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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

369 replies

ladybug201 · 04/09/2015 17:28

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.

OP posts:
Original poster
ladybug201 · 04/09/2015 22:08

Devilish - with respect, your son sounds further down the line, if you like, than mine.

Clearly yours is an unenviable position and I don't claim otherwise, but you seem to be assuming I decided it would be all right for DS to go ice skating, skydiving, horse riding.

I didn't. He did. Completely independently of me. He did it without telling me, and it was only when DD in frustration mentioned what had happened that I knew anything about it.

DS is not in the eyes of the law anything or anyone other than a 'normal' man - of course, he isn't really, but a slightly more severe form of the condition might mean we could access support easier. As it is, it's a very fine line between normal functioning and not, and the tragedy is that DS is also aware of this.

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DixieNormas · 04/09/2015 22:10

This reply has been deleted

Message withdrawn at poster's request.

BoffinMum · 04/09/2015 22:11

I can't remember if you have told us. Has he seen a consultant psychiatrist? Privately? Waving a top, top consultant's letters made a big difference in being able to make progress with a relative in our family who has related problems to this.

OnlyHereToday · 04/09/2015 22:12

Do you think he would respond to a buddy or carer? Could it be afforded? It could be dressed up as a cleaner type arrangement or would that not work?

There is an element of him needing to want to change and I agree you can't really make that happen. It sounds like you need a way to share the load somehow though.

If he's known to the GP and has a diagnosis he won't be completely under the radar. It's all about need and it sounds like his needs would qualify for support.

Original poster
ladybug201 · 04/09/2015 22:13

He has boffin, he has ... Really and truly we have done everything.

DS has always clung onto one item of clothing for forever. Always. But as a little boy I could wrestle it off him to wash; I can't now.

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Original poster
ladybug201 · 04/09/2015 22:14

No, it wouldn't work. The house isn't particularly dirty - not great but no worse than many. His hoody is dirty because he sleeps and eats in it.

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Devilishpyjamas · 04/09/2015 22:14

I'm not suggesting you marched him off to skydiving. I'm saying he probably did!really want to do it. Then couldn't. This is pretty much a daily occurrence for us. Ds1 wants to go to the beach. So we take him. Then he can't get out the car. Or he wants to go to my parents for dinner Then he can't cope with the idea half way there & attacks me. Today Dh and I have been left bruised because be chose to wear a different top than usual then couldn't cope with that.

It's one of the shittest things about autism imo. My son cannot do the things he wants to do. That sounds very similar to yours.

NeedsAsockamnesty · 04/09/2015 22:15

For fucks sake.

The op's son has the right to decide to do what ever the fuck he wants providing it is legal.

Adults with disabilities who do not lack capacity to make decisions for themselves (and even sometimes when they do) cannot be treated like children. They do not need to gain permision to do stuff or go places.

You cannot stop them making choices nor should you even if they are bad ones. Just like adults who are not disabled.

OnlyHereToday · 04/09/2015 22:16

Has he had support since the diagnosis? Online forums if not local support groups. Would he talk to others?

Original poster
ladybug201 · 04/09/2015 22:16

Well, quite

The particular issue here is not they DS did something and didn't enjoy it but that this impeded on someone else's enjoyment too.

This has been consistent right through since toddlerhood.

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Devilishpyjamas · 04/09/2015 22:16

Er who was that directed at?

Original poster
ladybug201 · 04/09/2015 22:17

No, he wouldn't.

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Badders123 · 04/09/2015 22:20

I agree with boffin.
Time to get yourself some counselling/help?
It does make me wonder how many other people with asd are not getting help because they "aren't quite badly enough affected" :(

Devilishpyjamas · 04/09/2015 22:21

But ladybug that comes back to adjusting your expectations (to make you happier - or whoever is with him). When we take ds1 to a cafe (for example) we don't expect to enjoy the meal iyswim. I used to hope that we'd have a good day if we were doing something exciting. Now I just assume it will go pear shaped & have been much happier as all result!

