Asperger syndrome

I’ve always been a very isolated person. I spent much of my childhood immersed in books of a level far beyond that appropriate for my age. I have never been comfortable meeting new people or in new situations, I had very few friends at school or college, and struggled to maintain any close friendships. I struggle with small talk, finding it difficult to know what to say and often end up with awkward silence around other people. The friends I have known have nearly always been computer geeks and the topics of discussion technical rather than personal.

A few years ago I began to notice something. My social circle was full of scientists, computer geeks and similar people. Many of  them had various problems fitting in with “normal” people too. Some of these problems were attributed to depression and anxiety but a couple of my friends were diagnosed with Asperger’s syndrome which is an autism spectrum disorder. I realised that I had some similar problems to these friends but as far as I was concerned I had managed to grow up, get through school and university, find some friends, and get married so I didn’t need to think about it. I functioned.

Then I came across the Autism-Spectrum Quotient. The AQ test asks fifty questions related to social interaction and preferences and gives a score which can identify those who may be affected by autism spectrum disorder. Here’s the introduction given for the test when it was published in Wired magazine in 2001:

Psychologist Simon Baron-Cohen and his colleagues at Cambridge’s Autism Research Centre have created the Autism-Spectrum Quotient, or AQ, as a measure of the extent of autistic traits in adults. In the first major trial using the test, the average score in the control group was 16.4. Eighty percent of those diagnosed with autism or a related disorder scored 32 or higher. The test is not a means for making a diagnosis, however, and many who score above 32 and even meet the diagnostic criteria for mild autism or Asperger’s report no difficulty functioning in their everyday lives.

I took the test and scored 32 which is about the level where it could indicate a problem. I still didn’t worry about it since I still functioned; albeit not very comfortably around new people, or when out at clubs or parties unless with my friends with similar issues. Since then though, I have come to realise that these issues were more of a problem than I realised. I would often find myself unable to cope with people and would cancel things at the last minute, preferring to stay in with my computer. I had some very awkward times when out for the evening, ending up in silence for half the evening sitting alone in a corner unable to go and talk to people. I realised that I had only reached the level of social interaction that I was at because in the past I had been forced to talk to people through church, then at university through the Christian Union, and then been introduced to people by my wife. I had learnt some social skills because I had to. A couple of years ago I joined twitter and started to talk to people about illness and politics. After meeting a few people that I knew through twitter I realised that I had a much easier time talking to them because I had already got through the parts that I struggle with by chatting on the internet first! I now have far less anxiety about meeting people in person as long as we know each other through the internet first.

There still wasn’t enough of an issue to follow up with any medical professional but I became severely depressed in late 2010 and have been seeing a psychiatrist for a year or so now.  My anxiety has increased to the point of panic attacks at the thought of going out around people, and doing things like driving to a destination but then being too anxious to leave the car. I knew people through twitter who have asperger’s and autism and chatting to them in the last few months made me realise that there could be significant crossover between Asperger’s and the anxiety which I have been trying to deal with. I re-took the AQ test and scored 39 – a score which I am sure has been boosted because of my depression and anxiety. A conversation a few weeks ago made me decide to raise the issue with my psychiatrist.

I was worried that what I said would be dismissed as hypochondria but to my surprise the psychiatrist agreed with me that I needed to address this and that doing so could well help me to deal with my depression and anxiety. He asked me questions about a few other things, which brought up problems with understanding speech, understanding anything at all in loud environments, being isolated and in my own thoughts in the middle of conversations, issues with being touched, obsessiveness, trouble dealing with changes and unpredictability. He has referred me to the Adult Asperger Service for a full diagnosis. I have received confirmation that I will be seen by the service but unfortunately the waiting time is sixteen months. Although that is a long time I am fortunate to be able to see them at all. I know that in many areas it is nearly impossible to get a diagnosis for Asperger’s as an adult. The National Autistic Society recognises that many people will be self-diagnosed because they cannot see a professional to confirm it.

In the meantime I have decided that I can’t wait sixteen months to try to start dealing with this and so I need to do some research of my own and find ways of coping with the issues caused by asperger’s and ways to identify what of my anxiety might be caused by that. I need to learn to understand this more and live with it so that maybe I can start to work on getting rid of my depression.

My thanks go to all the lovely people who have chatted on twitter about it with me.

