Rain

I am in bed and I was feeling numb and lonely and the radio began to play on my mobile phone. It was Radio Ulster and Eve Blair on the Late Show. It reminded me of what I need and love, depth and quality of communication, and music and art that reflects that. For so long I have had to survive surrounded by shallowness and I have felt like a fish gasping for air. I became numb from the stupefying  air I was sucking in.

I may never find the people I need in my life, those with depth and passion, but if I don’t I still have art and poetry and music and philosophy and nature. These are my life blood. I simply cease to live without them. So I am going to invest in a new music system, and I’m going to start visiting the cinema on a rainy afternoon when they are almost empty. I’ve also started another group for like-minded individuals in my area who need the same soul-enhancing qualities to survive in this mindless age of humanity.

It’s raining, but I’m alive underneath this shroud.

Conspiracy

The bullying has reached such a crescendo that I am in shock and my physical health is suffering too. I need to end the hold they have on me.

I have suffered bullying before. All of my life. I know how it begins, what the bully will have in common with all bullies, their inadequate fault that they project onto their victim. The excuses they use to justify it to themselves. They are just “stubborn”. They aren’t bullies. They are nice people. I know how this works, but still I have this belief that someone somewhere will act like a humane human being and be kind and do the right thing. But it doesn’t happen. Bullying happens when a inadequate person is in a position of authority and they have a hold on a person who relies on something they control. The bully is given permission by either, others in the organisation conspiring to break the victim, or by senior people doing nothing to stop the bullies actions.

I cannot go on living like this. Being traumatised by people who are supposed to be helping me. It is deeply re-traumatising. It is dangerous. It is unforgivable. This, as Ken Loach famously said, is conscious cruelty. The only thing a victim of bullying can do is to walk away from the situation. That is the only act of power left open to them, and by walking away they save themselves. Abusers do not see the light. The very rare few, may, years later, be forced to see what they did, when they themselves reach a crisis, but most bullies will go to their grave as a bully.

I am autistic. I don’t wish anyone any harm. I am a gentle person. I go out of my way to resolve conflict. I dislike conflict. I am also not a victim. I will stand up for what I believe in. I will protect myself. I have a duty to myself to take care of myself.

I am a strong person and I do create solutions and I am courageous and I will face my fears and put myself in difficult social situations in order to create a better life for myself. I have a right to live in peace and to be happy. I will therefore leave the services that have been bullying me and I will reject the involvement of social services in my life. I will use holistic methods to keep myself well. My shed, my cycling, nature, and I will continue to search for those beautiful humans that I know exist, out there, somewhere.

I am Being Bullied by a Support Service

I was on Twitter and I saw a post that said “When you feel paralyzed by fear: write. Even if you’re not a writer, write. If you feel anxious, write about your anxiety”. Well I am a writer, and I am grateful for this reminder to use my talent and to help share what I’m going through. Bullying is so devastating because it is kept hidden and the bully or bullies use gas lighting to keep the victim disorientated.

I am autistic, and I use Direct Payments which are paid for by my local council, to purchase personal support to enable me to get out of the house. Unfortunately most of the private companies who provide these services use untrained staff, who are on zero hour contracts, and the people who are in charge of them, are often bullies. This is possible because these services are not regulated by the Care Quality Commission or the Local Ombudsman. They are unregulated. I believe they are the only service in existence that provide “support” who are unregulated.

I have used several organisations over the years, and they are all highly toxic. Why? Because they can be. It has been very damaging to my health, and often leaves me in despair. Let us call it for what it is. Abuse. The abuse of autistic people is not a pretty thing. And I am not a weak person. Yet even I am often driven to a state of terror by these people. People who cut support, change support, put me with people who are totally untrained and unsuitable. People who bully if you complain.

I will not name individuals or organisations here because I don’t feel I can, and I am still a customer of this particular organisation, even though they are yet again threatening to cut the support. What I do intend to do is to keep posting about what I’m having to endure, so that I feel supported by my autistic friends online and the autistic community in general. Doing this helps me feel less isolated and alone with the abuse I’m being subjected to.

A Disappointing Mess

serveimageTwo days ago I walked into a trap. It was a trap set by the local NHS trust, and instigated by the Conservative government. I thought it was my autism screening. I was hopeful but nervous, but I thought I was going to a therapeutic establishment. I had taken my support worker with me, who isn’t really very good at being a support worker, but she is a person I like, and I think having her there on the day saved me from becoming very ill.

At my screening the Psychiatrist ignored everything I told him about autism. It was bizarre. Surely that was why I was there? And why were the questions I’d been given largely not about autism? Why were they ADHD screening questions? And why was I given questions to take home, that the psychiatrist had stated in a written NHS report, were unreliable? What was this “disappointing mess” as my therapist described it when I had emailed her about my experience?