I was forced to have cpunselling a few years ago (it was a condition. Of a program ds1 was on). I was very grumpy about it & assumed it would be useless but it was actually one of the most helpful things I have done. Completely (& unexpectedly) changed the way I think. I might go back for some more now gems becoming an adult.

OnlyHereToday · 04/09/2015 22:23

Ok, not easy at all.

Don't answer if you don't want to but how do you feel about the diagnosis, how long has it been, does it help or not really?

DS1 knows when he's spoiling it for others but he really can't help not being able to cope. It's not easy all round, we divide and conquer which you can't do which makes it harder.

Devilishpyjamas · 04/09/2015 22:24

Oh & when I used to expect a nice day I'd end up silently sobbing the way home.

I did have to change expectations again this year (not expectations of him, expectations for me - on what might work & might not work).

Initially I was gutted when something that had worked for years was suddenly a disaster - now I expect it to go pear shaped & am emotionally better able to cope.?

Badders123 · 04/09/2015 22:28

Has he been "worse" since your husbands death? (I'm so sorry for your loss)
Would he have any truck with Bereavement counselling?
Does he fear something happening to you?...Is that part of his anxiety?
Please don't feel you have to answer if I'm being too personal - but Sadly we have had multiple bereavements in our family and my (nt) ds has found it very hard and it has led to lots of anxiety on his part.

Original poster
ladybug201 · 04/09/2015 22:29

Devilish - but I have an adult DS.

At this age, usually, the relationship has shifted and changed from being that of parent and child to more of a friendship.

I don't have that with DS. I feel you are focusing on the examples I give and making 'suggestions' to make it 'better' - I don't, exactly. I have explained why going out with DS is largely pointless - it isn't enjoyable for us although where food is concerned DS loves it - but what I'm trying to talk about here is my feelings.

Perhaps it's selfish but i feel I've earned the right to be selfish. I am world weary of not being able to do anything 'normal' with my son, of not being able to have an 'ordinary' adult relationship with him, of being drained of every fibre of patience and kindness as I listen to the same story with the same comments and remarks, the breathtaking lack of kindness and sensitivity, the rage and the anger as he describes an argument that took place ten months ago.

I'm tired. I wouldn't say so to DS because it would be rude and besides, it wouldn't make any difference.

But here, on my thread, I'm fed up and I'm worn down.

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BoffinMum · 04/09/2015 22:30

Well you can't 'fix' him, and clearly he has had a bloody wonderful mother on his life journey who went above and beyond the call over and over again. Bloody ace mother in fact.

But you can talk it out with someone helpful and from experience with DS2 who had quite extreme MH issues, parental counselling can make a massive difference. I wonder if it actually changed my life.

Badders123 · 04/09/2015 22:30

This is your thread....vent away!

Original poster
ladybug201 · 04/09/2015 22:31

No, no, it was years and years ago. He isn't anxious about me. He was investigated at work six years ago. This continues to be a source of extreme anxiety.

Something will go wrong at work.

For months afterwards (I am sure people have got enough of a grasp of DS now to recognise this is no exaggeration!) he will talk about it. What happened, what he should have done differently and Will I Be Referred?

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BoffinMum · 04/09/2015 22:34

Just one thing to add - is it really rude to say things out loud? I am not sure the normal rules of rudeness always apply with ASD. I have to be explicit with my adult ASD nephew and it's quite helpful in clarifying certain consequences and expectations. I do it quite factually, just giving information. He does respond to that. But perhaps it is not the same for everyone.

Samcro · 04/09/2015 22:34

i do wish mn had a place for people with adult children with disabilities.

when your child is an adult, you can't do the same things you could when they were a child

BoffinMum · 04/09/2015 22:35

Has he got ADHD as well?

Original poster
ladybug201 · 04/09/2015 22:38

No, he hasn't.

It is something you can say sometimes boffin, but the truth is with DS that if you started to criticise you'd just never stop and as people have said - you can't fight it, you just can't.

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