What do I do about my DH. Advice please

[Chickpeas]

Hi there,
We have been married for 14 years and have one DS who is 8.

Both my DH and DS have Aspergers Syndrome (which is an Autistic Spectrum Disorder).

My son needs a lot of help as he is quite seriously affected by his Autism. My husband is High functioning but has problems with social interaction and needs guidance to carry out routine tasks.

My hubby used to be a 'workoholic'. He loved his job and was on very good money as a systems analyst. He had a breakdown over 2 years ago due to not coping with being seconded to another department at work where he was picked on for being 'different'. He got seriously depressed and The GP sent him for every type of counselling, therapy, tests and medication available apart from electroshock, which they considered. Nothing worked an His company refused to make reasonable adjustments for his disability, despite saying they would and laid him off on grounds of incompetence after his sick pay ran out. There was no recourse and he didn't want to go back there after all the hassle.
He tried to go back to work for a different company but was laid off again after only 5 months because of his 'weird ways'.
That was over a year ago and since then he just plays computer games all day or lays in bed. I try to get him to do stuff around the house but if I don't write explicit description of the job he can't do it. He cannot lok after our son. I left them alone for 2 hours and my son had a bad accident that nearly broke his jaw and knocked his teeth loose because DH was playing on the computer and not supervising.

He is bored with everything, doesn't do a thing unless prodded and cajoled and doesn't look for work. Can't cook, clean, wash, or childmind and won't get a job. The GP says he is no longer depressed, and can't do anything to help.

I am at college at the moment as I realised he wasn't going to get another job by his attitude last year so I went back to college on a years course to update my skills so I could work again.

Since I am at college and have to cook,clean, wash, childmind and husbandmind well it is getting on top of me. We are on little benefit now. I tried to apply for DLA for DH as he really does need as much care as a child, but it was turned down. He can't even go shopping as he gets confused and doesn't know what to buy. If the usual bread is not available he panics and buys none.
He shouts and rant about our sons autistic behaviour, is grumpy and angry all the time and barely speaks to us.

I am trying to run my own business, go to college and do all the other chores mums do as well as looking after our son, who is very dependent on me.

What do I do? Help. My husband is just sucking up any money I make at my fledgling company and doesn't contribute anything at all.

Oh god, sounds so hard for you.
I really have no advice/experience but have seen Asperger's Syndrome Foundation this site before, maybe they can help?
It does sound an awful lot for one person to cope with and I think you must try and get some help from somewhere or you will make yourself ill. So no advice, but lots of sympathy.

I may be missing something but what are you getting from this relationship? I understand that your husband has special needs but if he is not contributing to the family in any positive way and making you all miserable, surely you would be better off apart?
This all sounds too much for one person to cope with and I worry about the impact it is having on your son.

you can ask SS for a carers assessment on the basis of your son's needs but also your SHs - if he has been diagnosed and even if not getting DLA, it will be taken into account.

is there anyone else your H can go stay with for short times eg a weekend? to give you a breather?

is he really incapable or just playing it up?

is he still gettting therapy/treatment?

"He is bored with everything, doesn't do a thing unless prodded and cajoled and doesn't look for work. Can't cook, clean, wash, or childmind and won't get a job."

clealry he COULD do this before - can he really not do it now? or does not want to?

i think you need to get tough with your H - but speak to ASf for advice.

go to GP yourself and get a course of counselling - help you to think up strategies...

You need to get an advocate, a social services benefits officer/welfare rights officer.

They will help you apply for DLA again and appeal it on your behalf. They are very very good at what they do and will help you.

Your DH should be getting DLA and it is wrong it was refused. They often do refuse, they are terrible...the 'decision makers' are apparently 17yos in an office somewhere with no experience of MH problems. So an advocate will get you it.

Ring your county council and ask what they have got, also the NAS (autistic society) will know probably.

Good luck - this situation is almost untenable and should not be happening. Hope you can manage to get the help you need x

and btw the lack of ability to self care let alone help with the family is definitely sounding like depression on a major scale - aspergers wouldn't account for it. You might need to see a different GP?

