Joe Powell

Presentation to the Falling Through the Cracks Conference, 16th July 2009

1. Growing up through life it has never ceased to amaze me in political circles when a government is criticised for anything whether it is the state of the NHS, the army or any other political topic, the government of the day always seem to focus on figures and statistics as a justification that they are delivering what is expected of them. We hear statements such as we have spent x of millions more than the previous government or we have increased spending on a particular issues of political concern by 20%. By focusing on the quantity of money we seem to lose focus on what really matters and that is in the delivering of good practice and quality support for people with autism and other disabilities. The issue should not be about the amount we spend but in how we invest in the future of any person with a care need.

2. In my humble opinion one of the biggest misconceptions about autism is that it is a difficult condition to work with. I would argue that autism is not necessarily difficult to work with at all, it may be difficult to understand but working with it does not have to be as difficult as sometimes we make it. In theory I believe that someone can work successfully with someone with autism with little knowledge of the condition at all, but through understanding that individual and their needs. I also believe that if we can get the right environment for each person on the autism spectrum we become 95% of the way to succeeding in supporting that individual successfully. In a nutshell I am saying that good practice in autism or disability does not necessarily always have to boil down to money or complicated intellectual theories but in getting the good fundamentals and principles in place for giving people the best lives we possibly can.

3. One of the difficulties with working with autism is the fact that it is so hard to actually define and understand what the condition is. You can have two people with autism, one too chatty and social, the other quiet and withdrawn yet both could be described as being the typical stereotype of their condition, that is what particularly baffles people who are new to working with autism or who are trying to learn about it for the first time. There are many people in this room today but not one of us (including me) really know what we are dealing with. This is the biggest challenge for organisations such as Research Autism. The more we learn about autism either by looking at the physical workings of the brain or just in getting feedback from the many people with the condition and their families the closer we come to finding some answers, the closer we come to finding answers the more able we are to know how to deliver support and the appropriate services for the many people in this country with disabilities or any form of care or support need. To me this can only further enhance our personal centred practice.

4. I feel one of the biggest ways we can change our understanding of disabilities, how to work with them and how to increase the support for anyone with any care need can be largely influenced by central government. Sometimes the problems that people with disabilities have and those charities and organisations who support them face is the limitations imposed on them by the system itself. We have a care system now in which the government has one policy for all people with disabilities or support needs and it means that from a personal point of view people like me get caught out and I end up costing the tax payer far more money than is necessary because my personal circumstances are dealt with like everybody else who has a care need, with little recognition to whether that system deals with my personal needs appropriately or not. Immediately this crazy system means that automatically people with disabilities are disempowered and dis-encouraged to make the progress they are capable of.

5. Let me use my situation as an example, I am living in my own flat in Newport South Wales after recently leaving the care system after making a massive amount of progress. I have an individual budget and pay my own care staff who work solely for me and at a much reduced rate of funding from being in care. I have far more support than I have ever had before. However moving on from here is going to prove very difficult for many reasons. I am a student at the University of Wales Newport doing a BA Honours in Documentary Film and Television and am only allowed to do my degree part time because the current benefit system says that if I can study full time then I can work full time and if I can work full time I should not have benefits. If I lose my benefits I lose my Individual budget and if I lose my Individual budget I would have to become vulnerable and go back to self harming behaviours in order to get my support funding back and therefore would have to start on the bottom rung of the ladder, remaking all of the progress I have currently made.

6. The reality of my situation is that I could work and study full time and I could actually fulfil my ambition of paying tax, people always laugh at that sentiment 'why would you crave paying tax Joe'. Quite simply because I want my dignity and I want my self respect and I want to contribute to the society I live in and am proud to be a part of. Something I think most people with any form of disability would love too. For most people leaving home, getting a job and paying tax are part of the mundane humdrum of ordinary life they take for granted but for me and many like me it would be the achievement of a major life milestone. In reality not only could I do this, contribute to society and give something back to my community both in terms of tax and my skills but by keeping my budget, I could become less dependent on others, reduce the budget until (in my case) I will not need any money at all from social services and then I would not be dependent on the state for anything.

