The World is my Lobster - A positive Asperger Story
autism news - 10 August 2011
By name is Joe Powell, I have a wonderful life, at least on paper anyway.
Since making a dramatic improvement whilst being in care (from being non-verbal and very dependent to being almost completely independent) my world (in the words of Arthur Daley) is my Lobster. One thing I have learned through my battle for independence is that life for people like me with Asperger Syndrome can be very bright indeed and that in time it gets easier and easier. The secret of my success is years of living with my condition and learning to live and cope with it. Sounds simple I know, but let me explain.
When living in care I was determined to become ‘normal’ or ‘like them’ i.e. the other people in society. I defined being normal as having a job and paying my own way. Because of the massive progress I made I thought I was on the way to becoming neuro typical. Of course I was wrong on so many levels. Many people cannot see my Asperger’s because my intelligence and appropriate social behaviour hides it well.
There is of course a world of difference between social intelligence and academic intelligence and because I was always considered academically bright, I have frustrated and exasperated so many people who think I should be achieving so much more. The reality for me was that I was as autistic as any service user in care but I didn’t share the learning difficulties that most people in autism specific services had.
When I was diagnosed with Asperger’s in 1996 it was a huge relief and I realised I was not a failure and that my condition was not my fault. However after living in care and not living up to the stereotype of autism in the way the other service users did, I started to doubt my diagnosis. I think this was because my difficulties were around mental health issues caused through a life of being misunderstood and in those days autism specific care services (whilst not ideal for someone like me) were the best support available for people like me.
This was why I was so keen to help promote the autism scanning machine, because I was dying for physical evidence of my condition, and I got it. My brain was clearly autistic (as I originally assumed). I had always believed that autism and learning difficulties were two separate disabilities in their own right and sometimes those we assume are ‘more autistic’ than people like me, aren’t necessarily ‘more autistic’ but ‘as autistic’ with learning difficulties to boot. Some people still confuse the two.
Since starting my Individual Budget in 2008 I have come a long way but the biggest priority has been in recovery. I have a wonderful team who have been able to put in the intense 1-1 input I have needed to move on with my life and there is no doubt we are moving forward all the way. The most important thing I have learned during this period of time is to live a realistic life, a life that is right for me. Whilst I try not to make my condition an excuse to avoid making progress and taking responsibility for my life, I have realised at the same time that I do have Asperger Syndrome and it is always going to be there. I still need my structures and routines and I still have O.C.D cleaning rituals at times but rather than deny them to appear normal, my team support me to keep them in control. I used to think that it was only people like me who had to conform to society but of course we all have to conform to society. The difference is that people like me have to conform in a different way, or we need a little more support to do it.
Indeed as I am getting older it is becoming just how autistic I am, and I am accepting it and keeping it in check. I still think in rigid ways and need to do everything in set block patterns. I still need my routines and my flat to be perfect before I can settle down to do University work and there is no doubt all of this holds me back from making the progress I am capable of. Holding on to anxieties from the past and going over and over conversations (that most others would forget about) means that for me the past is sometimes as alive today as it ever was. Sequencing time is something that has always caused me problems too. One of the big positives of the way Asperger’s affects me (and one of the biggest flaws) is the fact that I believe I do not discriminate. The fact I do not make value judgements (age, race, sex etc) means I have a unique ability to be open minded and fair with everyone I meet.
However on the down side it means I sometimes don’t see the bigger picture and this makes my world confusing. When I go to University for instance, if I don’t connect with some of the other students, I can feel very depressed and anxious. What I don’t seem to do however is to be able to assess the reasons why I am not connecting. Sometimes this is because I don’t live on campus so people don’t get to know me as well as others but also sometimes it is because my fellow students are much younger than me, but I can’t put that into context. I forget I am 34 and they are 19, sometime I don’t think I am aware I have even aged at all. Sometimes I walk straight past other students because I find it so hard to recognise them outside the context of the classroom. I sometimes worry that I appear rude, so I either disclose my disability to them and explain it (which gets mixed reactions) or I make a joke and say ‘please accept my apologies, I assure you I am genuinely am this thick. Strategies are my best defence socially.
Indeed the University environment is sometimes one of the most difficult places for a person with Asperger’s. I enjoy University because it is a structured and safe environment but it can also be a very social environment. I find when I am in a further education setting I revert back to the way I was at school, the clumsy, nerdy kid who was susceptible to bullying. It still amazes me how bitchy and primal the adult world can be. And this is where I am vulnerable. My social skills are superb when it comes to considering others and appropriate behaviour but where I do struggle is with the streetwise ‘pull the ladder up jack and sod the rest’ attitude which most people in life seem to adopt. It has been said that having Asperger’s is like living in a different culture and that certainly resonates with me. I don’t just feel that I lack the social skills that neuro typicals take for granted I actually think in many other ways I am socially advanced. I have an incredible amount of self-awareness and I believe an abnormally acute conscience. Because I am a person who is lead by his head and not his heart (and allow my logic to over-ride his human feelings) I sometimes feel I live my life like God, looking down on the world from above and marvelling at the absurdity of human behaviour.
This is why I think loneliness is always going to be a feature of my life. I have many offers of friendships but more often than not I do find friends a burden and a chore. I like to socialise with people in a work sense but I cannot think of anything more tying than going out for a drink with friends. Why would anyone enjoy drinking beer for 4 hours and wasting all of that time. Time in which I could be reading, working or doing my favourite pass-time of cleaning. Practical things of which I can see a positive outcome. I like a pint and like going out, but one hour is enough for me. This is why I don’t think I will ever have a girlfriend. Not only don’t I know what girls are for (at 34 years old) I would find being married and sharing a home and a bedroom with someone else sheer hell. Don’t get me wrong I have fallen in love with girls several times and I do get sexually attracted to girls. But it would never occur to me in a million years that I am allowed to have a relationship or that people actually have sex. And more to the point I haven’t a clue how people get from mutual attraction to becoming a couple and why on earth they would want to? What am I expected to do as a husband? I think I would also find it hard to understand that my girlfriend will have faults and that this is ok.
Making plans is hard for me, because my situation with regards to managing my anxiety, the demands of the workplace and the consequences of losing my support team if I do work means that working for a living could make me very vulnerable and there is currently no real support for people like me to access the workplace. But one thing is clear. I am in the best position of my life. I have my own flat with wonderful support, have little pressure and plenty of time to myself. I spend my time mostly at University and I speak all over the country about my autism and my dream of supporting those dedicated to improving the care system.
My life is wonderful and it is only just beginning. Sure I can’t tell you what I will be doing in the future, but I will be safe and whatever I do, it will be my choice, I have control. There is no reason why this shouldn’t be the case for others with autism. As I have lived for years with autism, I have learned to understand what works for me and what doesn’t. I want to build on my dreams to become a writer and a maybe a musician and I want to use my time to good effect to make this happen. The secret of living with autism is hanging in there when times are hard and in getting to know yourself. Only then can you make realistic life choices and only then can you achieve realistic and achievable goals.