Life through a lens of ... Aspergers

Life through a lens of ... Aspergers

Written by Anonymous

I was diagnosed with Asperger Syndrome in my early 40's, after a lifetime of always sensing that there was something very 'wrong' with me. That elusive something made me feel very abnormal, very different to other people and it set me apart from the rest of the human race. But neither I nor anybody else knew what that something was. I knew that I had never fitted in anywhere, and from the way other people reacted to me I knew that my differentness, my oddness was all too apparent to others It was not something I could hide, however much I might have wanted to. It was something I have always felt very self-conscious about and I didn't really want people to notice it. But it was just there for all to see.

Despite my social difficulties I married young, and by the time I received my diagnosis I was the mother of three already adult sons and one young son who was in primary school at that time. Soon after being diagnosed I was referred to the Hoffmann Foundation. Somebody from Hoffmann came to visit me at home and did a needs assessment where we discussed what kind of things I felt I needed support with. I had always found parenting extremely difficult, and the thing I have found hardest of all is keeping up with housework and maintaining the home in a reasonably habitable state. I found this so difficult that I had given up on even trying to keep on top of things because it seemed such an impossible task. I had let the mess, and the dirt, and the clutter take over until it felt as though there was so much mess it couldn't be cleared away and the dirt seemed so ingrained that it couldn't be cleaned. I was afraid that if I started trying to get the house in order it would absolutely overwhelm me because it was such a huge task. It felt as though I could clean forever more and I'd still never really make any headway with it. I didn't know how or where to start. And yet by not doing any housework, I was still letting it dominate my life in terms of the anxiety it caused me. The whole family was living in squalor and this caused some very nasty arguments between myself and my husband. I was constantly thinking about it and worrying about it. I didn't want anybody to visit because then they would see the state that our home was in and they would know how we were living. I especially dreaded anyone like family members turning up at the front door unannounced. I lived in fear of the consequences of my not doing any housework. I feared that there would be repercussions for me, especially as I had children who were living in this environment.

I'd tried to tidy around a bit before the woman from Hoffmann came, but she still wrote in her report that there was 'evidence of significant hoarding behaviour around the house'. Well that is part of who I am and that isn't realistically going to change. But I had developed a kind of phobia of housework and recognised that I had a real problem there. And so I said that was the area where I felt I most needed support. I learned about a technique called 'zoning' whereby you divide up the room, or flat, or wherever needs to be cleaned into smaller areas and focus on one area at a time. This is so that you're not overwhelmed by the enormity of the whole task. I was told that other people on the autistic spectrum had found this technique helpful in getting and keeping their living space in order.

It wasn't entirely comfortable for me letting somebody into the house and letting them see the state that we were living in, because I worry a lot about what other people think of me and I am afraid of how others might react to me. I have an avoidant-type personality and am painfully sensitive to anything that even hints at criticism. But my outreach support worker understood it wasn't that I was just lazy (which I'd often been accused of) or that I couldn't be bothered, but that things had just got on top of me and it hadn't been my choice to live that way. For the first year that we worked together we focused mainly on household tasks, working on one small area at a time until there was some overall improvement which would then be easier to maintain. This is something I shall always struggle with and this issue is not resolved for me, but I know that I can clean. It is something I can do, it is just hard for me to find the motivation and give myself the necessary push to get started when there are so many things I'd rather be doing. I also know that the thought of doing household chores is worse than actually getting on and doing them. I now feel it is something I need to work on alone on my own terms. There are times when I make more effort, and there are times when things seriously lapse. The fact of my living in a very full and busy household where I find it very difficult to assert myself, and where I feel in many ways that I don't have much control over my home environment, doesn't help me to feel motivated.

Something else my support worker did was to tell me that I should be entitled to a freedom pass. She came with me to the local service centre to enquire about applying for one, and I was given a freedom pass then and there. Neither of us had quite expected that, but at that time nobody else had told me I even might be entitled to one.