I read your post and just wanted to add my support, my nephews are Aspergers, and my SIL at SAHM, she is pretty saintly in my eyes.

The others have posted really good advice, I hope your situation improves. Can family/friends pitch in? If I knew you in RL I would be glad to help out, often people are just waiting to be asked.

Hi thanks for the input everyone. It IS hard for me to cope.

No, he never could do chores unless with specific written instructions. He loses track of what he is doing all the time and needs a continual pressurizing to focus or he just wanders off. This was one of the reasons he has lost his jobs a lot. If there is no-one there to tell him what to do he just sits there. He has no imagination, empathy, or emotional attachment to anyone. He cannot use his own initiative, he needs guidelines that he can refer to to complete any task. This is one of the symptoms of his Autism.

He can make toast and tea, but until he married me he lived on breakfast cereal as he cannot understand how to cook. Believe me, I really have tried to teach him the most basic self reliance to no avail.

He lives 'inside his head' and occasionally makes forays into our reality. Our son is the same.

They are both formally diagnosed with my son being more profoundly affected than his Dad.

No-one understands how a man who has an IQ of 150 and is a whiz with computers can't work a washing machine, boil an egg or select appropriate clothing.

He has always been like this but since his breakdown his traits have become a lot more apparent.

I am up around 5.30am every day to either get ready for college or work and get DS ready for school, as well as having to get up several times a night to placate my son and change his wet bed.

My husband would stay in bed all day unless I make him get up at 7.30am I have to tell him to wash and put on clean clothes because he won't otherwise. He rarely drives now since he wrote his car off with us all in it
because he lacks the concentration to drive.

My DS and DH are constantly shouting at each other about who is wrong and it really is getting me down.

I tried once more today to broach the subject of work and was met with blank looks and grunts. Even special disabled agencies like Remploy have tried to help him but can't.

What a nightmare. I live 200 miles from my Mum and Dad and my Mum is in her 60's with mobility problems and my Dad has Parkinsons and Alzheimers, so I have that to worry about too.

Something has to give sooner or later!

Okay, this situation is definitely untenable. It's appalling that he was turned down for DLA. Many people get it on far lesser grounds.

It is possible he may not work again, or not in a way that allows a decent income.

Please try and get hold of your welfare officer. This is a first step. there needs to be some backup, too, a proper assessment by a specialist who can see how unable to function your DH is, write a report and send it to the DLA people. Your advocate will help you do all this.

He should be getting higher rate care and mobility from what I can gather, whichwould really help with your situation at least financially.

I'm not sure how to get help with his care but I am sure others here will have more of a handle on that aspect.

GOOD LUCK< you deserve and need help with this, and I want you to get it.

Thanks,
I don't know what a welfare officer is, where are they based?

The Mental health team diagnosed my husband but offer no support or help with any claims and do not write reports.We have a letter stating such.

All other psychiatric help was a couple of years ago now for his depression and they all failed to give any meaningful advice or help

The GP prescribed antidepressants but has stopped doing so now after they were shown to have no effect.

We have no family and live in an isolated rural house.

The only one who knows what my husband is really like is me and the benefits people won't ask me for a report.

My husbands high IQ means that on first meeting people see him as articulate and capable as he learns a lot of sentences to make them believe that. The trouble is, it is all superficial. There is nothing behind the words. As one tends to get a single meeting with these 'assessor' types they don't see the problem. If they asked him to plan, shop for and cook a meal or do washing and didn't give him precise written instruction on how to do it, they would realise the extent of his problem.

Obviously my husband realises his shortcomings and tries to hide them but the reality is I am the one organising his life.

If I don't remind and get him ready for appointments he doesn't go. He just forgets even if I write in on a calender he doesn't think to look at the calender, so it's pointless.

I just wish someone else could understand his problems. But there is no-one.

Can you see yourself living like this in 5 years, 10 years, the rest of your life? He is not going to change; he is getting everything out of being married to you, you are getting nothing. Sex, laughter, friendship, conversation, lurve should all be part of a relationship - you sound as though you are a carer/provider/dogsbody and give and give and get fa in return. I couldn't do what you do and the idea of that being it, for ever, would send me running for the hills. Who is looking after you and who cares for you? I could not stay in a "marriage" that was all give and no take - angst but no joy.

