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

A Walk to the Gallows

An elderly lady is helped to her chairSo we have had World Autism Awareness Week, and people have fawned over the National Autistic Society as though they were the Virgin Mary herself. Chris Packham even showed up and retweeted their latest video. The reality though for the people relying on council funded social care, and zero hour unqualified support workers, feels like a walk to the gallows. It slowly strips you of your humanity as you become a “client”. You are a appointment. Any kindness one might want is met with a standard letter about responsibilities and entitlements.
You are denied care, suffer continuous forms demanding to know your personal details, and if you manage to achieve any support it is only support because they haven’t yet found a name for professionally stripping a human being of their humanity. Unless you use the word “torture”

I am highly intelligent, highly motivated, and yet today a 25yr old woman sent me an email that was embarrassing and patronising, and to make matters worse she should know better. I also received the Friday brown envelopes from local authorities cutting this, demanding that. Pages and pages of questions when they are supposed to be in the care business. So humiliated and alone, so beaten down by the cruel and ignorant, I broke down and cried. This is the reality that the Autistic Society doesn’t want you to know about. It is a business that sells a lie, and most want to believe that lie. They don’t want to believe that poor autistic people are crying in despair, because of the lack of support. Support that a charity should provide for free. This is the meaning of charity.

Celebrities like Chris Packham who came from a good home with good parents and who got the help and love he needed, understandably support such charities as the National Autistic Society. It is of his world. And the support they offer is for his people. The comfortably off middle-class have never had to endure council care. Be intimidated by the DWP. Our experience of autism is not what people want to talk about. They like to talk about awareness and work and possibilities. I would suggest that people who are comfortable, stick a big poster of Maslow’s Triangle on every wall in their houses, and think what life is like for those who aren’t lucky enough to have good support networks.

 

 

Burn(t) Out

slaapkamer-donkerI have been researching this subject my entire life. And yet I am only just beginning to understand it. And like most people I thought Burn Out was exhaustion. I thought it meant being very very tired, but I was wrong. When a autistic person is burnt out they are not functioning. They don’t have the ability to help themselves. This is a big issue with the insane positive thinking culture of the West. As not helping yourself is seen as lazy, giving up, giving in, victimhood, pathetic, not British. And of course that is nonsense, and not only is it nonsense for neurotypical people but it is nonsense for autistic people, except for autistic people like everything else, it is vastly magnified in its ridiculousness.

Autistic people have issues with executive functioning, and executive functioning is what is required to look after yourself. You need to recognise when things are going wrong, see a problem, and you then take action to solve the problem. Autistic people often can’t see when they are struggling with life, because they are always struggling with life. Burn Out is when that struggle becomes so extended that they are barely living. And what’s more they sense something is amiss, like when the steering begins to go on a car, but they can’t understand it. They haven’t the tool to fix the steering. They need a psychological AA man to come out and get them back on the road. But they don’t know how to call them, if they should call them, even what calling them means. Or where the phone is. And then there’s the phone? They just know the steering doesn’t feel right and they are heading for a ditch.

Autistic people are generally very capable people, and if they are like me they will want to solve a problem. If like me you are a problem solver, burn out will mean you burn out even more. You do do do until you fall into bed, and you’ll only fall into bed if the fog clears enough for you see a image of your bed in your head, with you in it. You will not put the solution of bed, together with the issue of burn out, and consequently find a temporary solution. Instead you will look at inane things on the internet, get angry at things you’ve long identified as not worth getting angry at, you’ll skip meals, run out of toiletries, begin putting your hood up more so the world is less excruciatingly painful to be in. In short, you’ll ENDURE. And autistic people have been enduring pain since they were born. It seems normal to ENDURE. Until, you are lucky enough for something to trigger a part of your brain, your autistic brain, and that is when you STOP.

I am learning so much from my autistic brothers and sisters on Twitter. Without them I would be dead. In particular I want to highlight and thank Megs who produces video blogs in which she talks about autism and her autistic life. Watching Megs has helped me understand myself, but particularly because Megs is artistic and similar to me, I can very much relate to what she feels even when she doesn’t understand herself. What happens is she holds up a mirror to my executive functioning, but because I am processing it with my frontal cortex, I can then understand it. This in turn means I can take action, even though it isn’t coming out of my executive functioning tool box. This makes complete sense.

If you are feeling as though you are walking through quicksand and you simply are not functioning, perhaps you might find it helpful to read this, or watch Megs, or someone who you relate to, and you may then be able to use that mirror to give yourself a break, and rest, without guilt, and be a cat for a while. Enjoy resting and eating and watching.

Less Than

iu

When you are working class, and particularly working class and poor, you are either one of two things to the system, you’re a conformist who aspires to be middle-class, or you’re a waste of space. Add Aspergers to the mix and you’re someone, almost a thing, who is bullied, ignored, treated “less than” in everything. There are no special arrangements made for you, no helpful adults and services and churches and after school clubs for you. You learn very early on that your room, is your only salvation. And that is where you go to to escape the monstrous world of neurotypical Capitalism, where being poor working class with Aspergers means you’re a broken cog, a useless eater, a thick kid or a troublemaker.

When you are 16, like all children, Western society immediately stops any resemblance of kindness and you become a part of the machine. No university for a poor working class kid with Aspergers. You will usually be shoved into the Co-Op or the council sweeping the streets, or if you’re lucky you might find a job like a Postman where you spend much of your time alone, but you will still be “less than”. You won’t enjoy the care of services and communities that the middle-class teen enjoys. You won’t be seen as special or unique, your abilities won’t even be considered. You are “less than” in a system that sees being poor and working class and disabled as something to, at the very best, escape from.

I was inspired to write this article by the experiences of a few people on Twitter who thankfully didn’t suffer from being working class and autistic. They were born on the right side of the tracks, and while they of course found the world a confusing and challenging place, they didn’t have a system designed to destroy them to also contend with.

I am a working class adult. I was born autistic and I’ve been bullied by the system all of my life. The fact I’m still alive is a testament to my strength, and the will of the human spirit. My high intelligence has always been seen as a danger to the system that only sees me as “less than”. I don’t aspire to be middle class, and I’m not ever going to allow myself to be consigned to the mental health ward, or the Co-Op. And at the moment my anxiety is very high due to more bullying by my council and the government who together see me as lazy and a liar, just because my autism means I can’t do some things. The system now only offers help if I can pay for it. Even the National Autistic Society only offers support to those who have the funds to pay for it.
So when you see the wonderful examples of what autistic kids, teenagers, and adults, can do with good parents, the right support, clubs and churches, on Twitter and in real life, please remember that for every happy autistic person, there are a hundred still being bullied by the system.

Helping Others

iuI was lucky enough to help, or to try to help, a few people today, and it is a honour and a blessing to be able to do that. Helping others is the best feeling in the world, and we used to live that way, in small groups where everyone helped each other, and that was how the community thrived.
On Twitter, the Autistic community is very special. We all understand the struggles we face, we’ve been there ourselves, and even if we can’t solve a problem, we can send genuine love to people who are feeling anxious or overwhelmed or depressed or lonely.
I find my Twitter account where I am in contact with other autistics to be far more nourishing than any other account I have, where people rarely talk about their real feelings. Having other autistics who don’t do small talk is a guaranteed way to achieve some deep and meaningful human communication, and I am always grateful that this resource is available, its free, and nobody can take it away.

If you need a hand with anything, please do get in touch. I will do my best to help, and it will never be a chore, it is a blessing.