Published on 12, July, 2020
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?
Here is the thing it is luck of the draw.I have had amazing support from the NHS but it is because I know how to navigate it.My GP was convinced I had autism as I was suffering with severe anxiety and some other issues and I said is there something that categorises all my symptoms and then she said yes Autism.
The normal NHS waiting channel is a 6 year wait so I found out you can do right to choose and I found an organisation that would asses me within 6 months.It actually was 3 months.
So my advice keep battling say that you want an assessment and ask for the right to chose
Near duplicate response.
This is the exact same response as my son got, except in Cornwall he isn’t classed as autistic enough for support from the autism team but to autistic for the adult mental health team to support. He has been left in no mans land without any support at all.
No. Normals can't experience our life. So how can they know anything
I come from the opposite side of things. First saw a psychiatrist in autumn 1973, didn't get the Asperger's dx till May 2019. Like a lot of people getting a mental illness diagnosis long before an autism diagnosis - I was not treated well by mental health services.
Things are better now,i.e no heated exchange of words with the mental health, only because my daughter demolished lies that had been allowed to become entrenched about me by my previous mental health team in Essex. My mental health team here in the SW of England are comparatively more knowledgable about autism, but I still got a puzzled look on mentioning 'adaptive functioning' at my post diagnosis appointment. I have had a lifetime of adaptive functioning ability that's way below my intelligence level, without a smidgen of help and support for it.
Urban Wandering Photographer said:neurodiverse individuals
Just FYI:
As a parent I found as soon as my son turned 18 and went from camhs to adult mental health the support just wasn’t there. We had to go private for his counselling and on the nhs it is not available if you have asd. This is ridiculous. Appointments are every 6 months . No support wot so ever. Something does need to be done but nothing ever is.
So why don't we form a working comittee and design our own paradise?
With any accomplishment first you need to frame your intent and start to build a pathway to success...
I worked briefly in an "autists paradise" at one time, where I only needed 3 days off in 8 months, but I didn't know at the time I had Autism or ADD. So I know it's possible to get close to an autists paradise.
I liked 1. being paid enough so that I could get there in good order and do the job. 2. I liked being left alone to work unmolested for a while after I got in so as I could get "myself going" 3. then I liked to work pretty furiously until lunchtime. 4. We ate like kings, in as much as me and my boss (who was about 18 years younger than me!) woudl go to tesco's deli (quite good in Aylesbury, let me tell you) and retrun with a load of nice stuff for anyone else who wanted to partake to share with us. rolls and cheese and pickles & salad etc. 5. On demand free coffee. (I started my days some days with two double espressos in the same cup I called it the "super speedy head raper") Everyone was polite and althoug a little back-bitey as workpaces often are, the real trouble stirring types were quickly identified and suitably "contained". After the takeover they were all promoted of course.
They don't have a clue about autism.
I don't want to be put on pills because the cause of my depression is that society does not understand autism, does not accommodate and is not designed by nor for neurodiverse individuals.
Absolutely!...not
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.
I Sperg said: 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.
Nightmare!
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