The Psychiatrist, on the day, booked me a appointment at a ADHD clinic, despite my only answering a few ambiguous questions in the affirmative re; ADHD which were along the lines of “do I fidget” and “do I lose things” and “do I find it hard to relax”. Well I lose my glasses, and I like to play with my wooden beads, and I was brought up by a father who had the Protestant Work Ethic, which he passed on to me. I think in this respect I’m probably like most people on the planet. Yet the Psychiatrist shoved me into the ADHD box. Also he was determined to classify me as depressed. He asked me several times if I was depressed. I said “well things are hard and it makes me unhappy, but the tiniest bit of kindness can make me happy”. He asked again; “but are you depressed now? Well, 3 weeks ago my dog died, I was then admitted to hospital with a bilateral pulmonary embolism for 11 days. And Adult Social Services are constantly bullying me. And my support service is rubbish. Wouldn’t anyone be depressed? But I don’t suffer with depression. Never have. I react normally to being bullied and ignored, which was what was happening at my autism screening.

I got home on the day and I was numb and confused and then I collapsed into bed. The following day I went to my wild world to remind me that life wasn’t all bad. I looked at birds and rivers and reservoirs and I felt I could survive.

The following day I read in the news that the NHS were cutting back on diagnosing autism and would only diagnose the most “severe” cases. You can read about it here. That was when everything made sense. That was when the bizarre became reality. That was when I knew that the Conservative government were behind this plan to wipe autistic people from the record books and consign them to a life of misery, and that was when I stopped being confused and became furious. The Conservatives have a social care policy where they cut support for disabled people and try to justify that by saying they want to direct resources where its really needed, and that is what they are doing now to autistic people. Why would they do this? Quite simply because in the eyes of the right-wing if you  aren’t working you are lazy and a liar, and unproductive, and they just want rid of you. Yes, they want us autistic people to be isolated and to either kill ourselves or be drugged, the second option would be slightly a better option as their friends in the pharmaceutical industry need people to be diagnosed as ADHD because the general population are waking up to the fact that antidepressants cause harm, and these huge organisations need another cash cow. That’s us, the wrongly diagnosed and/or ignored autistic. We are the new fodder for the ADHD machine.

Zero Hour

serveimageSeveral years ago the Conservative government decided to conduct a “experiment”. The experiment was sold as beneficial to the client. It would provide more choice, clients who needed support which had previously been provided by trained social workers and NHS mental health staff, such as psychiatric nurses and psychologists and psychiatrists, would have the option to “choose” the support they received by having “Direct Payments”. Direct payments are where the local authority pay a private company or a individual, nearly always a private company, who then support the client to access the community or look after them in their home etc.
The experiment was supposed to last a few years and then it would be evaluated. What happened was that the results of the experiment proved that it made no difference to the quality of care the client received. That fact alone is frightening and an indictment on the mental health care of Britain. However, the experiment was not cancelled, and instead it has become the norm, and now private companies with untrained staff, can set themselves up as support services, and these companies will employ unskilled people on zero hour contracts. They are run by people who have no qualifications, no BA, no MA, in any mental health field. If a client is “lucky” someone may have taken a afternoon course, or they may have a NVQ in care, or management, but these NVQs aren’t worth the paper they are written on.

I have been the victim of several private support services. The people who run these companies are always without compassion where the client is concerned. If a complaint is made the service is immediately cut, as is happening again to me as I write. The actual “support worker” will have little to no experience in supporting people. The only qualification they need is to be willing to work on a zero hour contract. The result of this is that clients find themselves caught between completely unsuitable support and a aggressive social care system. Neither care about the client. This unholy union is about money. Social services want to pay as little as possible, as do the private support companies, and the cheaper the better. Ex-Bus drivers, office workers, people who frankly need mental health care themselves, become the only source of support to vulnerable clients, and if a client dares to complain they will quickly be labelled as a problem and dispatched. The private company and the social services will work together to ensure this happens and that they are protected from any legal challenge.
This is bullying, It is abuse. It is happening today in every town and city in Britain, and there is no protection for people as these private companies are not regulated by the Care Quality Commission. And let’s be honest here, the CQC are not without fault.

This situation must be exposed. It is ignored by every charity and news outlet and professional in the mental health field. For whatever reason this grinding down of vulnerable people into cash cows does not stir the blood of the social justice warrior. I ask that if you are reading this that you at least tweet it, and at best share it with organisations who are active and independent and trusted, and who work to help people who need mental health support.

I am autistic. I am being bullied by my private PA service and adult social services. This has gone on in one form or another for 40 years.