I'm sorry if this is unrealistic and I have no experience of living or working with autism so please accept my apologies if this is just annoying...

From the sound of it, your DH is clearly mega-IT competent, etc. Is there any possibility that he could do some sort of agency work from home? If he's not good in a work environment, is there anything that he could do from home? Just to fire his interest, maybe?

Try appealing against the DLA decision. The time for appeal may have run out, but you can reapply.

I was given to understand that DLA is turned down initially as a matter of course, and then looked at properly on appeal. Ridiculous situation, but red tape abounds. Good luck.

Talk to CAB and your student welfare officer as well.

Hi thanks again everyone,

Yes, I am (read was) a really strong person. Most people who know me cannot believe the stuff I have to put up with. I have the patience of a rock but even a rock is eroded by the drip drip drip of water. This is what I feel like now, that over the years I have been eroded.
I am a ghost. I drift around on autopilot trying to organise everyones life. My life is joyless, yet I try to snatch every little bit of happiness I can. My son saying something amusing, or giving me a hug. 10 minutes in the shower. I am many people, mother, nurse,therapist,student, businesswoman,cook, cleaner, washerwoman, builder, painter, electrician, gardener, petsitter etc. but I am not a wife and I am no longer 'me'.

As for the self employment route. He tried that, his company went bust. He cannot get leads, because he can't maintain relationships or sell anything, He cannot organise anything or work on his own initiative. He is like a young child in that respect. He doesn't see the bleeding obvius for one and cannot hold a telephone conversation. He also comes across as rude because he speaks what he thinks, he cannot hold it in, doesn't realise that others find his comments hurtful. He will actually say to someone 'you smell of B.O' or 'your perfume stinks'. He doesn't just think it..he says it out loud!
Also he has no imagination, you can't suggest a job to him if he hasn't done it before because he cannot imagine if he would like to do it or not! Confusing isn't it.
He can never be given a choice because he cannot decide things for himself. He becomes like a computer stuck in a loop then has a panic attack.

And he gets turned down for DLA..unbelievable.

I just rang the local council but the welfare rights won't get involved unless the person is already under the remit of a social worker. 'And how do I do that?' I asked. 'get a referral from the welfare people' I was told. What? Sorry? I don't get it!
I have a headache, I am crying, I have sent him out of the house for the day because I cannot look at his face without crying. I was up 4 times last night with my son and had to cope with a behavioural meltdown at 7.30 this morning over his face washing.

I even told the GP I felt like killing my husband and throwing his body down the well in our garden. She just laughed. She knows I am really a single parent to 2 disabled kids. one is 8 and the other is 43.

Sorry i can't help much but I have also heard (and read on another thread) that people always get turned down for DLA first time round and that you need to write a letter complaining about the decision or to appeal before you get it.

Chickpeas - take some time to yourself today (you really need it) make that 10 minute shower a bath for starters!

Then get yourself down to the CAB. They will be able to help you to self refer for some help - I am pretty sure you will be best starting with getting a social worker but your CAB will know about local arrangements and services.

There is help there and I have a feeling that although your marriage is very very uncertain you will want to explore help for yourself and your husband. If for nothing else to start putting in place a safety net for him. I know he is an adult and people will roar that you are not responsible for him (and to be honest I agree) but that is not the reality of your life right now.

Get some help, for you and for husband.

You poor thing. It all sounds horrendous.

Can I ask a possibly insensitive question? Why did you marry him? How did you get together?

Ok Chickpeas, sorry just got back.

i can only imagine how horrible this must feel when it is all down to you - trying to get through the maze with welfare and so on seems terrifyingly hard work but suddenl;y it will all fall into place, trust me, have fought this one myself.

Your county council probably is the place, not city council (my city council were also clueless, had never heard of welfare officers...)
ring the main switchboard and ask for social services.
THEN ask the social services person to help, say you have been told you need a social worker, but don't know how to get one.