It was never the intention that we should do household cleaning in our sessions forever more. My support worker suggested that perhaps we could go to an adult education class together. And after we had spent almost a year focusing mainly on household tasks, we joined an art and craft class at a nearby community centre. It was a very small group and we seemed to be the only people in the building while the class was going on so it was very quiet there. I got to try a lot of different craft activities; some things that might be too messy to do at home, and some things that I just wouldn't have thought to try. My support worker came to that class with me for two years, and then I started to go there on my own. I carried on going for quite some time until the class changed in such a way that it was no longer appropriate for me.

After my support worker stopped going to the art and craft class with me, we joined a fashion jewellery making class, and then later we joined a silver jewellery making class which we still attend together. I didn't used to wear jewellery, but I thought it would be a really nice thing to learn how to make. I have felt for many years that the best chance I have of ever being able to earn any money for myself is to use what skills I have, and try to sell things I have made from home. And I thought if I ever got good enough at jewellery making, and once I knew where to buy the materials to make it, I may be able to sell my work. I found the basic fashion jewellery making techniques very difficult to learn at first, and I seemed to struggle more than the other people who had started at the same time as me. That might be because although I had chosen that course, I wasn't really 'into' jewellery at that time in the same way that others on the course might have been. I didn't wear jewellery at that time and I knew very little about it. It was only when I started to produce some quite nice pieces that I began to wear my own jewellery. It seemed to take me longer than it took other people to master the basic techniques and to complete projects. A short way into my first term I thought perhaps I should just give it up as a bad idea; either that or do what I did together with my support worker which was to go to the bead shop and buy some materials so that I could practise at home. It was when I started to practise at home that I really started to make progress, and that was also when I became more interested and I started to enjoy practising because I wasn't struggling so much. My progress in the silver jewellery making class has been slower because it isn't so easy to practise those techniques at home. It's rather like learning to write, when you first start to learn you're not going to have small, neat handwriting; that comes from many years of practise.

I did stick at jewellery making. One of my greatest strengths is that I don't give up on things just because they challenge me. I can be very persistent and rather stubborn and I don't see that as a bad thing at all. I don't think I have any great natural aptitude for jewellery making, in the beginning it seemed to come more easily to everybody else than it did to me. But I have developed a passion for it over the years and the more skilled I become the more I enjoy it. I progressed to advanced level in fashion jewellery making and I no longer feel the need to attend a fashion jewellery making class as I prefer to work on my own projects at home. A lot of the techniques that I use in my work I have self-taught off the internet. I didn't actually learn them in a class. I have had some opportunities to sell my work and now I need to look for some more selling opportunities. I'm never going to get rich from selling my jewellery. For the time being, the most I can hope for is to make a bit of 'pocket money'. People seem to like my work because it's unusual. Whenever I display my work people show a lot of interest and say lots of nice things about it, but perhaps it's a bit too unusual for them to want to buy it. I don't sell much – yet. Perhaps people need time to get used to something a bit different and I need to just display more.

I consider myself to be at intermediate level in silver jewellery making. I've still got a long way to go with that and I still have a lot to learn. If I found the fashion jewellery making techniques difficult to master at first, well silver jewellery making skills are a lot harder to learn. It isn't difficult to understand how to do the various techniques involved, and when the tutor demonstrates them she makes it all look easy. Then when you come to try it for yourself, you find that at first it is very difficult and requires a lot of practise.. I shall need to attend this class, or one similar to it, for some time to come. I especially like this class because it suits my different way of working. Everybody works on their own projects and everybody works at their own pace, so it really doesn't matter how long it takes me to finish a project. I'm not going to fall behind the rest of the class.

I have reached a point where I could now attend the jewellery making class by myself, so we shall soon be looking for a new class for my support worker to attend with me. I would like to learn embroidery, or perhaps macramé which would compliment the jewellery making skills I have already learned.

We also attended a short one-term course in basic make up skills. Before I did this course I didn't have a clue how to put make up on. I still don't usually wear make up, I've just got so used to not wearing it. But I know how to put it on now, so I have that choice. It might be quite nice to do a facials and skincare course to compliment the make up course.

Any social environment, whether the group is large or small, is going to be challenging for somebody like myself. Small groups can, in some ways, be just as socially challenging if not more so than large groups are. But in a craft group there is a focus on something other than social interaction and that is important for me; I can just get on with an activity. And in all of the classes I have been to, I have found that other people are interested in what I can do and in what I do achieve rather than in my lack of social competence.