Autism Hospital

It’s been 10 days since a ambulance picked me up from home and dropped me off at one of my local hospitals. It all happened very quickly. My GP came out to my home and examined me, the next day a district nurse came to the flat to take many blood tests, and the next day I had to go for a x-ray at another hospital. And after that I was on my way via the ambulance to have my lungs looked at by a scanner.

I had pneumonia with blood clots on both lungs. The left lung had started to die and I was in terrible pain. But autistic me thought it would all go away. It didn’t and a lot of medication and treatment has followed. And the story should end there, but this story is about more than the physical treatment of my ailments. It’s about being autistic in a NHS hospital while sick.

Most nurses on the wards work to the medical model. Most are kind and human and go beyond what they’re required to do. And some are in the wrong place for the wrong reason and shouldn’t be nursing.  But really they are a minority. What is lacking in NHS hospitals is autism awareness and holistic healing. Person centred care. It’s hardly surprising seeing the complete devastation the government is inflicting on the NHS

I went 5 days before I bumped into Staff Nurse Tammy North. Tammy did exactly the right things. She didn’t say she understood because she said she couldn’t possibly put herself in my place and she said she didn’t want to say she empathises because it didn’t really mean anything. But she did say sorry and she was brave enough to sit with me in silence and convey her respect that way. And then she got on with finding out what I needed and making changes so I felt happier. And she was funny. And charming. And she shared her life as I shared mine. And that was all it needed. All I needed. A intelligent and deeply respectful person who saw me as important.

Tammy wasn’t the only angel. There were the occasional student nurses, one who gave me his WiFi password, and another who went in search of some pyjamas that actually fit me.

And I want to mention the domestic staff who treated me like a human before a patient. Who joked with me and asked about my life, and I about theirs. Few nurses did this. They need to. Which reminds me of Noma. Staff Nurse Noma from Zimbabwe. Like Tammy North, Noma is a excellent nurse. A nurse who told a doctor to “ask the patient”. That made me smile. And she stopped a junior doctor from moving me out of my side room. This would have been very difficult for me. I had been put in my room by a kind nurse due to being autistic on my day of admission. I don’t think I’d have been able to have stayed in hospital any other way. Noma understood this.

Our NHS hospitals are full of incredible women caring for patients day in and day out. We are all incredibly lucky and blessed to have these women. They helped me cope in a environment that scares me and I will never forget them.

Postscript: I felt I had to add to this story as things have not been, and are not, as rosy as one might deduce from the original article. I’ve had people giving out medication totally unaware of what I should be having, and this is despite it being written in a book that records all my care. I’ve had medication stopped that was improving my health and then have been kept from returning home because of the effect of that decision. I’ve had a staff nurse and a junior doctor attempt to take blood approximately 8 times, and fail. I’ve been given injections in the stomach twice a day that nobody had checked was strong enough for my weight and size. And I have had no support with my being autistic.  Zero. Despite my “Autism Passport” forming part of my notes. Despite my writing what helps and what hinders, I feel I am treated as a product. I feel invisible like a milk cow on a large factory farm.

Only when nurses such as Tammy North are on the ward does one feel safe and seen. And nurses like her are rare. Any other time it is a terrifying experience for me where one has no redress. One is powerless in the face of untrained or inexperienced staff. This is simply not good enough and the occasional Tammy North is not going to be able to save the situation. What’s needed is good autism awareness training for all staff, and a autism advocate able to visit the patient everyday and spend quality time with them. Hospitals don’t ignore diabetes  and neither should they ignore autism.

A Call for Action

iu“We must take action. I want to see an investigation into the violation of human rights in people with autism. I want to see increased surveillance of their needs, in every country. And I want us to be continuously asking people with autism what their lives are like, and what they need, so that they are fully involved in shaping their future. Only this way can we ensure their human rights are met.” Professor Baron-Cohen

Tomorrow is World Autism Awareness Day, and yet the largest British autism charity, the National Autistic Society, is not making people aware of the facts that Professor Baron-Cohen is making people aware of. They make videos about sensory issues and such but completely avoid the fact that in the UK, among those who have died by suicide, approximately 12% had definite or probable autism. Why would they avoid such shocking facts? The violation of autistic people’s very human rights, a fact that is driving them to kill themselves. Is it because the National Autistic Society receives funding from the British government? Is it because the British government want to scrap the Human Rights Act? Is it because the British government have already been found to be systematically violating the rights of disabled people by the United Nations?

While the National Autistic Society are using autistic people to make money and pay their executives high wages, we must be grateful that Professor Baron-Cohen is standing up for autistic people and making it clear that autistic people need autonomy and that is achieved by changes in the law, and holding abusive governments like the British government, to account, and that must be in the highest court in the land if necessary.

Professor Baron-Cohen’s keynote speech to the United Nations can be viewed here