This is a great article about adults with Asperger’s: The Hidden Autistics – Asperger’s in Adults

You can Take The AQ Test for yourself if any of this sounded familiar. I also made a record of one of my conversations on twitter about autism.

There is lots of information at the website of The National Autistic Society.

 

No wheelchair for you!

My old broken power wheelchair
My old broken powerchair

I wrote back in March about the death of the power wheelchair that I had been given and my quest to obtain a new one.  It was old but it served its purpose in letting me go further from home and use public transport without requiring another person to push my wheelchair. Since my ability to walk is fairly limited I do need a wheelchair when I am out of the house. There are four ways that I know of to obtain a manual or powered wheelchair.

  1. The NHS
  2. Lease one from Motability using the mobility component of DLA
  3. Buy one
  4. Get a charity to buy one

It should be obvious that buying one is not really an option for most people living on sickness and disability benefits. Many people who need a high end power wheelchair do lease one from the Motability scheme however that option is not available to those who already use their DLA to lease a car through the scheme, or who do not receive DLA at all. In some circumstances a charity might be willing to foot some or all of the bill for a power wheelchair. Specialist charities for certain diseases or impairments might do this although in practice most do not have this option either. In my case there is a charity that helps people in the area that I live in who might be able to pay for part of the cost of a power wheelchair for me but since charity funds must be carefully looked after they require me to need a wheelchair but be unable to get one from the NHS before they will help. That leads me to the main option, to ask for a wheelchair from the NHS.

Soon after my power wheelchair broke an occupational therapist referred me to Worcestershire Wheelchair Services and I was told that I would get an assessment but that I would have to wait a long time. In the meantime I bought a manual wheelchair using my credit card. I have a bankruptcy in my past because of my illness so that credit is at an interest rate of 34% APR.

I knew when I was referred for a wheelchair assessment that I would not qualify for a power wheelchair because I only need a wheelchair when out of the house but that was OK because once I had an assessment I could turn to my local charity. As I understood then from other doctors and therapists I should qualify for a manual wheelchair, although probably one with small wheels that required an attendant to push it because self-propelling a wheelchair soon hurts my arms as much as walking hurts my legs. (This is why I purchased a self-propel chair, since I would like to be able to turn myself around even if I mostly have someone pushing.)

Then, today, I received this letter from Wheelchair Services. (Click to enlarge.)

Letter from wheelchair services

The letter informed me that I would not receive any wheelchair from the NHS because in Worcestershire they are

“Currently only able to supply wheelchairs to people who meet higher level needs i.e. to those clients who have a permanent mobility problem, who are unable to walk and who require a wheelchair within their own home.”

So, because I can walk or stagger around at home, I will not receive any kind of wheelchair to help outside where I cannot walk more than a few metres or stand up for more than a few seconds – not even a manual wheelchair. They won’t even visit to assess me. There are also many people who need a power wheelchair but are unable to get one from the NHS because they, like me can walk to some extent around their own home. In a lot of these cases they would use a wheelchair inside if only they could fit one in their home, but because they cannot they too are denied any help from wheelchair services. I know of several people who are currently trying to raise funds through donations to purchase their own power wheelchair because of this.

I’m not too worried about this in my own case because I have the manual wheelchair that I bought, and I have my wife to push it much of the time, and I still hope to get help from a local charity. I am far more worried about all the other people who haven’t been so fortunate and have no chance to buy a wheelchair, no charity help, no car and no one to offer lifts. I struggle to understand the justification for the NHS in Worcestershire not giving a wheelchair to people who need one but only when outside. If applied nationally, this policy would trap tens or hundreds of thousands of people in their own homes, unable to go out to medical appointments, to buy food or to visit family and friends. I don’t know how long this policy has been in place in Worcestershire but I hope that it is the only area doing this.

Worcestershire Wheelchair Service informed me that their qualifying criteria have been this way for a number of years due to low funding. Worcestershire is not looking like a good place for a chronically sick or disabled person to live right now; Worcestershire council are planning to remove funding for care at home for a large number of people and send them to live in care homes instead. This is a huge backwards step, a removal of freedom for a lot of people and reverts to the old method of locking those with disabilities away from society. This policy on wheelchairs will ensure that more people are trapped at home and so require care from the local authority, which in turn may put them into a care home.

Are we as a country really so short of money that this is the route we want to take?

“If you don’t like it, go somewhere else.”

“If you don’t like it, go somewhere else.”

