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.

OP everything you have written resonates with me.
My dd has ASD and lately I am so down about it. She is a teenager.
Your words of 'Nothing is ever enough ' sums it up perfectly - nothing is EVER enough and that's what I really struggle with.
I often feel like I literally cannot take another day of it, then I remember that I have no bloody choice.
The effect of ASD on the whole family needs to be experienced to be understood,sadly.
I wish I could help. All I can do is tell you that you aren't alone and to keep talking if you want too xx

No advice - just reading a painful tale with no winners. You sound like an awesome Mum

Ollie, I have done so, to my shame - not so much about the clothes but I did yell at him a few weeks ago. His teeth are awful and he kept doing these huge yawns and not covering his mouth. I told him in the end it was making me feel sick.

It works in the here and now - he does take criticism well - but it doesn't make any long term difference.

lady, it's obvious you love your son, and equally obvious that you feel exhausted and depleted by him. I agree with whoever said up the thread that it sounds as if you, not your son, would benefit from support/respite/counselling, and/or a safe place in which you don't have to defend yourself in order to vent.

For what it's worth, I think you are dealing bravely, honestly and gracefully with a very difficult situation.

I think quite often it takes a while to get used to those things you describe, camping, skydiving etc...someone with Asd would have a lot of issues with the transition/change/sensory stuff when they were new to the activity..he was probably just scared rather than being cowardly/whingy. tbh I would suspect that sort of thing would work much better in a group of people rather than 1:1 with a family member - too much baggage and chance as you say to exploit sympathy rather than trying to hold it together and possibly eventually enjoy it.

Again he is missing out a stage in the conversation...obviously his mind picks up what you are saying and then instead of responding to your comment he flashes forward to his own experiences but that doesn't mean he isn't listening to you; it is just not the words he is using.

Would sheltered housing exist near you? I suspect he is really lonely but again needs some bigger group rather than in this co-dependent despair with just you - it would probably lift him out of a lot of his depression to engage with more people in a routine setting. Or am I talking bollocks? apologies if I am. It seems just sharing the load is the key to all this..

Or what about setting up a system where he gives you dirty clothes and you give him back clean ones - a clear link between one being taken off and washed and you giving him new ones to put on? It may seem humiliating but maybe he just needs some structure in his week for these small issues. I am not suggesting you stand over him, just try and get some beneficial housekeeping system going for him on the most basic level. A friend described how her mother refused to have a bath and change her clothes..I think on a comfort level it was hanging on to something familiar and just fear of transition. |She needed my friend to come over every week and persuade her what the routine was.

Hope tomorrow is better and there is a ray of light someone. xxx

But to someone like your son, you are the all powerful safe person - he just assumes that you can go on giving and helping him. Maybe you should phrase things in very simple terms like I Need you to do x I want you to do y This makes me happy this makes me sad and cut out all the understanding of his difficulties, it sounds like he's got a bit of a reassuring mantra there to himself about feeling nervous (btw he probably IS feeling nervous); what about replacing it with a mantra about you needing him to be nice to you, my mum is feeling sad, she needs cheering up. Ds2 responds really well to this sort of basic stuff, not in a sophisticated way you understand, just cups of tea, pats, buying the milk and it stops him being quite so self obessed And IT CHEERS him up. everyone wants to be needed and useful.

My dd has asd , I would be really happy with " that's great" rather than " ok"
I know it's only a tiny snapshot and I don't know your ds. However that text seems like he has learnt how to show an interest in others when it doesn't come naturally.

The way you feel is totally normal. It's hard because you're his mother and can't abandon him. You will always worry about him and want the best for him. But you wouldn't be human if it didn't get to you.

Sometimes I feel so fed up of DS's autism. I feel really frustrated and annoyed at him! I'm angry and sad because although I love him with all my heart - I want him to be a normal boy. I hide my feelings from him but sometimes I'm short tempered. I know it's not fair on him but it's hard to cope with this. I really can't imagine how I'd cope if DS was worse.

I want him to play with other children at school instead of being the one wandering around alone - trying to join in but getting confused and thinking people are fighting with him. I don't want him to be on the edge and not noticed. One or two friends would be amazing - really, really amazing.

I want other children to be asking their parents if DS can come to play at their house - but he is never asked.

I want him to talk to people normally - to remember to smile and say hello instead of forgetting and blanking people

I want to bring him to football at the weekend - but if I do he would start crying and acting up and the other parents will be all looking at him. So all the other parents are meeting at football and other activities that I can't take DS to so we get more isolated .

I want him to be doing well in school and not be the child who needs extra help. I don't want to be the parent who gets the extra long parent teacher meeting because there are so many issues to go through

I don't want the people at his after- school club to have to make an extra special effort with him because he is 'special needs' - I just want him to be one of the crowd

I felt so sad going to a support group for parents of children with autism because I did not want to be there - I want to be the parent of a normal child meeting parents of other normal children - not spending an hour at the weekend talking about depressing autism problems.

hours it will get better, I promise you. Ds2 was like that at 8 and now at 13 he loves going to football matches, has a friend who invites him round and joins in in many if not all group settings. Despite still having difficulties in lots of ways. It will get better..one day you will suddenly notice all the things that he CAN do, not just the things he cannot.(though they will still be there too)

OP I suspect my son has ASD but never diagnosed but he is wonderful. However his life is always going to be entwined with mine.

