Deblegs

Hi Rachel I do remember you. What are you doing these days? I don't know whether I told you, but my Mum died just over 2 and a half years ago. It hasn't been easy, but I am managing to cope. I live with Dad still. I now do the shopping and the cooking, the washing and the ironing. I have a really nice Support Worker who assisted me in choosing my car. I also have good network of supportive friends at the church that I go to. I go to a different church now. Nice to hear from you. From Debbie

Dear All My search for a car has been a success. I have bought a Nissan Micra. It is a 2000 model. It is six years old. I haven't got it yet. I would think that I will get it next week. Next time I have to change my car, I feel that I would have to confidence to go and visit car garages on my own now. I will just need assistance with deciding which one to buy. Melissa (Support Worker), along with my Social Story has enabled me to do this. From Debbie

I am also receiving this benefit. I too think that it is right that the goverment should do this to find those who are abusing the system, but it should understand that there are genuine people who cannot cope with going out to work. There are alot of people with Autism/Asperger Syndrome that cannot cope with pressure and stress and need their routines. You can't always routine a job. I am going to be talking to the NAS press office. They are always looking for case studies they can use. If any of you feel that you could talk to the media about this issue, then do so. From Debbie Hudson

I am a committed Christian and I know that as God forgave of my wrong doing, I should forgive people who have wronged me. I do this. Love is the basis of forgiveness. God, the Holy spirit lives inside me and he gives me the ability to forgive. I cannot do this without him. Human love is conditional, but the love of God is unconditional. When someone upsets me or wrongs me I pray for that person. This softens my heart for them and prevents me form bearing a grudge. From Debbie Hudson

If I did not have a support worker I would not be abe to cope with going out and buying a car. A diagnosis would be useful because it is a passprt to gain access to services. From Debbie Hudson

On Friday morning I went out with my Support Worker. along with my typed up Social story, to look at a few cars. We went to 3 garages. My Social Story helped me to ask the relevent questions. I saw one car that I liked and am going back to one of the garages again to look at a few more. If it wasn't for my Social Story I would not have coped. If I have too much to think about I suffer from information overload. From Debbie

Dear All I had my first session with Melissa, who will be one of my support worker's. The session went very well and I felt very positive about it. We spent a while talking and also I asked if she was able to give me some assistance in getting another car. She said that she would. Next week we are going to do some risk assessments. These have to be done. It is for them to know what situations I would be very vulnerable in, so that I don't get into the situations. eg. If I was to be in a place that I did not know, I would be very vulnerable. We are also going to do some support planning. We are also going to do a Social story for buying a car. For the car we will write down how to go about buying a car and what questions to aslk and how to avoid getting ripped off. Then when I have to buy another car, I can refer to the social story for help. I may not need a support worker the next time. I also mentioned the leaving home issue as Dad had said that he would possibly like to see me settled. She was really on the ball. I told her that I did not feel that I would ever be able to hold down a paid job. Actually there are very few people with AS that can hold down a job. Melissa said that you can't routine a job and jobs get stressful and pressured. She was very accepting of this. From Debbie Hudson

Whenever I look at people when I am talking to them I look at the nose and the mouth. I find that looking a their eyes is too much for me. From Debbie Hudson

Thank you Nellie for the encouragement. From Debbie

Dear All I heard on the news that the goverment is planning to take a million people off Incapacity benefit and get them into work. This is a concern of my local Autistic Society and the National Autistic Society. I am on this benefit but I am not going to worry about it as worrydoesn't change anything. From Debbie Hudson

Dear All I have had an email from Nellie to wish me Happy New Year. Thank you for your concern about not hearing from me in a while. I have been quite busy on the computer. I am earning a bit of money doing online surveys. I am also doing some internet research for a disability organisation. I am also in the middle of an internet project about the benefits of online communication for those with Asperger Syndrome. I did not have a particularly good Christmas as I was not well and still am not well. Where I went there were too many people and they just sat talking most of the time which I find difficult. I am thankful that I have my craft work to do. I find it easier if I am doing an activity with people rather than just talking. I have had to cease using ******* (name removed by moderator) as they did not meet my requirements. I am now using ****** (name removed by moderator) which is a service for those with Autistic Spectrum Disorders. My new Support Worker starts on Friday and I am really looking forward to it. They are going to do a Person Centred Planning with me and Social stories to reduce my anxiety. I will try and come on a bit more often. Happy New Year From Debbie Hudson

I am in the middle of having Brace Therapy treatment. My problems started with a wisdon tooth that was heavily impacted and as it errupted, it dislocated my jaw and it moved my teeth out of position. I had to have it out. I also waa grinding my teeth away and the dentsit said that if I didn't have anything done I would lose all my teeth. I then had to have 6 teeth crowned. I was then advised to have fixed brace therapy as it would result in me not grinding my teeth as much. My Brace therapy is going well. At first it took a lot of getting ussed to and I had some mouth alcers but it hardly bothers me now. My Dentist is really good with me. When my Mum was alive she told him about my Autistic Spectrum Disorder. I read somewhere that people with Autism/Asperger Syndrome have a tendancy to grind their teeth. From Debbie