They should be able to point you at the right department.
If this faisl, come back and I will try and do it for you - I'll need your county though. I'll ring them and get hold of the right number for you.

ALSO there is a helpline for disability benefits. (which he should also be getting - and you would qualify for carers allowance!)

here

Ring them,, say you are really really stuck and confised and need a benefits officer to help you.
We will keep banging our heads on the wall till we sort this for you.

have you tried going down the route of the children with disabilities team? depending how severely affected your son is? but you could try. does he have a statement of needs at school? does he get DLA?

agree that DLA for adults is often refused - they make it harder and force people to reapply/appeal. but speak to CAB or benefits adviser - call NAS helpline for details of onlocal aspergers group...

how aware is your H of the impact on you ? any awareness at all?

if you didnt look after him where would he go?

ultimately he is an adult and responsible for himself? unless he can ADMIT to himself and to others that he cannot look after himself... difficult one..

also you ened another more sympathetic GP - is there another one in the practice?

or can you go back and tell GP again that it is no joke and your family is at risk of breaking down and YOUR mental health is suffering...

what do you want?
to keep your H and DS?
to stay together but have help/respite?
for him to go elsewhere and be looked after by someone else?
to leave your H to his own devices?

your H wont change in many respects - but maybe he is mor capable than it looks and if he moved out to say a rented flat he would survive day in day out and be able to visit you....

is it ok to decide you cannot look after both DS and your H - and to think about a way out of this.

i woudl strongly urge you to see a counsellor (eg thru your GP) to think strategies and what you relaly want now and how you wnat your life to be in 5, 10 years... how you can make it best for your DS.

your DS has no choice in this you have to make decisions for him ...

your H - for all his issues - is a functioning adult -responsible for himself...

and if he is not, then you need to throw in the towel, stop caring for him - so that professionals will step in...

if you carry on as you are then nothing will change - not good for him, for you, for your DS.

(at one point i had to make that choice - stop caring for nowexP (depression, anxiety etcetc - tho along with controlling behaviour etc) and say i have 3 dcs incl one with SN - i simply cannot care for a P with issues as well. he is an adult and ultimately can get by... in late 2009 when he was v depressed again another adult stepped in to help him - there will always be someone who will do that whether professional or not)

ps is there anywhere your H could go for a while, even a weekend, to give you a break?
does he have any friends/family he could go stay with?

how does he respond if you ASK him to go somewhere for a few days?

how does he respond to possible prospect of you separating (even temporarily) - what does he want out of this marriage? why does he asusme you will always be there for him?

what about you going off for a few days with your DS? leave him to it?

why cant he write down his own lists of things to do?
he clearly is intelligent enough to recognize where he needs help - he should be able to manage his condition himself eg writing lists/reminders/schedules.... is it "cant" or "wont"

what would incentivise him?

if nothing - maybe is time to spell out some ultimatums, writing them down...

can you get him back to GP?

if as you say he hides his issues and comes across as fine - then maybe he is more manipulative (and capable) than you give him credit for....
it is a hard one...

Sheesh, where to start?!

He is pretty much estranged from his family. and they live a distance away. He cannot go to them to stay.

If I ask him to leave, which I have done on many occasions, he just says 'where will I go?' and walks away.

Everytime I try to talk to him about his situation in a calm manner his face looks like a thunderstorm, rather scarey actually,but I see the shutters come down and he just sits there with no response to any of my questions. If I ask him what he thinks he says 'I don't think' Even the Doctor at the CBT Clinic discharged him saying because he was not in touch with reality he couldn't be helped. He has been to many (lost count) counsellors, Dr's , Psychs etc. none can help him.

He ignores everyones advice believing his way is the right way.
I asked him the other day if, after trying it his way for 1 year has resulted in nothing, how can he believe it is the right way? He said he doesn't know. 'Why don't you think about it?' I said
He said 'I don't have any ideas'

It is like banging my head on a brick wall.