7. By giving me a little incentive to go out into the work place and giving a little short term investment into my future, it would cost the tax payer far less than it does now and instead of being a redundant cog within society, I could be an essential part of the British workforce. At the moment the system says your either well enough to work therefore you need no support or you have a support need therefore should not be working. Even as a person with autism I can see that the reality does not need to be so black and white. The government talk tough about so called 'dole bludgers' and people who exaggerate and fawn disability draining the tax payers purse, but they miss the fact that lying here in Britain today is a hidden workforce, made up of people like me with genuine disabilities who don't want handouts or charity but short term support and investment to become full members of society. By giving people like me these opportunities we not only save money for those people with disabilities who would need long term intense care but we make it less attractive for bogus claimants to abuse the system.

8. Maybe I am making this sound a little too simple or am coming across a little naive but the message I am trying to convey is that perhaps it is not just about the way we deliver care or understand the needs of individuals but perhaps we need to change the way we think as a society about disability and how we can support people with disabilities and charitable organisations such as Research Autism and The National Autistic Society into being empowered into building on their work in giving the best care and support possible and I believe a lot of this can be changed from simple legislation and policies from central government.

9. One of the things that really excites me about the work Geoffrey, Richard and everyone at Research Autism are doing is the fact that this work is not only so important and so central into our understanding of autism spectrum disorders but it is a pioneering organisation in laying the foundations of a better quality of life and better understanding of autism for generations in the future. The charity Research Autism is new but it is so important to people like myself on the autism spectrum. People who have been told how their condition effects them and have read the books but still feel something is missing and like something just doesn't add up. People like me who although articulate, still can't express certain deep and hidden feelings that we're desperate to communicate in order we can address and move on from these difficulties but have to ignore them and pretend they aren't there in order we can get on with our everyday lives. Research Autism allows people like me to get actively involved in their work and I feel like they value and encourage the contribution of people on the autism spectrum, something in my experience is very unique.

10. The nagging difficulties and unanswered questions in my mind and of many people I talk to on the autism spectrum tells me that we still have a long way to go to understanding and developing quality support for people with autism, but as the Chinese philosopher Confucius said 'every journey of a thousand miles begins with the first step.
In terms of delivering good support for people with autism we need to make sure that we are constantly providing the best, up to date training and education for those working with people on the autism spectrum. People with autism have a potential, a potential that is often forgotten by many people who get caught up and swamped in the negative stereotype of the condition, focusing on what can go wrong without focusing on what can go right and how we can take the individual further to best improve their quality of life, maximise their potential and not just focus on the care they may need.

Speaking about my own personal experience as somebody who had very extreme behaviours I know the importance and the benefits of getting the right support. I displayed many challenging behaviours, behaviours caused around my black and white thinking, obsessive compulsive behaviours, depression, anxiety and was non verbal for over ten years, all experiences that I feel were as a consequence of living and coping for twenty years with a condition I was not diagnosed with and that was not understood by the medical profession. I am convinced that these extreme behaviours came about as a psychological consequence of the way I was treated, sometimes by those who loved me most, because they thought I was a naughty or mischievous child. People whose lives (not just mine) were turned upside down and almost destroyed because of the lack of understanding and knowledge of my condition. There is a world of difference between bad behaviour and autistic behaviour although they can often appear the same. I am absolutely convinced that if I was a child growing up today, my life and my future would have been very different. I would still have had my autistic traits and my obsessions, but they would not have been allowed to spiral out of control and become the massive problem they eventually were and my family would not have been torn apart because of it. My family relations are healing very well, I am lucky, but I know some people on the autism spectrum who have had no or little contact with their families for years, because of the strain their misunderstood and baffling behaviours put on the family unit.

With the correct support and guidance my life has completely turned around, I am very chatty, social and outgoing, get involved a lot in the local community, reduced a massive amount of medication to the minimum amount needed to cope and all in all have the potential to live a very happy and fulfilled life as a result of the correct support and understanding of Joe as an individual as well as Joe's autism.

I eventually was able to put this into practice out in the so called 'real world'. I get on well in my local community am very popular and nobody would even suspect I had Asperger Syndrome. Those who do know, just can't believe it because I seem to cope better than anyone else they come across. However this took time, a lot of time, but my experiences have taught me one very important and fundamental lesson about autism, and that is the fact that absolutely everyone with an autism spectrum disorder has the potential to have a good quality of life, providing that we keep building on what we are continually learning and developing. I am confident that within ten years time, experiences like mine will be incredibly rare and that as long as we remain positive and work hard, improving the lives of people with autism and their families is a very realistic and achievable goal.

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