Social isolation has often been one of the most difficult things for me to cope with. Some of the things that my support worker does with me are the sort of things a friend might normally do; from coming along with me to a make up class to, on occasions, coming with me to check out a drinking or eating establishment that I have a historical or architectural interest in. That is the only reason I would ever want to go into a pub. There are some places you definitely don't want to go to alone, and there are some places I just don't have the confidence to go to by myself. Even walking into some kinds of shops and public buildings can be nerve-racking for me if I am on my own, and social anxiety can hold me back from actually making it over the threshold. Just having somebody with me can make all the difference.

I may always need some kind of support, but my support needs change over time. Things that I might have welcomed even a year or so ago, I would not want now. I believe that support should always be empowering, that it should always be aimed at helping us towards greater confidence and independence and, ultimately, towards taking greater personal responsibility in whatever areas we struggle in. In my case, the main area where I have particular difficulty is with all things social. My personal understanding of what autism means for me is that I don't have an innate human-to-human connection with other people. And I suppose the way I tried to survive, especially as a child, and especially in school, was to withdraw as far inside myself as I could go. Even there I wasn't safe, because I was bullied by other children and was often in trouble with adults because of my extremely withdrawn social behaviour. My social withdrawal, coupled with a total lack of understanding of what was really causing my difficulties, meant that I have never gained the necessary self-confidence, nor have I practised and perfected the social skills necessary to really hold my own in society. As an adult I am quite socially phobic. Social avoidance and so-called selective mutism (I strongly disagree with the use of the word 'selective' here, but that's what the condition is called!) have become such a way of life for me, and they seem so much a part of who I am that it's difficult for me to improve things for myself. I do however know that I don't want to live like this for the rest of my life. Lacking an innate bond with other human beings doesn't mean that I am uninterested in other people. If I'm honest with myself I do desire human intimacy, and at times the loneliness has been hard to live with. I have come to the conclusion that I just need to find my own way, which will likely be a highly unconventional way and possibly with equally unconventional people. I think I am improving gradually over time. I have now come to the realisation that I do not want other people to speak for me. It is not dignified for me, it makes me seem more socially impaired than I need to be and in the long term it doesn't help me to learn to advocate for myself. And the time has come, I think, when I do need to either learn to advocate for myself or accept the consequences of not doing so, i.e. take some personal responsibility. It's hard because as with learning any new skill, I'm afraid that it will involve making social mistakes that would be more forgiveable in a child or in an adolescent rather than in a middle aged person. I feel that my lack of social experience disables me at least as much if not more so than Asperger Syndrome does.

One thing that no support service can do is to fix all of our problems for us. But what I think the Hoffmann outreach service can do is to just open up our world for us a bit and help us to improve some things in our lives. This needs to be a very gradual process, and some issues are harder to address than others. Through working with my support worker I have been to places I wouldn't otherwise have gone and met people I wouldn't otherwise have met. I have learned new skills that might realistically enable me to earn some money for myself. and I have done things I just wouldn't have thought to do on my own.

- Anonymous

1 Reply

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  • Just keep focusing on all the great achievements that you have made so far, more than most. Certainly more than me, I can talk the talk and fortunately am a confident person (mostly acting mind) but have I taken even half of the classes I'm always saying I will join?, of course not.

    Just a suggestion but most infant schools are crying out for people to sit with the children, usually one to one, and read with them. It is an empowering thing to do, knowing that you are making a huge difference to that child's future. Also children are the best critiques, they are honest in their opinions, they tend not to harbour bad feelings and very quickly forget what has gone and move forward, they don't, as a rule, harbour ill-will and, most importantly, they say what they mean, there's no hidden agenda and any self analysis of what you say is wasted for little children don't think that way, and sometimes for no reason, they'll give you a big smile or even a hug.

    I think that you are a brave person, you have given yourself challenges and have succeeded in surpassing them. In the written world, your experiences may make a huge difference in someone else's life. Maybe creative writing could be a way to go, you certainly have the ability.

    I wish you well and thank you for such an honest insight into how Asperger Syndrome has affected you and how you are dealing with it.

    Rosie-in-the-garden.

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