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38 years old 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 think she half gave up by the time I turned 6. I was quiet but bossy when I went to school. I'd get back to parents and explode though.

    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 can scream shout and act up if I feel hurried out the door by him. If he suggests going to do something I will resist even when it sounds fun. Ive often said, in a minute, maybe tomorrow.



    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.



  • It does sound like you have PDA. But at least you have an Asperger's diagnosis because both are ASDs and it will allow you reasonable adjustments according to the Equality Act.

    You can request not to attend an appeal and have it decided on written evidence. I have Asperger's and I once appealed without realising I had (don't ask!) and I really couldn't face going so I faxed them and they allowed it to be done on papers and I still was successful at the appeal.

    If you do end up going, in law you can ask for reasonable adjustments. There are certain documents applicable to court staff including judges which are applicable for an appeal because it's still a court scenario:

    (You can email this to the the court clerk or whoever the relevant person is) https://www.judiciary.gov.uk/publications/equal-treatment-bench-book/

    http://www.theadvocatesgateway.org/toolkits (look down the right-hand side for specific documents as there are ones related to autism and various applicable ones)
  • Did you send a copy of your diagnostic report to the DWP for evidence?
  • If not, write a covering letter attaching a copy explaining your records need updating as you have a new diagnosis. It's really important that you provide it in evidence for your court hearing.
  • There are some parents of adults with PDA posting on here, they might pop on with some suggestions for you. But you could do worse than looking for a local ASD support group to make some friends with. The NAS website has a search facility and may have details of one near you.

    For your sleep issues it may be that you need melatonin, which you GP can prescribe. If you can't face seeing the GP, you can order it from abroad but make sure you choose a reputable website to order it from.

    There are some special care dentists for people with dental phobia or high anxiety, you could look up what's available locally. You can also ask someone to go with you for moral support. Clearly it's affecting your healthcare severely to be avoiding medical appointments. Now you have your diagnosis, you could contact the council's adult social care and get a social worker. They should be able to do some things to help you, they might support you socially with someone to accompany you places to try activities, support for health care appointments, writing letters in support of your difficulties etc.
  • Holly59
    Posts: 1,988
    Hi Welcome to the Forum,

    Agree with everything that's been said so far . There are lots of people who can help with reports etc to the DWP .

    http://www.autisminitiatives.org/

    Look up your nearest branch and they have specialist workers who can come and see you wherever you feel comfortable at . They will help collate with others support you need .

    There are specialist dentists . My dentist now has learned about PDA and has been brilliant like my GP.

    There is an adult FB page for PDA , chatting to others like your first post on here will give you answers and coping Stratagies .

    Sleep is a common issue in ASD . Perhaps watching the Webinars will help and the different blogs .

    Good Luck .

    Pat xx
  • Thank you both for taking the time to reply me. I'll have a look at the links you have provided and hopefully find some support. Being alone all day nearly every day doe's start to get boring and stressful after a couple of years. Thinking about making changes is difficult though. I only had the assessment last week so I haven't managed to do anything except think what now. I don't even have report to send to the dwp yet. The assesor emailed a draft copy incase she left anything out, and when I get the full report it'll get a copy sent to the appeal court. PDA_ASD_parent, I'm curious to know how you managed to apply for pip without knowing it, but I'm happy to know you won appeal whatever happened.

    I'm also curious to know if anyone can think of a reason why the autism assesor wants me to travel to meet her next month? She has arranged to meet me away from the assessment centre, and this is nearer to my house, but it feels like a demand not a request (if there's a difference) and I'm already making excuses not to go. Do you think she want to give me report at the meeting, or is she testing my ability to travel?

    Thanks again,
    Martin

  • Holly59
    Posts: 1,988

    Muddled1 said:

    Thank you both for taking the time to reply me. I'll have a look at the links you have provided and hopefully find some support. Being alone all day nearly every day doe's start to get boring and stressful after a couple of years. Thinking about making changes is difficult though. I only had the assessment last week so I haven't managed to do anything except think what now. I don't even have report to send to the dwp yet. The assesor emailed a draft copy incase she left anything out, and when I get the full report it'll get a copy sent to the appeal court. PDA_ASD_parent, I'm curious to know how you managed to apply for pip without knowing it, but I'm happy to know you won appeal whatever happened.

    I'm also curious to know if anyone can think of a reason why the autism assesor wants me to travel to meet her next month? She has arranged to meet me away from the assessment centre, and this is nearer to my house, but it feels like a demand not a request (if there's a difference) and I'm already making excuses not to go. Do you think she want to give me report at the meeting, or is she testing my ability to travel?

    Thanks again,
    Martin



    Hi Martin,
    You do not need a diagnosis to apply for PIP BUT you need specialist help with the paperwork . Don't even think of attempting it on your own .

