To feel as if I hate having the son that was given to me

[ladybug201]

Unsure how to phrase that. Obviously don't hate DS.

He is an adult, with autism/ASD. Never had a "proper" job. Lots of studying, lots of short term jobs. Came round asking for money. As nice as could be - always is, DS isn't horrible.

But he's not interested in anything that doesn't affect him. Doesn't ask after me. His sister started a new job today - she says the same, doesn't ask after her, just drones on about his own life and to be honest it's nothing we've not heard a thousand times before. How many times can you say oh, that's nice, great, fantastic.

I don't know. I wish I had a son who didn't have this condition.

capewrath

Re tips on face washing/dish washing:

Use facial wipes rather than soap/water, or cream cleanser or wet cotton pads to wipe over face.

Buy a dishwasher! Or suggest ruber gloves, and running the tap hot and washing each item individually under it. Scourers/brushes preferable to squishy cloths.

I have asd and haven't put my hands in dishwater for over a decade- I'd feel like vomiting/have a meltdown. Water on my face is similarly repulsive- I only have baths not showers and avoid swimming. The world is a sensory minefield for me.

OP- I can see both sides of your situation. I'm a similar age to your DS and have similar issues. I am high functioning in that I have a DP, DCs and a career but I am very dependent on DP for personal hygiene etc. eg I'd go a month without realising I'd not had a bath so once a week DP will run one for me. I'm sensitive to the temperature change so he'll put the heating on, close the windows, warm the towels etc. DP does my laundry too as if I didn't have a particular reason to 'dress well' eg work/social event I'd sleep in my clothes, wear them stained for days etc. I hate the sensation of dressing/undressing. I'm also really particular about fabrics/fit. No one could buy clothes/shoes for me.

Re: toothbrushing, again I'm similar. I hate the taste of toothpaste and the sensation of the brush and most of all any that dribbles out around my mouth. It's a huge chore for me so I do avoid it. I probably only brush 3/4 times a week. But I have managed to keep my teeth decent by finding ways to keep them clean that I find more tolerable. (Partly this is to avoid the dentist) eg I floss 2+ times a day. I avoid sugar in my diet. I don't drink coffee. I drink liquids with a straw. I use the DIY dental tools you can get from the chemist to scrape plaque off my teeth after eating/drinking. Maybe some of these ideas could help your DS?

I also know what it's like to have a DS with asd. Mine is a teen. He is high functioning, undiagnosed. I don't doubt that he'll have a 'normal on the outside' life. But things like taking him to a cafe we gave up on years ago. He will never say he loves me or ever get me a birthday/Xmas/Mother's Day card. His teeth & clothing habits are similar to mine/your DS. My attitude is 'don't sweat the small stuff'.

He too only wants to talk about himself/his special interests. Even if someone else hurts themselves he won't show any empathy. We don't really talk very much at all, even though we live under the same roof we are like passing ships. He doesn't even say hello when he comes home. But I've just accepted this as the way things are. Like you I have another DC who I can have a 'normal' relationship with and I'm very grateful for that.

What I would suggest is that you find out about any local support groups for you (try nas/facebook) and adult asd groups for DS. I think he needs to find someone else to talk at/ share special interests with as he seems very emotionally reliant on you.

If there aren't any then have a think about setting these up yourself. It could have long term benefits if you can make a success of it. There will be others in your/DS's situation, you just need to find a way of contacting them. I think you would both benefit greatly from it.

I work with adults with severe mental illness eg chronic schizophrenia (not usually ASD but often they have similar problems eg with hygiene)

I am aware that there is a big hole in service provision for adults with HFA who are too high functioning for LD services and not taken on by mainstream MH services. Sometimes this gap gets filled by charities and social care.

We often try to help parents disengage from supporting their adult offspring so intensely. It seems to be better for everyone that way. It is surprising what people will do for other adults that they won't do for their family. There was a lovely thread on here recently from the sister of an autistic girl. The sister moved out of home into supported living and their relationship improved no end and they were able to enjoy time together again.

There is also the aspect that (as you rightly point out) there comes a point when you can't force an adult anymore to make 'the right' choices: when he was young you took care of his teeth and his hygiene but now that he has to do this himself he chooses not to for reasons that are illogical to most people. It is painful to see him making bad choices and harming himself especially when it seems he is throwing away things you struggled so hard for but really threre isn't any alternative. You can point out the right choices, try to make it easier for him to take them but if he doesn't do it then you have to stand by.

You are certainly not alone in having these feelings. I meet lots of parents of adults with LDs and MH problems struggling with the same things (the young lady with Down's whose parents were horrified that her weight ballooned when she started living independently, the parents of a young man with schizophrenia concerned at their son's homosexual relationship with a much older man). These are things that would concern any parent and the more so when your child is vulnerable.

My practical suggestions:
Applying for PIP and using it to get a carer/ befriender/ mentor to take him out and take some of the strain off you
Trying to get him involved with a support group or charity for autism or MH problems more broadly, even online to help him meet others and possibly accept it a bit more
Having some counselling yourself or attending a carers group. Just a space to talk about how it affects your life.

