38 years old and recently diagnosed aspergers

Hello, I'm 38 years old and was recently diagnosed with aspergers. I have seen the report from the psychiatrist that did the assessment. I'm unsure if I explained myself correctly because some of the report looks accurate, but some of it makes me seem more capable of than I am. For example it states I can manage daily living tasks if im not feeling depressed and that I like my belongings kept in there designated place and would be upset if they were moved. Plus routines would likely help me if they can be achieved. What is missing is the fact that I'm depressed or stressed most days and dont wash clean change clothes daily. Also I like my belongings kept in a certain order, but this is rarely achieved. ive moved house twice in 6 months and everything I own has been thrown all over the house. It's really messy to be honest. 


Liking a routine is questionable because I don't do much and dont know if I'd ever cope with a routine someone else set for me. I'm really isolated and have been for most of my life. I went to school until i was 14 but never had friends at school. When I was 6 years old I tried everything to avoid school. I want to know if I have PDA. Before reading about autism and requesting an assessment, I self diagnosed myself with avoidance personality disorder (or similar). I've always fought not to do things. Even when I want to do them. I would argue with my mum every time she asked me to get dressed, brush teeth, go to school. I've booked holidays but on the day made excuses and not gone. Ive suffered with 9 months of tooth pain because going to a dentist filled me with anxiety. I was hit by a car a 2 years ago and refused to get in the ambulance. That resulted in a huge blood clot, 4 months in bed, and ongoing pain. I'm also unsure if I'm going blind in my left eye. I had operations for squint aged 5 and this caused my a lot of trauma. Being highly eye contact avoidant makes the thought of going to an optician unbearable. 

I've applied for jobs but I've either not arrived to interview, or if I've gone, somehow been offered the job, I  haven't kept them long enough to make friends. I have one friend but don't meet him often (unless he's making phone calls or taking me to a meeting)

I hate waking up in the dark and feel tired a lot because something (usually noise) wakes me up 4 times a night. For a lot of years Ive woken up whenever I feel rested enough to wake up, followed that by watching repeats of porridge and only fools and horses, and then I have a go on a computer game, and sometimes look on the Internet. If I need to do more than that I have a meltdown or shutdown. I run out of meetings with (CAB advisors)to avoid screaming and shouting like a 2 year old would. Professionals such as those at the dwp don't like me ringing them because I lose my temper or tell them their job. I don't recognise they are professionals. In 2 months I've got to go to court to appeal their decision not to award me PIP. I'm not looking forward to that day. I hope I manage to attend and hope they don't stress me to the point I say or do something wrong. Getting to the court will be a big problem itself. I don't travel well. I get confused disorientated and lost. I've used one bus in the last 10 years and it goes from outside my house to outside my parents house. Even taking that 20 minute journey is stressful. I fear trying to go somewhere I don't know. Its the fault of the dwp that i've got to go to an place I don't know. They could have assessed me on paper or in my home, but because I told them I was on the verge of a shutdown and didn't care if they took my benefits and made me homeless, they made up a story about me not attending an assessment. I told the court that I didn't receive any letters or phone calls about an assessment so I can only wait to find out what happens now. 

If anyone can tell me what I could do to get some help to do more than watch TV alone all day, please do. Also I'm supposed to meet my assesor again in a month. Does anyone know why?? 

Thank you for any help or advice you can give me. 

  • Is this forum void of people? 

  • Hi ,

    I'm sorry to hear about the situation you are currently going through. 

    Firstly, the following link may be of help to you: http://www.autism.org.uk/about/benefits-care.aspx. It will take you to a part of the NAS website which discusses benefits, including a section on appeals.

    Additionally, the team at our Autism Helpline may be able to help you. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm), although please note that the Helpline is experiencing increasingly high demand, and you may not reach them straight away.

    Please see the following link for further information:


    Best wishes,


  • Hi Muddled, don't know your reasons for asking to leave again, but maybe try staying for a bit and see how it goes? Your post (the first one, I mean) wasn't really one that would usually not get much response, but there aren't that many people here, sometimes they have offline things to do, sometimes they get absorbed in another discussion and then have no time to look at new posts. There are quite a few people here that seem rather nice, maybe try giving them a chance, and yourself? That would be one way of not watching TV alone all day. It still means sitting in front of a screen, but it's less passive. And perhaps some conversation pops up where you feel like writing something too, that may also be worth giving a try. 

    Guess I can understand some of your anxieties to some point, I have them too, not quite that strongly though, but it sounds all rather logical really. Perhaps you can get someone who can accompany you to those appointments? I mean, a friend would be one option, but for one thing you don't have that many friends and it can also be quite difficult to ask them, so perhaps if someone does it as a job it's easier? Not sure what they can offer, but if you ring this number Nellie gave you perhaps they know what may be available? It's not easy to have to admit that this is what you need, but that may be another reason for hanging around here for a bit longer because you will see that others have similar issues. I find it quite reassuring to hear that I'm not the only one being "strange", perhaps you get the same?

    The thing with the optician is tricky, I find that too, but for most of the appointment I don't need to look at the optician's/ophthalmologist's eyes but rather at their ear or down or up or at a hot air balloon. Perhaps contact one and tell them about this problem so for one thing they know and can try to help you through the examination, but they will probably also be able to tell you in more detail how they do things so perhaps that makes you a little less anxious. Hope you find a way to go to those things and not escape to quickly either, they are important (well, guess you know that, at this fact is not making it easier...)

    You sound quite overwhelmed by what you call a mess at home. That's not an uncommon problem and there are people who can help with that, they need to understand autism though, because there's not point in them imposing what they think is tidy on you, you have to feel things are in the right place, but perhaps someone can help you to make a plan of what should go where and then to make that happen. Another thing that isn't easy to ask for, but they know that too and you are by far not the only one with that issue. 

    And do you have something you like to do? Going for a little potter somewhere maybe (even if it's just a bit up and down the road from the house to start with) or animals (maybe watching birds or animal shelters are usually happy about volunteers taking dogs for a walk or even cuddling cats), or doing some kind of handicraft or so or singing/playing an instrument or some kind of exercise? Doesn't really matter what you do, but perhaps try to decide for a time when you do one thing you like every day, always the same or something different, up to you, just try to do something active and don't watch telly during that time (and don't beat yourself up if watching telly is all you manage some days after all). And perhaps best don't try to force yourself to do things you think you should be doing but don't actually like because then you are much more likely to end up not doing anything and be disappointed about yourself instead of feeling better. Guess being depressed doesn't really help because it makes it hard to see things that you enjoy, but perhaps you remember something you did at least enjoy in the past? And the good thing is, if you do do it it usually still makes you feel better, even if you couldn't imagine this beforehand. Not sure, some people find it a lot easier to do things they find hard when they have told someone, I'm the opposite, I feel under so much pressure that it makes it even harder, I prefer to keep my plans to myself and then only disappoint myself if I don't stick to it - or be happy on my own about sticking to it. Which type do you think you are? 

    Hope you stay for a bit and get a couple of useful suggestions. You don't have to try everything, nobody here knows you so what works for others may not be your kind of things at all, but perhaps someone does suggest something that sounds like a good idea. Take care and maybe have another look tomorrow or in a couple of days?