    The LA will also have specialists to help .

    https://www.scotborders.gov.uk/info/20075/help_applying_for_benefits/301/how_can_the_welfare_benefits_service_help

    I live in the Scottish Borders , using this as an example .

    That's where the Autism Iniative or a specialist ycome into their own .
    The other suggestion is an assesment of your needs by Carers UK .

    http://www.carersuk.org/

    No idea as to your question . If you find the journey too much of a challenge tell her . Get them to come to you . That way you are in control .

    You will learn Stratagies how to cope in the future . Coming on this Forum is pretty amazing . Well done you .

    https://www.pdasociety.org.uk/resources/blogsandfacebookgroups


    Set yourself ONE goal a day . It everything else goes wrong so what . Look at the Positives and build on that .

    Pat xx
  • Well I wrote a letter providing new medical information for my existing claim and then out of the blue I received a pack telling me I had made an appeal and there was going to be a hearing. I hadn't written anything about appealing in my letter and it was a shock to receive it. All I could surmise was that it was a timing thing, maybe the time I sent the information was within a certain timescale of my award and they made an assumption. I also have a really annoying thing where I miss blocks of text in letters and it can cause embarrassing misunderstandings, so it's possible I misunderstood their award letter too. DWP letters are horribly long and confusing.

    I don't think the assessor is trying to make your life difficult, unless you tell them you have difficulty travelling and that it's variable on different days, they will assume if you have travelled before, you can do it again. Can you email them and tell them and explain you are struggling with it? What about applying for patient transport (look on your CCG or Trust website)? Also, it's brilliant you have a draft report. Why not write/email the clinician asking if it's possible to include mention of your demand avoidant profile? That would be at least part of the way to showing you have PDA. If you want to go for a PDA assessment you could go privately if you can afford it. Help 4 Psychology in Norwich are good. It might also be a good idea to tell yourself that you applied for DLA and you decided to go for ASD assessment so it's not a demand on you, you are in control of it and are not being demanded anything by the associated processes to do with it. It might help you see it differently.
  • Thanks again to both of you for your advice. It's interesting to hear you were awarded pip without a massive fight.

    I've emailed the assesor and asked her to rearrange the appointment to a date my friend is available to travel with me. Hopefully she can make some adjustments. She was a very nice lady but I think I just need to feel in control of the situation. It's always a case of my way or the highway. Reading some of the problems parents of children with PDA resonates with me. I wish I could advise on how to deal with the issues they face. I know threats to take my few hobbies away never worked when my parents tried those tactics. I felt punished for something I didn't feel I had control over. I remember feeling better when asked what I'd rather be doing than going to school etc. With a bit of trickery my parents were able to convince me my ideas were boring and I'd end up in school. I hated the place. Too loud. Too many people. Too many corridors. Too many expectations. I was extremely quite at primary school but very aggressive at home. Being bullied from a young age didn't help and by the time I reached secondary school I was out of control. I ended up leaving school aged 14. I didn't sit a single exam, started smoking weed, became reclusive. Smoking weed didn't do me any harm as such, however it's use was a way of masking my problems. Plus teenage weed smoking associates were undemanding and interested in little more than getting high. It made finding some commonalities easy. Those associations ended after a number of years. After becoming bored with the same old nonsense chat about weed. After having my honest nature abused by greedy addicts.

    I must have gained some self control in later life or found a way to feel less pressured without weed though. If anything happens now I am more likely to shut down than meltdown. I think the scars from years of self harm are unsightly and locking myself away is ultimately less damaging.

    The assesor is aware I don't travel well and there are lots of notes in the draft about me getting lost in school corridors and about isolating myself. She also noted I'm pleasant to talk to if im not stressed. I guess for her to say that means at some point in our 4 hours together I had a moody moment. (Lol) Before attending I actually thought my behaviour was so odd that I'd get sectioned. Luckily she said we're all different and if it's legal and your not a danger to yourself and others then it's okay.


    .


  • Holly59
    Posts: 1,988

    Muddled1 said:

    Thanks again to both of you for your advice. It's interesting to hear you were awarded pip without a massive fight.