I think you have an issue with your son not accepting his autism. I have no idea what the answer is as I currently have the same situation with my son. It makes it very difficult to help (I want to show my son some videos of non verbal people like him who are inspirational - he won't watch them & goes mad if autism is even mentioned). It's a shame because befriending services wouldn't probably help him a lot.

I do think you have to protect yourself. Can you hide if he comes around when you have told him you are not available? I know that sounds awful but it may be the only way to break the reliance. I have done something similar with a young hf man with autism who was constantly messaging me. I told him when I was available & he carried on so now I ignore unless I have said I'm available (& I remind him of my availability when I do reply).

When my son goes to respite now I don't ring. I used to but found it stressful worrying about things I couldn't deal with. Now I just leave it & expect the service to deal with issues. I know you can't access respite & it wouldn't be appropriate for him anyway but can you have times (maybe starting with one evening a week then build up) when you are unavailable. You may need to go out/turn your phone off initially (until the next morning). It will feel cruel & hideous to begin with but he can learn that routine & if he doesn't he can survive them & you will then know that you have a few hours each week when you can switch off completely & not feel responsible for him.

Oh and I have just thought - There is an app that can have real live people on the end designed to give that hand/support - it was designed for people with HFA & has gas great reviews. Let me go away & try & remember its name

Darn can't renember its name & have to go out now. I will post this afternoom with it but it might be ideal for your son as can provide real people to talk through anxious moments

Op I've just read this thread and want to say that you are allowed to feel whatever you feel about the situation.

It doesn't seem as if you have come here looking for solutions, and that's ok.

Being able to say sometimes that your own life isn't what you would like, for whatever reason is fine
The way that I've read your posts is that this isn't even about your son in a way.

It's about the fact that there is something in your life that drains your heart and energy.
It's not that you don't love your son but that you are impacted daily by something that you would dearly wish to change and can't.

I'm sorry you're having such a hard time

If I sound negative, I just want to quickly state that I cannot put into words what it means for people to understand and recognise where I am.

For years people haven't understood at all, even a small amount. People think you can disengage - 'he's an adult!' He sounds incredibly similar to Maryz son, and no, he absolutely won't accept he has autism, and if they don't, all the help in the world could theoretically be available but they won't take it.

It means a lot that so many understand and sympathise and say yes, that's happened to me too.

It does. Don't even think that because you haven't made a suggestion that you're not helping. Saying - yes, I am where you are too and it's shit means so very, very much.

it sounds very hard and understandable that you feel like you do.

Wanted to send sympathy too. I have teenage DS with Asperger’s and I am not in that position and I hope I wont be but I honestly don’t know. DS was very difficult as a child, is coping amazingly better as a teenager and who knows how the future will turn out. DS has basic hygiene within the scope of average-to-skanky teenager. He changes his Tshirts and trousers all the time but he only wears two school shirts a week because he has to iron those himself. He will wear his dressing gown or a chosen hoodie forever unwashed though he will find another if I chuck one in the washing machine. His empathy is not non-existant but I would say it is blunted, and boy does he go on about his own interests.

Doing it alone must be very tough. At present my DS actually puts more demands on DH than me, they’ve always been close and it gets between us at times. I think it’s sometimes easier to do things for a stranger because (a) there’s less emotional investment and (b) it can be much more on the carer’s terms and there’s more respect for a non-family carer’s needs – there are limits and boundaries and breaks from caring. A volunteer or professional isn’t on call 24/7 365 days a year and they don’t feel they have to be the last-resort back-up person.

Like maryz I got a lot of benefit from counselling. Not practical advice, and not knowledge about ASCs (I told the counsellor about it!) but some strategies and techniques for protecting myself emotionally, and most of all a safe place to vent my worst feelings about DS where I would not be judged and where no-one else would feel hurt.

You sound like a very loving Mum. I hope you can protect yourself a bit. I also hope you can find better support for yourself and your DS. And whatever happens I hope you have some things in your life that bring you joy and comfort and help to rebuild your resources.

I feel like the OP. And I'm ashamed that I still write that. MN has supported me for over 10 years and you would have thought that in that time, I would have grieved and got over the loss of ds1 not being NT.

It would appear I haven't got over it, despite trying. He's so nasty to me, hurting me physically, mentally, emotionally. He's so pathological, cold and nasty and uncaring. I know it's the condition. But sometimes even knowing that doesn't help the situation you actually find yourself in.

He can be lovely and caring.
I give and give. I get almost nothing back. A health professional concluded I was in an abusive relationship - he was abusive to me.

Great. I'm in an anusive relationship, that I'm duty bound to stay in.

You have my, understanding, op if nothing else.

This thread is really poignant and sad. There have been some thoughtful replies.
I'm so sorry that so many of you have such a difficult time.
Its just a crap situation. It's no ones fault.

It's incredibly difficult, and the last thing I want to do is be doom laden, but in my experience DS was fine as a younger teenager. He was 'quirky' at school, but he had an intense interest in science and so he came through his GCSEs modestly well with Bs and Cs. He went on to sixth form college to sit A levels and in hindsight that's where things started to go wrong for him and more so at university.

