New to site - carer of partner with Aspergers & ADHD

Hmm, well, the meeting could have gone better, but it wasn't as bad as it might have been. Our GP is now going to refer JJ to a local Psychiatrist, but there is apparently a long waiting list. Once he eventually sees the psychiatrist, it will take him a long time to actually trust them and speak to them frankly about his difficulties. I read that many people with Asperger's have the problem that they are too trusting of other people. JJ is completely the opposite, he is so afraid of being taken advantage off that he doesn't trust people at all. (For those of you now wondering how on earth we ever started a relationship, we'd known each other over the internet for eighteen months before we finally met in real life).

However, one thing that concerns me about the meeting with the GP is that he seemed very interested in JJ's ability to work, and said to me that I don't seem the sort of person happy to live on benefits. I'm not, I had a good job for ten years (I'm older than JJ, I'm 33) and was made redundant last year before JJ moved in with me, but how can I carry on looking for a new job when JJ needs a carer and there's no one else to do it? (His family live about 180 miles away).

I'm wondering if the new government has already been leaning on GPs about getting people off benefits and back into work. Considering I'd provided our GP with an eight page document detailing how difficult our day to day lives are and how much care and attention JJ needs throughout the day, I can't believe he could even contemplate someone with JJ's issues being able to even get a job, let alone keep it. He's tried hard enough in the past and used to be signed up with an agency that was supposed to help disabled people gain employment, but most of the jobs they pushed him to apply for were totally inappropriate for someone with his issues. Let's face it, it's hard enough for "normal" people to get jobs in this economic climate, let alone someone who cannot express themselves and communicate clearly in an interview. Furthermore, JJ is paranoid around people he doesn't know/like, has screaming panic attacks when he feels overwhelmed or threatened or is startled by a loud noise, and has a tendancy to self harm. If by some miracle he got a job, I don't think he'd even keep it for a week.

JJ ended up having a panic attack in front of the GP when he was pressed to talk about how his Asperger's affects his life. I started to say how difficult it is for him to explain that when it's all the life he's ever known, but the GP shushed me, so I just thought "Okay, you asked for it" and sat quietly whilst JJ got into a hell of state trying to express himself. I guess that sounds terrible, but I figured if the GP actually saw how easily JJ can work himself into a frenzy of panic, it might actually help our cause. Anyway, we got the GP to agree to a referal to a new psychiatrist, which is a start. He was unwilling to get drawn into any futher contact with the DWP, so I seem to be left on my own with that problem. Oh joy...

On that front, I telephoned them to ask for a reconsideration of their decision as we're running out of time. I really was not impressed with the staff member I spoke to. When I said I was not happy about how they had consider the claim and mentioned about them not asking JJ's previous psychiatrist for a psychiatric report, her response was, literally "We don't have to do that, it's not our job." I was speechless (luckily for her). So they can ask our GP for a general medical report, but they can't be bothered to write one more letter? Seriously, I used to be a complaints investigator in the finance industry, and if I'd done a half-arsed job like that my boss would have had my guts for garters, and rightly so.

Anyway, sorry for the rant... oh yes, you asked about herbal stuff, Josie. My mother suggested that... I got something that I thought would help, and he won't take it - comes back to the distrust of medication again. He won't touch anything that he thinks might mess with his mind.

Bek

Well... JJ had to go to a DWP appeal tribunal over his incapacity benefit a while back (18 months - 2 years ago I think) and they decided then that he has a lifelong condition that wasn't likely to improve and they pay him his incapacity without the need for sick notes or anything. Is that what you mean as classed as unemployable?

Just remembered, you asked if his fainting fits were linked to his panic attacks. I don't think so. He can have the fainting fits when he's panicking, but most of them seem to happen when he isn't. The pattern that I have noticed is that the fainting fits seem to happen when he's been still for a while and then starts moving around, such as when he gets out of bed. I originally thought maybe it was caused by low blood pressure, but it turned out that although his blood pressure is lower than normal, it's not low enough to be the reason behind the faints.

I have no idea if we have any kind of autism support locally. I doubt it, as I'm sure the GP would have mentioned it. I've been on the NAS website to get one of those cards explaining about autism for JJ to keep in his wallet. He had a major screaming and headbeating meltdown one night and I was expecting next door to call the police, he was making so much noise. It's not the first time I've worried that his panick attacks might lead to him being arrested, so I thought one of the cards would be a good idea just in case. I'll check back on their website and see what I can find.

Thanks for all the help and advice, it's great to have someone I can talk to about all this.

Bek

We are located in Northwich, Cheshire. Do you think it would help if we dug out the papers about the outcome of his incapacity benefit hearing and sent them a copy of those? Or would it result in them trying yet again to take even that off him? I have written an eight page document about what our lives are like and all the things I need to help him with, as well as what I put on the DLD form, and judging from their decision letter it looks as though they didn't even read it.

His mother looked after him before he moved in with me, I've already asked her to write about her experiences caring for him so that we can send that in with for them to do the reconsideration. I am desperate to avoid putting JJ through the stress and trauma of the appeal tribunal, but it's starting to look as though it will be unavoidable. We now also have the hassle of them having turned down the request for backdated income support, we asked gor

I rang the NAS helpline earlier today and they suggested the social services assessment. I don't know if I can get him to agree to it or not yet, he was very agitated when one of the early letters from the DWP said they might make a home visit and when I said I was going to request a home visit during their reconsideration process so they can see what he can be like, he became very distressed. He's very territoral about the house, I invited the Avon lady in last week because it was raining when she called, and he didn't look very happy about that. She's lovely though, I think the only reason she calls is she knows I barely get out since JJ moved in and she comes for a chat, becuase I never buy anything these days, money is too tight now.

On that subject, really starting to get scared we're going to lose the house if the DWP don't sort things out soon. I own it subject to mortgage and the unemployment cover on my mortgage runs out this month. We're trying to live solely on JJ's incapacity benefit and we can't afford to eat and pay all the other bills, let alone the mortgage. They haven't even started paying out on the income support claim we've had to make, all we've heard on that front is a letter refusing to backdate it. (JJ was given the run around about it for weeks and couldn't cope, and it ended up with me having to step in and insist that they dealt with me, but they are refusing to take that into account). The really funny thing (well, it's not funny, but you reach the point where you'd have to laugh or you'd cry) is that they enclosed a sheet of circumstances for appeal against the decision not to back date the claim, and one of those is "The claimant has difficuiting communicating" - and they knew DAMN WELL he has Aspergers because we had to declare why he was unfit to work. How stupid are they, really?

I was really happy when JJ and I became a couple, but now I feel as though my entire life has become a battleground and I am in utter despair. I'm about to lose my car because it's going to fail its MOT and I cannot afford to have it repaired, and even our home is at risk. I've been told we can possibly claim the interest payments for the mortgage from the DWP (but they won't help with the capital repayments), with their current track record of dealing with us, how long is it going to take them to start paying even that, and how hard are we going to have to fight for it? I wish I could have some brilliant idea of a small business I could do from home that would make enough for us to live on, but I've been racking my brains over that for months and I can't think of anything at all.

Bek