To get so embarrassed by ds with autism?

[ncmay2019]

Please don’t flame me.

I need to get it out. I obviously love ds dearly and whatever his faults may be, linked to autism or otherwise, he is a loving, generous, kind and fundamentally decent young man and I know that is what is important. But his ‘public’ behaviour is hard to handle.

He likes music but hates headphones so will have music on at ear shattering levels in the car, which is awful for me and horrible if we end up in non moving traffic.

Dresses so inappropriately when out and about, huge and often dirty hoodies and baggy tracksuit bottoms. I’m not exaggerating, he often looks homeless. This is made worse as he doesn’t shower regularly (he hates them) and he has wild hair as it is not short but because it’s quite curly it grows upwards and sideways rather than down.

He’s so LOUD and often talks about completely inappropriate things - he saw a gentleman looking in the politics section of a bookshop a few days ago and started asking him what he thought about brexit, he also approached a girl who was a university student with a book by his favourite author saying she should buy it, how it had transformed his life. She was obviously uncomfortable and it was horrible. On the one hand he was only trying to be friendly but it does unnerve people.

He has no spacial awareness and walks into people / knocks into children.

I feel horrible as I dread going to places with him

I'm sorry, but you're being unreasonable. As his parent it's your job to teach him not to do these things. You should have been teaching him from a young age. But it's never too late to work on it now, apart from the clothes thing, that you're stuck with

I'm so sorry and didn't want to read and run. Sounds difficult for both him and you. I have ASD and it led to many other MH problems at Uni, probably because I didn't know how to be appropriate and that made the world such a scary place for me. Think it will be similarly scary for your son, but this is so hard for you too. Can you speak to him regularly about what is considered appropriate and what isn't, in a kind, loving gentle way? Others might disagree with me, but I think it's much better being repeatedly and kindly told by someone who loves him, than facing the cruelty of strangers who don't understand and will be mean?

Also - maybe I am weird, but I actually wouldn't mind if someone came and started chatting to me in a bookshop, especially if they had ASD or special needs. I get that the girl was uncomfortable though, and his inability to read that is problematic. It's so hard for ASD people though because body language can be like an alien language. Happy to chat more if you want to PM me.

I have queen

How old is he?

My son has autism as well so I know it’s difficult. He’s going to have to learn some socially acceptable behaviours even though they don’t come intuitively to him.

I have no idea why you tolerate the music though. I certainly wouldn’t. Being autistic isn’t carte blanche for doing what the fuck you want regardless of the impact on others.

It's an ongoing job, you don't just stop because you think the tasks done, it's just a matter of finding the way that he communicates best

Do you have adult autism teams where you are? They might be able to give you some pointers?

No, I don’t think you’re being unreasonable. You’re a parent who loves their child but you’re also an individual who experiences human emotions and you have just as much right to accept and acknowledge them as anyone else does.
I don’t have a child with special needs or a disability so have no idea how I would parent in such circumstances. But I imagine some of those behaviours you have described, yes I would find embarrassing too, however much I loved him. My children’s behaviours have embarrassed me on occasion, none of us are immune.
FWIW, if I was on the receiving end of the behaviours, they wouldn’t bother me, I think I’d probably realise where they were coming from (think most people would, except possibly youngsters like the girl you mentioned who don’t have as much life experience) and understand.

Why do you tolerate the music thing? People with autism can still be told “no”. I wouldn’t allow that at all, autism or not.

I’m in the same situation ( to a lesser extent now). DS has to learn to fit in better.... it’s super hard. Maybe you can get help? You can self refer now to the NHS for various therapies OT MH S&L Physio. Tell him straight that he doesn’t have the right to inflict his noise pollution on others. How old is your son?

YAB both R and U.

The music thing is unacceptable. The choice is either headphones or low volume.

The clothes thing is his choice, though it's reasonable to say "I won't go to this upmarket restaurant with you in dirty jeans/I don't want to go to the cinema with you because you smell bad". It may (or may not) be worth explaining to him how people may look at his clothing and make assumptions.

The talking to strangers again is not so terrible, some people are extrovert and some are not but he's not hurting anyone. You might try explaining to him that looking unkempt may make people wary of him and why.

He likes music but hates headphones so will have music on at ear shattering levels in the car, which is awful for me and horrible if we end up in non moving traffic

This isn’t acceptable. Are you the driver? You have to feel comfortable and able to focus on the road otherwise you’re a danger to yourself and others.

Nip that one in the bud immediately.

It’s hard isn’t it. He sounds quite able though (from some of the chat you describe) so there’s hope!

Either he needs to learn by schedule or repetition about some of these things. Washing daily (or at least every other day) - sink and flannel fine; clean clothes every other day. And when he goes on about ‘why should I /doesn’t make sense/ other people’s rules etc etc you can say ‘you want me to take you to X so I require Y and so will your friends/ colleagues etc’

YANBU. Though you may get more help/an easier ride/ better advice on the SEN board.

I have an almost adult son with autism. He has long hair and dresses eccentrically. That's his choice. However I insist that he showers every second day and his hair must be clean. I wouldn't allow loud music in the car; it's my space too. I wouldn't worry about the other behaviours but I would call him over or have a code word which means "we need to move on, this person isn't enjoying this interaction".

He is autistic but he can still keep learning with guidance.

Sorry for the length of this one. I think I just start and don't know when to stop!