I suggested paying someone to go in because I have done a little bit of volunteer work which has taken me to extreme-learning-disabled-adults' supported homes.

I was gobsmacked at what great lives these people have, much more interesting than your average retiree! And it's because the paid carers and support workers do such a great job, plus some socializing with volunteers. And some socializing with each other.

Obviously the workers are fully trained but the volunteers are just kindly people giving of their time. I feel someone could help your DS but to expect it for free is a bit unlikely but I'm sure there are people out there who might be happy to help.

But scooby, they are extreme cases of adults with learning difficulties.

There is nothing DS isn't capable of doing or understanding that you or I aren't, but he exists in a bubble where his needs and his wants are paramount and nothing will change that. The hoody - for example, most of us change our clothes because we dislike the feel of being dirty, we fear social shunning if we do, we dislike the sensation.

If you like the sensation and if you genuinely don't give two flying fucks what others think, why would you change your hoody?

I've no experience. My heart goes out to you. Your task has by and large been a thankless one.

I would certainly accept that your son is this way. I would give up on his teeth and clothes. I would stop mothering him.

I would look into a befriender. I would not have him visit every day or you visit him.

You can do these things. You can tell him why. You would not be u reasonable to do so.

You have dedicated a large chunk of life to him. For your own sake. Put yourself first.

You aren't responsible for him. You aren't. Let go. Let go. Everyday is too much.

He needs to know that. Whether he likes or understands it is a different thing but not your problem.

Why make his problems yours?

Give yourself permission to take a huge step back.

Er who was that directed at?

Everybody who is saying the op should do anything that effectively means she is operating outside of her sons wishes and feelings

There is nothing DS isn't capable of doing or understanding that you or I aren't

I don’t think that’s exactly true. He is physically capable but he surely has some very weird cognitive things that get in the way and certainly he has some profound disabilities in social perception. Your DS actually needs support to do fairly basic hygiene. OK he can wipe his own bottom and run a washing machine but… a guy who desperately wants a girlfriend and a job but can’t keep himself clean enough even to promote those goals really is deeply disabled. His understanding is deeply flawed. He may understand logically the connection between “clean” and “pleasant to be around” but he cannot feel it. Feeling is part of understanding.

I dunno. It’s so hard to get outside agencies to see this stuff. They’re all about “can he do it physically” and “does he logically understand the need”. Very likely your DS could parrot the reasons why people should be clean if an assessor were to ask. “Can he feel the need to stay clean” is not on anybody’s list. The idea that someone might not be able to feel it and they are not mentally ill (e.g. with depression) and they are not deliberately choosing to ignore the feeling… well unless they really “get” ASCs they’re not going to “get” that.

Here - brain in hand - it doesn't market itself as an autism app so may be acceptable to him. I have met adults with HFA who rave Aboit it.
braininhand.co.uk

When I was a child in the 50/60s it was the norm for single men to have cleaner/cooks coming in to do for them. In fact the elderly local gentry nearby seem to have 'someone who does', weekly or daily if necessary, and no one bats an eyelid.

And someone who came in for an hour a day, on whatever pretext, could easily listen and empathise with his babble for just that short time, then walk away without any stress.

I have money saved so that when I am old and needy I will pay whoever is necessary to care for me, rather than lean on busy family, family is for fun times not housework/caring. Many will disagree with me but thankfully I am not their family and expected to put my life to one side whilst I care for them.

Scooby, you don't understand. I don't know how many times I can say the same thing in different ways. It might be best if you could possibly stop posting on this thread as I feel I am having to defend why I haven't hired somebody to come in for an hour a day for DS.

Outside agencies might be able to provide these things for DS but if he refuses to accept help (he would) then there's nothing more he or I can do.

This thread makes hard reading. My DB1 sounds similar to the OP's DS, but DB is in his late 40s. And sadly, I have nothing helpful to suggest

for you, OP - it's a desperately sad situation for you and for him. And for my DM and my DB1.

It really is impossible in that kind of situation, there is very little you can do except ensure someone is advocating/watching somewhere if you can, take a step back and wait for what comes next. It sounds like you need a break. I liked the comment earlier about allowing yourself to step back.

You cannot help someone who is not ready or able to help themselves. I do think he is more disabled than you think though. It doesn't matter about cognitive ability, his social skills mean he is not functioning well, let alone to his capabilities. He has to want or accept help with this though.

It sounds like a lot of empathy and acceptance is needed all round. It is rubbish these simple things are beyond him, it's rubbish he knows it but is stuck re: doing anything about it despite plenty of interventions. There must be an org out there that has some ideas. My guess is that they would say look after yourself, step back and take a break and wait though.

Sorry it's so awful, hope you can find a way to switch off for a bit.

It isn't that I think he isn't disabled. It's that he doesn't think he's disabled. Simple as.

I fail to see how you could have done any more than you have done, op.
I do think pp are right though, and that its ok for you to step back and put some boundaries in place.
You have been and are his best advocate, but who is yours? Who is looking after your mh needs?