    I've emailed the assesor and asked her to rearrange the appointment to a date my friend is available to travel with me. Hopefully she can make some adjustments. She was a very nice lady but I think I just need to feel in control of the situation. It's always a case of my way or the highway. Reading some of the problems parents of children with PDA resonates with me. I wish I could advise on how to deal with the issues they face. I know threats to take my few hobbies away never worked when my parents tried those tactics. I felt punished for something I didn't feel I had control over. I remember feeling better when asked what I'd rather be doing than going to school etc. With a bit of trickery my parents were able to convince me my ideas were boring and I'd end up in school. I hated the place. Too loud. Too many people. Too many corridors. Too many expectations. I was extremely quite at primary school but very aggressive at home. Being bullied from a young age didn't help and by the time I reached secondary school I was out of control. I ended up leaving school aged 14. I didn't sit a single exam, started smoking weed, became reclusive. Smoking weed didn't do me any harm as such, however it's use was a way of masking my problems. Plus teenage weed smoking associates were undemanding and interested in little more than getting high. It made finding some commonalities easy. Those associations ended after a number of years. After becoming bored with the same old nonsense chat about weed. After having my honest nature abused by greedy addicts.

    I must have gained some self control in later life or found a way to feel less pressured without weed though. If anything happens now I am more likely to shut down than meltdown. I think the scars from years of self harm are unsightly and locking myself away is ultimately less damaging.

    The assesor is aware I don't travel well and there are lots of notes in the draft about me getting lost in school corridors and about isolating myself. She also noted I'm pleasant to talk to if im not stressed. I guess for her to say that means at some point in our 4 hours together I had a moody moment. (Lol) Before attending I actually thought my behaviour was so odd that I'd get sectioned. Luckily she said we're all different and if it's legal and your not a danger to yourself and others then it's okay.


    .




    Hi,
    It's so sad so many obvious traits of Autism Spectrum were not spotted . I can really understand your frustration. It was me a parent who first spotted Aspergers in my boys at 17 and 18 . So many missed opportunities by so called professionals . I still don't have a formal diagnosis of ASD-.PDA .
    Just as a matter of interest have you ever looked into the Co - Morbid issues like Dyslexia , Dyspraxia , dyscalculia , lots of others . These are often missed . That's what gave me my first clue . Look at the bigger picture .
    My eldest son was bullied throughout school. We now know why .
    PIP has been a rollercoaster for us . I am on the highest award for both. Since the boys were tested I thought " I do that " . Turns out I have Dyslexia , Dyspraxia , dyscalculia , Irlen Syndrome , ADD , possibility of MS . The list keeps growing .
    Like you I struggled at school. Nothing was easy but somehow I managed to pass my O and A levels . Maths made no sense whatsoever , my proudest achievement was a CSE grade 4 in Maths .
    My youngest son has the higher rate for care and basic mobility , my elder son has basic rate for both . Totally wrong , he should be on the highest .
    I also found it depends on the assessor and assesment centre . One assesment took 17 minutes and the guy was clueless .
    Your assessor seems as though she is a work I progress collating all the relevant information . DWP have PDA as an accepted issue but you may have to refer her to the Professional link on this site for further information .
    My children hated school as well . It was the happiest day of their lives when they left . Huge smiles .

    You may have seen myself and another lady are Petitioning the Scottish Parliament at present . Shall we say it's a challenging experience . Our response to the Governments last submission should be online soon. The awareness is definatly growing . Getting support is a major issue . Very much a Post Code Lottery .

    http://www.parliament.scot/GettingInvolved/Petitions/PE01625

    The biggest surprise for me the other day was finding out how many Adults were now finding out about PDA, that lightbulb moment , and adults were overtaking parents in seeking advice from the PDA advice line . The Adult section is excellent .

    It's fantastic that adults are doing blogs and talking about their issues . For me it's so much easier to relate to my children's issues .

    May be in the future you might consider doing a case History for the PDA Society . These are extremly helpful for others researching the issues .

    I hope one day you get your formal diagnosis . Ours is work in progress .

    Do keep in touch and let us know how things progress .

    Pat xx




  • Hi, it's been a long night/day (No sleep) so I'll keep this fairly short. There's been a lot to think about for a couple of months (or years ) and it becomes draining being unable to switch off. Any small sound wakes me. It's a nightmare. I get information off the Internet, and advice from various sources, but I rarely know how to put it to use immediately. Some people seem to get the impression I'm intelligent. And perhaps in some ways I am. But in other ways I'm slow on the uptake.

    Sound light and my brain keep me awake when I have to figure out what I'm supposed to do. I'm still trying to work out what to do with the links in your earlier posts. I'm sure there's help in there some place, and when I find it I'll probably not use it, or I'll need help using it. It took years to "work out" how to claim benefits and keep a roof over my head. It wasnt that long back I learnt about dla/pip. Any changes to the benefit claim processes will literally cause a headache. I'm not sure if I have any other health conditions, but that's a lot you have to deal with. How do you cope? I'd probably just stay in bed day and night if I had to contend with all that.

    I've never been one for researching mental health issues and disability in detail. That may change now. I still feel uneducated about autism, and I'd never heard of dysplasia before you told me about it in your last post. Seems autism and dysplasia may share some commonalities though.

    Good night (:

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