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?
I don't think the NHS does mental health care very well for anybody, it's understanding is based on a basic drug model of take 1, 3 times a day for 7 days, or a broken leg, imobalise in a cast for 6 weeks. I've seen counselling offered as 6, 45 minute sessions, most counselling clients have only just started to trust the counsellor enough to start opening up after 6 weeks, how do you deal with years of abusive childhood in 6, 45 minute sessions? The NHS dosen't like that many theraputic interventions will take months or years to resolve, some clients will need time, sometimes a few months to go away and process whats comes up in therapy and create changes in their lives and then come back and do some more. The NHS dosent' look at the cost benefit analysis properly, it see's a lot of therapy happening and not a lot of "getting better", often there's no "getting better" like you would from an infection or a broken leg.
Mind you I think however bad it is now it's better than when I started counselling when one of the major worries was that a client might have an emergency, try and commit suicide or something and doctors would shift the blame with families onto us because we wern't "proper" professionals but interfearing amatuers thinking that mearly talking about things could do any good. I remember the days when people who had serious mental health problem or learning difficulties, such as Downs were routinely sterilised and many were insititionalised. I think Thatcher's reforms went to far the other way and what we see now are to many "victims of care in the community", people who really can't cope, who are abandoned.
I think mental health services are fragmented, people don't see enough people to get any sort of multidisciplinary approach, there seems to be a disconnect between psychiatric services and comunity ones. They're all over stretched and under resoursed. I'm lucky that I managed to get mostly free or subsidised private counselling and therapy, but much of that has dispeared due to austerity cuts.
I do think that the NHS is management heavy, there are probably whole layers of managers who could be removed. My friend who worked as a dementia specialist nurse, said one of the problems is that once you get to a certain level, you either have to stay there or to be promoted means giving up patient care and becoming a manager. There's no training for nurses going into management, many don't really want to be managers, they want to look after patients.
In general I think that when you get refered to a specialist and they can't help or they think your problem comes under another specialism, you shouldn't have to go back to your GP and get refered all over again and wait another 6 months or a year.
This team is currently supporting me.
It’s not surprising to hear that your experience has been similar. I wonder what would need to be done by us for us to be able to receive adequate support.
i dont believe the NHS is capable of dealing with ANY problem at all.i went in with a dog bite.... i kid you not, they sat me down and opened up their web browser and googled how to treat a dog bite.... no seriously, i already know how it supposed to be treated myself as its common sense, its bare basic knowledge... they had to google it... and ofcourse found they had to clean the wound and give me a tetanus jab, which i already knew, i went in for the purpose of getting a tetanus jab for it, but they didnt know anything and had to google it and thats just bare basic knowledge youd know as a child before your even educated and they didnt know and had to google.... your doctors are as good as google search now, and we used to mock people using google search to diagnose problems, and yet our doctors are now reliant on google search for the most basic of things that they honestly should know.i have no faith in the nhs at all... im actually afraid of how bad it is as if you need actual serious help you wont get it, they will cause your death, they dont know what they are doing. they are clueless.my indian friend at work had kidney stones, she went to the nhs crying in pain and they ignored her sent her away and said to take some pain killers and ignore it... they didnt even diagnose properly they kept saying "could be this, might be that" and was unsure.... she was really annoyed at this because in her country you get treated right away, and you dont get sent away without treatment. she went to india for 2 weeks on holiday, while she was there she went to a hospital and got surgery, in india you can get surgery on the very day you walk into the hospital and get seen to right away and surgery within at least 12 hours.... they sorted her issue and removed 8 kidney stones... shes ok now.... she was suffering under the nhs because they didnt do anything and couldnt do anything and didnt even know properly and sent her away. she now agrees that private system is better than this. only cost her like £700 but she was willing to pay as she wanted it sorted and it was agony and the free nhs doesnt do anything and leaves you suffering in pain and refuses to help.we have to face the fact the nhs needs to be completely changed or scrapped.... for the betterment of our health, so that we can actually have a health service.
Pixiefox said: From the inside, it can be very disheartening and demoralizing. It's had decades of mis-management.
Agreed - this is my understanding too, and the point I was hoping to make above.
Pixiefox said:However, that does not excuse a health professional laughing at a patient, or giving them "advice" which is inappropriate or possibly harmful.
Agreed - absolutely - no doubt!
I was making a specific commentary on the specific question raised by #Jermaine, namely;
Jermaine said:In short: I have no faith in the NHS’ ability to help autistic people. How about you?
It was this specific matter/question that is (hopefully) addressed by my comment.
Hi Number
I used to work in NHS finance some years ago, so I completely understand what you are saying. From the inside, it can be very disheartening and demoralizing. It's had decades of mis-management.
However, that does not excuse a health professional laughing at a patient, or giving them "advice" which is inappropriate or possibly harmful. I feel that bad treatment is worse than no treatment.
I'm so sorry you have had those negative experiences, and unfortunately I'm not going to be able to give any advice, although I wish I could. I lost faith in the NHS years ago, before I even knew I was autistic, so I fully empathise.
I have read that neurotypical people have a "belief web" and that they think in lockstep. This means that new ideas and new ways of doing things can take years to be accepted and implemented. This is a trait of the neurotypical mind, in the same way that we have difficulties dealing with some things because of how our minds work.
I don't know what the answer is, but I think that autism is still seen as pretty rare, and health professionals are not properly trained to understand it. I believe that there are many, many undiagnosed autistic people struggling to get through life, like I was for over 5 decades - but a lot more adults seem to be being diagnosed now, so hopefully as our demographic grows they will have to start accepting and supporting us. I have tried to educate people I work with, and none of them have made me feel stupid or have invalidated me. It's a slow process, but there is hope. You are not alone.
In short:
I have no faith that the NHS could possibly have access to the requisite funding TO ENABLE the NHS to "properly" help autistic people with the plethora of diverse and complex needs that are known to exist.
A subtle, but important distinction.......I think we must be careful not to universally besmirch the NHS which is on it's knees. The clinicians, surgeons, nurses, porters, pharmacists, doctors.......all feel pretty overwhelmed and are in some form of shutdown or burnout at the moment (from what I understand from people I know, and what I read in the press)......so we should be careful NOT to make them feel more hopeless and inadequate than their current resources make them.
I'll pack up my soap box now, and retire quietly to the shadows.
[Disambiguation - Jermaine, I'm not having-a-go at you above....you raise important matters....I'm simply giving my opinion on those matters.]
Im thankful to have an Adult Autism Intensive Support Team that operates in my area
Can you access this service?
I agree with a lot that you have said, and have similar exoerience x