/ retribution, and or a sentance of servitude or reparations. Medicine would become "results" based, where quick cures are preffered to long profitable "treatments". Where cancer victims can access mecidicines similar to the "Brompton Cocktail" designed not only to decrease their pain but also to help them eke out a bit better quality of life. More of you would die at home, nursed by family rather than strangers, so that death is more "real" to everyone, and less like a video game that happens elsewhere in a sterile hospital.environment surrounded by strangers and (if you are lucky) uncomfortable friends and rellies.

    BUT, I bet I'd still mess it up somehow!

    Chiefly because it's too big a job for a single El-Magnifico such as I would be known, and it seems that except for isolated incidents I can't work well enough with others to get the job done either.  

  • You see, now it is all getting circular and out of hand !! - I'm going to bed.  Nite nite all.

  • Sorry....that should say "everything you say - BELOW" due to the change in default order on this NAS forum......that I have still not yet got used to !!

  • Agreed - everything you say above.

  • during Covid, due to the brave work of those whose life’s work is exposing corruption in defence of the truth in all its forms and from multiple places, we clearly see how corrupt our governments around the world truly are 

    Sadly the health workers who were following the official advice at the time and encouraging vaccines are now being demonised and hated on by the anti-vax brigade, just for doing their jobs.

    The corruption seems to be pervading every aspect of society now it seems and there is no longer "good" or "bad", just "I'm right and you are all wrong".

  • I apreciate your kindness there Number, but every single time I engange with the NHS and it's minions, it's aggravating.

    Those poor people you talk about have been riding high on the hog, sneering and looking down their noses at us mere mortals for bloody decades.

    They get six years of learning "teh biggest flow-chart in teh world" followed by life on the "gravy train" with no performance metrics or targets to hit. (exceptr number of pateints per hour.  You have to both kill someone AND GET CAUGHT to actually get the sack... 

    Plainly we need more doctors, but they are just too expensive. 

    Still, A.I. will eventually replace their diagnostic function, and on the whole I expect it'll be able to out perform the humans Simply because it won't forget half it's training or fail to keep up with the latest data. Doctors rarely act like human beings, so the public will hardly notice any difference except for the improved efficiency.

    We will still want to be touched by a human I suspect, but "human interfaces" for the A.I. will be ten a penny by then. 

    The entire class of overly expensive and poorly perfoming doctors and consultants can be replaced by £250 worth of hardware from China (or another brics country, that does the electronics manufacture and design   that we used to do) and a lightly trained assistant...  

  • It will take years, because the entire system is utterly corrupt - during Covid, due to the brave work of those whose life’s work is exposing corruption in defence of the truth in all its forms and from multiple places, we clearly see how corrupt our governments around the world truly are 

  • Since the attitude you get with the NHS is kinda endemic with gov departments now, the best soluiton is to NOT NEED THEIR HELP....

  • We all need to raise it with our MPs and media. 

    It will take years