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What to do about DS (18) - he's terrified of the world

16 replies

Schoodle · 02/04/2025 15:42

Sorry if this is long. DS has been referred for an ASD assessment but still waiting (via Right to Choose) and struggles massively with anxiety and social interaction. He started at uni in September, which was a huge thing for him, but he didn't manage to speak to anyone. He stayed in his room, only coming out for lecturers and then waiting until none of his flatmates were in the shared area before rushing back into his room, and surviving on cereal bars so he didn't need to go into the kitchen to cook. He came home every weekend and started dreading going back.

We managed to get him moved into a studio flat so at least he could cook and eat properly, but this didn't help and he started feeling more and more down and lonely. He struggled to motivate himself to get any work done and left it all till the last minute, and wouldn't ask for help from anyone the DSA had put in place, or any of the support services at the university. Despite that, he managed to actually do really well in his first assignments as he's very bright, but after his first semester he decided to defer until next January as the stress was too much.

So now he's at home, and we let him rest as we thought it may have been autistic burnout, and he was probably exhausted from being constantly worried about everything. We've got him into a routine where he is up and showering every day, which he hadn't been doing, and the GP has prescribed Citalopram. This was a couple of months ago and he seems much brighter, but I think that is partly because all the pressures have been taken away. He's fine at home, and I've got him doing all the chores around the house while we work, which is great, but anything outside of the house he just can't do.

He'll buy something from a shop if it is self checkout, but not if he has to speak to anyone. I've tried to get him to come with me to a particular shop so he feels comfortable, and only really needs to say 'thank you' when paying for something, but when it comes to doing it on his own he just freezes and can't do it. Same with when we've seen the GP - he just can't/won't speak to him, I have to do the talking. He's been seeing a therapist for nearly a year and we've had to stop as he didn't engage with it at all - just said the absolute bare minimum to get through the session and didn't even try any of the suggestions, even just breathing exercises.

I can't imagine him being any different when it comes to going back to uni. We think he should see if he can transfer to the local uni which does a similar course but he doesn't want to as he says it isn't as good, or to commute but he doesn't want to do that either. He isn't anywhere near the stage of being able to get a job or do any voluntary work as he just can't speak to anyone he doesn't know so he wouldn't even be able to go into an interview. He's even worse on video calls - I've had to do all the sorting out of his uni deferral as he can't speak on the phone or on Teams.

He's not even speaking to friends any more - he used to at least do gaming online with them, but that has stopped because he said he doesn't want to tell them he's not at uni any more. When he was at school he was always quite anxious and shy and didn't have many friends, but he had some, and he saw them outside of school occasionally, but now he's just completely isolated himself.

I just don't know what to do, and just feel down and worried about it all the time. Feel as though we've massively failed at managing to raise a child. I'm exhausted.

OP posts:
parietal · 02/04/2025 16:03

That is very tough. i'd look up treatments for social anxiety as the primary concern - social anxiety is very treatable and can be massively improved with the right therapy. If talking therapies aren't working, something like art therapy might give him an opening.

as a start, keep getting him to come to the shops with you and to get out of the house and go for walks etc. if there are any local hobby groups you might be able to do with him (e.g. bird watching or train spotting), that could also be good. don't put any pressure on him to talk, just let him hang out in places where there are other people around too.

Schoodle · 02/04/2025 20:22

Thank you. I'm definitely trying to get him out of the house even though he's so anxious. He won't even talk to me in the street if there is anyone anywhere near by.

With therapy he needs to want to do it, and I don't think he's at that stage.

OP posts:
Bigpaintinglittlepainting · 02/04/2025 20:29

My dh struggled with social anxiety and honestly it's wasn't until he had no choice that he deal with it.

You are providing every single safety net possible so that he doesn't need to stretch himself.

Schoodle · 02/04/2025 20:33

How did you get him to deal with it @Bigpaintinglittlepainting ? I swing between thinking we're far too soft on him to thinking he genuinely can't help it and pushing him into something will make him even worse.

OP posts:
Bigpaintinglittlepainting · 02/04/2025 20:36

I understand the fear of making things worse but you can start small.

I just said to my dh I'm at the end of my tether and things need to change. He didn't see it in himself.

I think you could try by sitting down and setting him tasks to do by himself. Not with you, and he can do them in his own time. And build up to being more independent.

IdrisElbow · 02/04/2025 20:38

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madroid · 02/04/2025 20:44

Does he see it as a problem himself? If so, what does he think should happen?

If not, it's because you are enabling him (that's not meant in a critical way, you are his mother and love him!) BUT he must see that it's not sustainable to rely on his parents all his life. I think I would focus on this becoming his problem not yours, then he will hopefully make an effort to engage with help.

Aliceisagooddog · 02/04/2025 20:44

You sound like a very supportive family. The diagnosis may help access more help. Does he have any passions/interests? Can he talk to some types of people, like family friends or younger people, just to gauge where the issues lie.

Schoodle · 03/04/2025 15:12

Thanks all, he knows its a problem himself, but he can't or won't do anything that he knows will help. Anything, even tiny things like trying a meditation app, or writing a list of what to do today, he just won't do without me constantly going on at him, which I can't keep doing, but I don't know what else to do if he isn't taking responsibility for helping himself.

He was interested in juggling, but he's not done that for ages - all he does is watch videos on his phone or gaming on his computer - I hate it because it know its not helping. That's why I've got him doing chores around the house - he's currently cleaning the windows!

He'll speak to his grandparents - but will still be nervous about asking them about anything he's not sure about. And he'll speak to family friends if we're there, but only in a very limited way as to not completely ignore them.

OP posts:
parietal · 03/04/2025 16:28

There are organisations that do befriending for people with autism. Meaning a volunteer comes to chat with an isolated autistic person. That might be useful if he can access it.

rbe78 · 03/04/2025 16:58

Would he be up for trying BetterHelp? They offer therapy via messaging, which may be less confronting for him than speaking to someone.
https://www.betterhelp.com

Maitri108 · 03/04/2025 17:06

He's got a phobia and the problem with phobias is that if you don't challenge them, they can take over your life.

How is he meant to have any kind of independence if he can't communicate? Usually you have CBT and exposure therapy to deal with phobias.

The Autistic Society, Anxiety UK, Young Minds and BACP may all be useful.

AnditlookslikeImtheQueen · 03/04/2025 17:10

I was the same. I am still like this. I do not go out ever on my own. Can only go with dh. I can’t speak most days . I am not functioning. As a teen I was given extensive CBT and exposure therapy (it bordered on abusive at times ) and that made it worse so I would advise don’t try exposure therapy.

plinx · 03/04/2025 17:18

This sounds very hard and my heart goes out to you and your son.

When my autistic DS was that age, he used to go to a volunteer group for countryside maintenance (clearing footpaths, stuff like that) sometimes. It was very good for him because the focus was on the physical task, not on social interaction. So he was able to work alongside people and maybe join in a chat now and then if he wanted to. But he didn't have to (I warned the organiser that he had ASD and might not be one for small talk).

Is there anything structured like this which might be helpful to your son?

Obviously it might be too big a step to do all at once. Getting him out in nature for longish walks might be a way to start. And/or litterpicking or similar. I think it builds confidence when people feel they are doing something useful in the world (so giving him chores sounds like a really good idea of yours).

plinx · 03/04/2025 17:20

Just to add - maybe he could help his grandparents in their gardens (if any)? That might be a way in too. Being outdoors, moving around, and feeling useful are all excellent for mental health.

HollyBerryz · 03/04/2025 18:23

Does he have selective mutism op? SMIRA is a good source of info.

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