My friends ds ( ASD)is turning 15 and I see this struggle beginning.

It's very hard and very lonely for them.

Hedgehogs- walk a mile

Op

I really sympathise OP.
I think my brother has ASD. Life is such a struggle to him, and exhausting for others. He has severe depression and whilst very bright, can only last in short term temp roles before he gets overwhelmed and has to leave. He is completely self obsessed, he will talk for hours and hours about himself, turning over and over old ground and completely oblivious to the challenges anyone else faces.
He is dreadful in social situations, turns up in dirty clothes, unshowered, has been told at various jobs that he needs to improve his personal hygiene, but thinks they're being unreasonable.
He is extremely intense to speak to, sits too close and invades personal space, makes inappropriate comments about female family members etc and then cannot understand why people get upset. He breaks or loses his own possessions and those of others (he once lost a much loved pet of my child because he let it out into a room I had told him was not safe) and he takes any attempt to discuss anything with him as us 'getting' at him.
It's so difficult, because he's permanently so so unhappy, but also so difficult to help and so draining for the family.
My biggest fear is that one day he will kill himself through sheer misery. He has an open and regularly repeated invite to come and live with us if things get too bad, but it's awful to admit that I hope he won't need to because he's so challenging.

The problem with those explaining that their DC have a more severe form of autism, apart from it not being a competition, is that it misses the nearly but not quite challenge of DS.

Sheltered housing - we'd be laughed out of the local council.

He can almost cope alone. Indeed, he can 'cope', if coping can be characterised as getting up, paying bills, functioning after a fashion.

But - personal hygiene - terrible. You can wash his clothes, but the fact is, if he wants to wear his favourite hoodie he will, regardless of whether it is clean or dirty. (And you're right; I don't want to have to do my 34 year olds washing.)

Conversation - terrible. Drones on. Laughs inappropriately. Talks about inappropriate things - DID YOU HEAR ABOUT THE MAN EXPELLED FROM THE HOUSE OF LORDS FOR SHAGGING A PROSTITUTE - DS, we're in the early learning centre. Talks too loudly, laughs too loudly, yawns, burps, farts. Constantly on edge. I'm so very tired.

Styling, that does sound very like my DS.

I can only sympathise hugely.

We have a little girl living upstairs from us with ASD. I feel sorry for and admire her parents. YANBU.

Nobody can really understand unless they have been there. Not really. I have learned that.

My DS has ASC. Love him with every breath in my body. But its so relentlessly fucking hard.

I square it with myself by thinking 'its harder for him than it is for me'. He is frustrated and lonely a lot of the time. The world isn't set up for people on the spectrum.

That's the guilt. It's harder for him than me. I wish I could absorb his ASD somehow; take it, keep it away from him. And because it is 'mild' in the sense that he is high functioning, he has moments of clarity of 'I have wasted my twenties and thirties'

What can you say?

What can you say that you havent said a hundred thousand times already?

Yadnbu

I have no doubt that you love your son and would do anything for him. You don't hate him, you are angry with the asd that makes his life harder and also makes your life harder, including giving you these feelings.

You're allowed to resent the condition, it doesn't mean you don't love your son.

I really have sympathy for you op, its a really tough situation.

Focusing on the hoodie situation in particular, does he just 'forget' that you told him he shouldn't wear it if it hasn't been washed or does his autism make him not care? It must be so frustrating to see him make the same mistakes over and over despite telling him so many times.

I have a DD (adopted) with attachment disorder and FAS. I adore her, but she can be extremely repetitive and it's wearing when you really want to respond positively, but you already have 6+ times to the same piece of information.

I recently volunteered on a residential for children with ASD.
The child I was with was absolutely gorgeous; I loved him after just a week... but oh how I realise how much his mum needed that respite!

Both him and my DD are still young... DD is still only 16. I have no doubt that things will change as they get older. You can make an 8 yr old shower, but not a 34 yr old.

He doesn't care. Sensory issues - it's comfiest against his skin after several wearings, so he keeps it on until it's utterly filthy.

When he was young, I did find him easier to manage. His teeth in particular really are a source of distress to me. I spent hundreds of pounds in orthodontic treatment and as an eighteen year old leaving sixth form college he had lovely straight healthy teeth. Now most of his back ones have gone or have huge fillings in them, the front ones are discoloured and eroding.

Oh this is just bloody horrible... I feel so badly for you op. I would be a mess.. All I know of autism/asd is "quirky/bright" which almost make it sound desirable - who wouldn't want a quirky and intelligent child ?

I think the reason it's touched me so much is because I know in your shoes I'd be nothing like as good. I honestly don't know what I'd do :(

Ah I see what you mean, that is extremely frustrating for both of you.

It's a very vicious circle: he is lonely and wants to meet someone, he cant get a grip on his personal hygiene, you advise him but it goes in one ear out the other, and he is still complaining of loneliness and wanting a girlfriend.

I don't know how you would help him other than the ways you have already tried. But I'm glad you came on here to vent a bit honestly about it