I agree it can be embarrassing (my oldest ASD son is 17), but there is hope. If it's you driving in the car just say no, too loud and don't put the music on. If he's driving, driver picks the music

My son also insists on joggers and hoodies. I get round it by buying him ones I like. If they're too big, "accidentally" shrink them in the tumble dryer!

My son insists on cuffed bottoms but otherwise it's whatever I buy. An idea might be to try and get him some tracksuit sweat shorts instead? My son will wear shorts whatever the weather (something to do with processing heat and cold which is a common ASD trait along with SPD) and he's known for wearing shorts and hoodies. In typical ASD fashion, he doesn't care. If not, learn to love the comfort he's feeling - which is more than the rest of us do when we're picking appropriate day wear clothes..

When it comes to the showering, my son also doesn't really and he dislikes it however he has nocturnal enuresis so it can be a definite issue. I get round it by having a bath and leaving it in for him (no advance warning) or by asking if he wants one and running it with nice bubbles etc and getting the towels out. Once he's in there I'll ask for washing, on the rare occasions the washing basket is empty I'll ask him if he has any and to pop it in when he gets a minute. It doesn't always work but it gives him autonomy on his own washing, means if his stuff is wet he doesn't get so embarrassed about it and also he knows how to use the washing machine so can't be bad! I'll also ask him to put a load on for me when I have a half load, and ask if he can find anything of his to make it up to a full load (he's totally doing me a favour then)

Talking to people and being inappropriate.. my son is generally the other way and quite shy but he does talk to me generally fairly loudly (when he's trying to be quiet) and doesn't really "get" what's appropriate and what's not but I just say "chill your beans" or "don't say that in public" and make a joke of it. He thinks it's hilarious - I'm not embarrassed by him at all though, I don't really care what other people think of any of us (we have a large family, bit of a rabble, 3 cases of ASD and counting and one DEFINITE case of PDA).

To send a PP, I'd love if I was in a bookshop and someone started talking to me about a book I was looking at etc. As would my fiancée who I've just spoken to about it

I think the main problem is that embarrassment is subjective and what some people find embarrassing others don't. Your son is obviously oblivious to any embarrassment he may cause so just let him know that it's inappropriate or whatever in a gentle tone and remember you're there to have his back. If anyone says anything, you have his diagnosis to fall back on - it's your job to make sure he's happy, don't worry about anything else. And if you do, I'm sure as he gets older it will get better, even ASD kids can change with encouragement and enough time.

for you, it's not the easiest thing in the world to navigate but let go of the reins a little and you might find it easier on you

Some things are reasonable, some unreasonable.

Do you have support? Have you read much on autism and how to help with things like the loud music? There are things you can adapt and things you can’t. You are the parent though, so you must learn more, try and access support and work with your son on the unacceptable aspects and learn to accept him for who he is on other aspects.

The music and the not washing need addressing but the talking to strangers isn't such an issue, he is probably just trying to be nice.

You are allowed to say no to people with autism. Turn the music down and tell him that's how it's going to be.

Don't be silly, Queen. You can't overcome autism by simple parental teaching. The issue with showers and clothes, for instance, is a sensory one.

OP, does your son have an EHC Plan?

My son is a bit younger but it’s getting to the stage where I’m having to try and teach him social rules etc. Which is incredibly hard if they aren’t something you have ever really thought about before. We’ve been using this book

www.amazon.co.uk/Asperkids-Secret-Book-Social-Rules/dp/1849059152?tag=mumsnetforu03-21

I really recommend it for helping them to get their head around social rules. It’s written by a woman with autism who frames it as the things she wished she had known growing up. The whole ethos of the book is that you shouldn’t pretend to be anything you’re not but when you do X people who are neuro typical will think Y you can either change your behaviour or accept that is the message you will give out. Might be worth a flick through, it’s geared towards tweens/teenagers.

No judgement and plenty of sympathy here, it’s so hard and there is no real help for you after diagnosis!

This is one of those things that parents of disabled children often have to deal with as their children become adults, and all of a sudden the tolerance other people had for them because they were cute withers away. I do sympathise. It’s a really horrible place to be in because schools really don’t prepare non-mainstream kids (or their parents) for what happens after school.

How old is he?
I don’t think it’s unreaosnable for you to explain the music upsets you. Also depending on age, could you just wash his clothes? I’m not an expert though, have children with sensory issues and some Asperger traits, but they are younger I suspect.

Op there was a thread in the last couple of weeks about peoples mental health being affected by this kind of thing. Im a few years behind your situation and the music thing really really gets on my tits

I don't know enough about autism to offer advice, but I do know that it can be difficult to navigate the social world (depending on the type/level etc) based on what I've witnessed.

I just want you to know that I take my hat off to you. Be kind to yourself. You are doing the best you can.

I don't think yabu. It sounds exasperating and you're only human and therefore will have a range of emotions. Bizarre how PP consider your embarrassment at your son's conduct to mean that you're not committed to loving him with all his foibles.

That said, do you have any additional support with your son? And how old is he. It is bloody exhausting - given you always have to be switched on and hyper-aware of the situation.

Op, I completely understand. I have a son on the AS also and we have similar problems, particularly with hygiene. I have spoken to him and tried to show him and explain WHY it's so important, his dad too.. on a regular basis, but it's an ongoing issue that never resolves ( and he is 28 now). I will die worrying about him, and that breaks my heart. Not what I would have chosen for him or us. I feel powerless, exhausted and hopeless if I am honest.