This response to an argument is far too common. I’ve seen recently it when complaining about the monarchy and the Olympics, as well as on lots of other occasions. However, that phrase is loaded with assumptions, privilege and intolerance.

I object to the monarchy. I don’t want the head of state to be a hereditary position – they should be democratically elected to represent the people. The head of state is meant to act as a control to keep the government in check. The queen theoretically has the power to veto legislation, to select the prime minister, and a few other things but she cannot do so because it would be politically impossible. Therefore the queen is useless as head of state and is basically only good for ceremony. I think it is wrong to define royalty as somehow better than everyone else and to call people subjects instead of free citizens. I certainly hate the celebration of the jubilee, all deference and nationalistic flag-waving and spending millions on extravagance at a time when the cost of even food and shelter is being denied to so many because of austerity.

The reason that I have presented this argument, however, is that you don’t have to agree with the views I have just expressed. We have basic human rights which are stated within the European Convention on Human Rights as a right to freedom of expression (Article 10) and a right to freedom of thought, conscience and religion. (Article 9.) In a democracy people may vote to select a representative or a policy based on the views that they hold. Unfortunately I can’t vote to abolish the monarchy because MPs have sworn loyalty to the queen and cannot introduce such legislation. I can, however, express my dislike for this situation.

There are many injustices that I would like to fight and the monarchy is a long way down the list. The jubilee has made it rather hard to ignore recently though, and when people express their dislike of the queen a very common response is to be told to live somewhere else. The problem is, I can’t, and I shouldn’t have to anyway.

I am chronically sick. Physically and mentally I would find it extremely difficult to cope with moving house across borders although there are ways around that if I had money. If I moved I would be separated from my support network and would require even more state support. My illness forces me to rely on income from benefits because I am unable to work and as a result it’s not just a case of paying to renew my passport and buy a ticket to another country; once there I need food, shelter, clothing, medicine and all the other things necessary to live. Unfortunately we live in a world of closed borders, of xenophobic people and of language barriers. It is hard enough to move to another country to work, but next to impossible to move to another country to live on welfare. (For what it’s worth, I once left the UK for six months, but was forced to return to find work.)

Even if I could leave, though, why should I have to? This is the place of my birth, the place where people share the same language and cultural references. This is where my family and friends are. I do not forfeit the right to those connections just because I dislike the government and the monarchy, and I certainly do not forfeit the right to complain about those things just because I am too sick to work. (See: Ungrateful.)

Freedom of expression and of thought means that we have to share with people who hold views that we don’t like. We can oppose those views, we can express our opposition, and sometimes views run over into threats which the law addresses, but we must not demand that people leave just because we disagree with them.

 

Ungrateful

I am chronically sick. My illness forces me to rely on income from benefits because I am unable to work. I have just been told that to object to the monarchy and to hold political views while I live in this country where the welfare system looks after me is ungrateful. I can’t begin to address how wrong that idea is.

It stems from the same point of view that says I should lie in bed all day and think about how terrible I am to need taxpayers money to support me. The idea that I do not work so I have no right to any quality of life, to leave the house or to have any enjoyment in life.

It is the same point of view that says that I live on taxpayer’s money, so every tax payer has a right to question how I spend my income, and that I should never spend it on anything nice or entertaining.  The point of view that is jealous of my Motability car because I obviously don’t deserve it and I shouldn’t have a better car than someone who works. (Never mind that the car provides a way for me to get to my medical appointments and to do things for myself rather than require yet more help from the state, and that I lease and pay for it out of a benefit that I already receive.)

These are the views that lead to sick and disabled people being reported for benefit fraud because someone saw them walk a short distance or carry out some task that other people feel makes them fit for work, without any idea of variable health conditions, good and bad days, of doing something despite the pain or the payback later because the task must be done.

These are the kind of views that have allowed the government to actively remove much of the support given and the progress made over the last thirty years in the lives of sick and disabled people. These are the kind of views that lead to disabled people being locked away in care homes to die quietly without bothering anyone. This government has reversed things so much that councils are actually moving sick and disabled people into care homes to save money. Back to the age where they are out of sight, out of mind.

These are the views that led the Nazis to murder 240,000 disabled people between 1939 and 1945, so forgive me if I complain about the government and hold political opinions of my own. I have good reason.

Worcestershire County Council to put disabled into care

Lest We Forget: Eradicating the ‘Useless Eaters’ in the Third Reich [PDF]