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.
TheCatWoman said: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
For the NHS management they don't look at the care of the patient but the maths involved in that care - they realise that to give you the care needed to make you feel better and be a more ably functioning person would cost them thousands of pounds and even then you would still be autistic and likely to experience a relapse (eg meltdown) again possibly many times.
You become a big drain on their budget at this point so they have made a concious decision that it is better to offer the bare minimum for good PR than to offer you something that works.
The fact that we have much higher mortality rates (often at our own hands) is a good outcome for them - one less trouble patient who probably doesn't contribute tax/NI and will only consume services.
For these managers is it an obvious way to save money and since we are so poor at advocating for outselves as a group, there is unlikely to be much resistance.
This is the WHY it is this way and with government funding looking just as sketchy under Labour then I don't see it ever changing.
I think the best solution is for us to focus on looking after out own - work on charities (like NAS) and spread understanding of autism where we can. Let other autists know they are not alone and guide them to help where needed.
It won't work for all but it may work for enough to make a difference.