I am not in paid employment simply because I cannot cope with working and doing the domestic chores as well. Also I am not in paid work because I cannot cope with working under pressure. Also I don't want to be bullied again. My parents went away for 7 weeks once. It was the first time I had been on my own without them for that length of time. At that time I had a voluntary job for 2 and a half days a week at a disability organisation. I was also doing the domestic chores like washing and ironing, shopping and cooking, and a bit od cleaning. The first two weeks seemed ok but when they rang me up I was in a bad way. I had become anxious as well as tired. I was told to forget the house. This was a good test for me as it made me realise that I couldn't cope with a job and doing the domestic chores. The job was only part time as well. When my Mum died, I took over the domestic duties. I now do the shopping and cooking, washing and ironing and a bit of cleaning. I also do voluntary computer work for the other part of the mornings. I work at the church for a morning each week. I could not combine all this with a job as well. From Debbie Hudson

Dear All I have a problem with receiving advice and being given different opinions. This is because I find it difficult to process this type of information that is outside of myself. It makes me upset and anxious. I can only cope with doing things in my own way and in my own time. Hope this helps. From Debbie Hudson

Dear All My Social Worker was very helpful to me. She did say that I probably would lose some of the direct payment but not all of it. She said that she would have a word with them and argue on my behalf to say that I need a flexible package. First of all though, I am waiting to see if the service I was using is able to meet my conditions. I have had to lay the law down as I just got fed up of being messed around. If the service agree then my Social Worker will ask Direct Payments if they will give me a flexible package. If they do I will continue to use the service provider. From Debbie

Dear All I have had to stop using Ruach Care Services. I was told by the man who runs the company that if I didn't use the Direct Payment money that has been given to me to buy services from Ruach Care, I would lose it. This is because I only require support as and when. The Direct Payment Scheme is not flexible enough for people like me. I did at first decide to give it a go for 2 months, but changed my mind. I have gone through several months of not needing any support. Because of my difficulties with social interaction, I would be very unlikely to seek human support when I am anxious, because I would not be able to say what support I would need. People like me who can do a lot for themselves, only need support as and when. Unfortunately, there are no services that can provide this type of support. The Direct Payment Scheme is fixed and it is based on fixed hours of help. I was given 4 hours a week, but I do not need fixed hours of help or visits. I have emailed, my MP, the NAS Helpline and the NAS Policy Network Campaigner to highlight this. I feel that I would like to see something provided for people like me who only need support on call. I don't see why something can't be done. It is something that will have to be looked into though. Maybe oncall centres could be established. Doctors have to go on call and so do some workers. From Debbie Hudson

Dear All I understand how you all feel. It isn't nice being rejected. I have been rejected by people in the world and Christians. It can't be easy being rejected because you have a child with an ASD. It is not you that has the problem. It is other people. My Mum said to me to be true to myself. She also said that if I don't have a friend, it is not my fault. However I do have a small circle of friends who accept me as I am. I go to a very nice traditional church and we are inclusive of people with disabilities and people who are different. Mind you we are all different. God's love is unconditional and he loves and accepts everyone. Human love is conditional. My friends express the love of God towards me. I may be set in my ways, and have narrow choices etc, but it doesn't harm anyone. There are a lot of positive traits of Asperger Syndrome and people need to see these and not major too much on the negative traits. None of us are perfect in this world. From Debbie

Dear All I am on a low dose of Amytriptyline. I take 1 50mg tablet each night. I am also on a low dose of Pyroxetine Hydrochloride. I take one a day. I have had some other difficuties as well. I have heard that people with AS who take antidepressents say they are very helpful. They have helped me too. From Debbie

Dear All I am still in the middle of setting up the direct payment. I have received a cheque which will then go into my bank account when this account has been set up. I have a support worker who works for a company who provides support in the parental home and provides housing for those who have Asperger Syndrome. I will have to pay her a lump sum as she started a while ago. Would I be able to employ someone else that is not involved with the company?. I have a cleaner tha tis not officially employed. Would I be able to set her on and pay her with my direct payment money. I do not need my support worker for a lot of hours. Look forward to hearing feedback from you all. From Debbie Hudson

Dear Carol I am just in the process of starting to use Direct Payment. I am just waiting for a disability organisation to come and help me set it up. I like the sound of it. From Debbie

My name is Debbie Hudson and live in the UK. I am 40 years old. I was diagnosed with Asperger Syndrome when I was 35 I was born with the umbilical cord around my neck which resulted in me being blue all over. For a fortnight my finger and toe nails were blue. Mum thought that I should have been given oxygen at birth.