He has changed Gp's several times but they all come to the same conclusion. The one he sees now says she doesn't think he will ever be able to go back to work in a full time job. I know she is being reslistic but it is very depressing.

The fact he sits in the house all day doing nothing winds me up no end. I tried to write down tasks for him but they are left undone or half done and never finished.

We first knew each other when we were 19, we are both 43 now. We both went to Uni then met up again a few years later and just fell into a relationship. We were career people and rarely saw each other. We had a lot in common, interests etc. He was always 'strange' but not too noticeable on short contact I guess.
The older he got, the worse he got.
Preachy, obnoxious, fussy, panick monger etc. Stress with work, but he is set in that framework now. It is part of him. The amount of attention to our son was one problem. He couldn't cope with the messiness and disorganisation of parenthood especially to an SEN child.
Got to go get kid from school now.

hmmm reminds me of my ex in so many ways...."no ideas" "out of touch with relaity", unable to engage with CBT... etc...now he currently not depressed he is surprisingly capable...

does he say "you are the only thing I have"?
"i have nothing else" ?

or, in reality, would he actually notice if you were not there?

does he WANT you and DS or not?

if he wants to keep you - he has to get help and step up....

you are not obliged to continue to care for him - you can make that choice.

he can make that choice.

"in sickness and in health" - but you need to decide if he could in fact help himself or not.

and if not - you entitled to ask for help/respite....but he has to come forward to and decide he needs it.

i would stop doing all you do for him. set boundaries.

and try and get away yourself with DS even for a short break to get time away to think.

Poor you, you have TWO SN children to look after, don't you?!

Practicalities first: What the mental health team told you was rubbish. I get help for my claim forms & stuff from a social worker who is attached to the MHT. Even if your MH unit doesn't allocate budgets to social care, there is some kind of mandatory assistance - that's what "care in the community" is. It is true that DLA is generally refused on first application. I don't get it (grrr), but I do successfully get a "second review" each time they turn me down. The social worker asks for it, they know the right things to say!

A written diagnosis from a specialist might possibly help you. I understand it would cost about £150. Check with your GP.

The CAB should be able to provide better information on how to pursue his RIGHTS with regard to social care and benefits.

Aspies are in high demand within the IT industries, even if they're pretty well non-functional in other respects.

Next: My XH#2 is an undiagnosed Aspie. He was also very emotionally abusive. For a long time, I thought this was technically impossible but now I know I was wrong. If your H doesn't care about you, to the extent of attempting to help & support you, then you have some serious issues to consider. Same for your son, of course. There's an Asperger's thread in this forum, where you will see posts by women who - while immensely frustrated by their Aspie H's - do feel loved and cherished by them.

Lastly: I'm really sorry you're going through this - I feel you're taking too much responsibility for the basic welfare of your supposedly adult partner. I'd STRONGLY recommend finding a counsellor for yourself; you need something to keep you grounded in this very odd situation.

Good luck

just to second what grace said, i did find it hard to separate/understand/comprehend the emotionally abusive/controlling/manipulative bit from the "genuine" depression etc issues. how much is really beyond his control? how much do they "choose" ?

for so long i "cared" in the practical grinding looking after an adult sense justifying it "oh he is depressed because of our SN son/ because he left his job /because this because that.... "

there is no doubt tho that from what you say your H should get DLa etc. if GP saying he "cannot" work... the remainder - is a whole nother issue..

www.efd.org.uk/media-centre/news/5044/company-employing-autistic-people-comes-uk

I have a computer minded autistic 18 year old and clearly the emploment opprotunities are crap. The danish company mentioned above are approaching this in the right way, ie how can we use the benefits of what makes asd people different.

Wish they would set up down south. Are you in Glasgow op?

Chickpeas,

I don't feel qualified to help in any way, but am watching this thread with interest. My DP has many of the qualities you describe (particularly the thunderstorm, shutters down, non-responsive reaction to any attempt at rational discussion).

I find myself wondering where it all went wrong. We have two beautiful young children and although he is functioning and just about holding down a job, his anger and moods are quite unbearable.

I hope you manage to find the support you clearly deserve and need!

Good luck