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?
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
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.
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.