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

He’s in his20s so I can’t force him into the bath or follow him in his car. I do tell him to turn it down when I am there obviously.

I hear you cracked

I sometimes feel similar with my ds who has ASD so you're NBU

I'd crack down on the music in the car - my ds isn't allowed to whistle in the car because I can't concentrate and it's dangerous. He still forgets but will stop if reminded. You have to be consistent and persistent.

We do the washing stuff by routine. He has to wash every day before bed. Needs to be reminded to wash all the sweaty bits. Never remembers to wash hair (because it's not every day) but he'll do it if reminded. I suppose I think of it as a war of attrition - I just have do reminding and cajoling until it becomes the routine, then he'll do it himself. Took us eight years to get him into the shower but now he refuses to bath.

The taking to strangers thing is hard. The social rules are really complex so it's hard to explain why it's ok to talk to someone you know about a book you like but it's not ok to walk up to random women and speak to them if they're (obviously) uncomfortable. It's similarly hard to explain why he shouldn't wander off with people he doesn't know/does know but is bullied by. On all that stuff I just have to actively parent - stay close and communicate "please leave the lady alone" etc. In my opinion (and I know this isn't universal for people in our position) his sn aren't such that they overrule others' needs and I end up cringing a lot when we're dealing with people who don't know him but if he can't do it himself someone (muggins) has to help him.

It's all just a monumental balancing act and only you know your kid well enough to be able to work out where to draw the lines on what is worth working on and what just isn't worth the effort.

I can relate, my brother who has short term memory loss often turns up in smelly and in dirty clothes. I keep trying to tell him but will only last until the next time. I tend just to take him to places where he'll stand out less.

My ds (nearly 9) is not autistic, but has a genetic condition which has many austitic traits, and sensory issues. I have days where I am hit by a wave of..."shit, this is never-ending".... as we have a meltdown, an awkward encounter in a cafe, a battle over washing or running off or screaming or....etc! Even with constantly using strategies to help support and enable, it is always a work in progress and new stuff always comes up. You can be teaching them from a young age....but it will always be on going!

I do think that lots of the time, society could pull the stick out of it's arse and be less judgemental and more accepting of the fact that not everyone meets some 'acceptable' neurotypical standard.

....sorry should add. YANBU and had you a cup of

I don't think you are being unreasonable at all. I'm sure there's a lot more context to your daily struggles than just this one snippet.

I'm in the same boat so cannot offer a mass amount of advice, just perhaps some reassurance that you are not alone.

I imagine you’d feel less embarrassed at him talking strangers if your ds were clean. People with additional needs are just people, who are a bit different from the majority and it’s ok for everyone to make conversation. As for the music, he can’t wear headphones while driving and the music shouldn’t be too loud.

Oh I hear you. Getting strange looks all the time gets boring, I know. We've had years of it.

There are things you can do tho, fish dirty clothes out to be wedged, D's likes to 'recycle' outfits too but will turn a blind eye to me sticking them in the wash.

The music thing, say no. It's makes driving unsafe.........show him some literature relating to this and work on different options. If he doesn't want to get on board then no more cars.

Yes. Life is challenging but there are ways around things so the smaller issues don't seem as big

Washed, not bloody wedged 😂😂😂

I hear you, my son is 9 and I’ve long got past the embarrassment of people looking. He wears ears defenders meaning he yells everything, has a compulsion to line everything up wherever we are, usually shop shelves that aren’t to his liking and has all the usual social awkwardness and quirks.
However I’m his mum and I will tell him he is too loud, I’ll make him have a bath and I’ll parent him. I will do that when he’s 20, 30, 40, whatever age he is until I die because he is my responsibility and although I understand how hard it is I do think it’s up to you to tell him the music is too loud, say ‘come on’ or distract him if he’s talking to people who don’t want to be there and to ring up and say have a wash/cut your hair/brush your teeth if you can’t physically get to him to remind him.

@Acis I know that hence why I said that the clothes and things she's stuck with. The rest actually can be overcome with parenting techniques. Might take until they're 30,40,50 but it will happen. I should know, the majority of male family members are autistic and so is my son...

With regards to cleanliness and the music you need to try and make firm boundaries. I have an autistic teen who sounds very much like your son (people always assume social difficulties mean they don't communicate with others!) and they are forced to clean themselves or devices will be taken away.

I don't think YABU however you need to let go of the embarrassment because their behaviour is not the social norm. That's not their fault and as soon as I accepted it I felt much better. Who cares what others think? Is your child happy and being himself? That's all that matters. Not a strangers opinion.

But it's in his best interests to tackle the cleanliness and being rude to others regarding the music.

I have two children with autism, so I sort of get where you're coming from but the are still young so I realise it's different. My BIL also has learning disabilities, he clearly has autism but in the array of things that are wrong with him and his age (he's over 40) he was never officially diagnosed. I find him difficult, mostly because the family don't correct him, he will write wildly inappropriate comments online and share things he shouldn't, he doesn't wash, his parents still go and wash him, cut his nails etc. I think it's made me stricter with my own children, but it's so much harder To enforce rules on an adult.

He drives then? I think there is little you can do in that circumstance than other than point out if he had an accident that the police could maybe do him for not paying due care and attention because of the music, and mention his hearing but otherwise, I guess his behaviour impacts less on those around him. He can of course wear what he likes and chose not to wash etc, but you don't have to have him in your home or go out with him if he chooses not to be clean.

If he's able to drive, can he work? If he's not working is his personal hygiene impacting on his ability to get a job?

Sorry OP, I know it's tough, one of mine is obsessed with sheep and very tactile, he will rub his face and body on soft things and talk endlessly about sheep to random strangers, if anyone pays him attention he runs and hugs them, he's 7 so we still just about get away with the cute aspect but it's not going to last much longer and it's a constant battle to try and reign it in. My other child is just anti social and angry, so we have to deal with lots of meltdowns and sensory over loads, which obviously evokes others reactions from others. It's hard, it's gotten a lot easier over the years and thankfully my skin has thickened, but I find myself apologising constantly for my children when I'm out, it's hard to balance teaching independence and yet also managing behaviour/sensory needs etc.

OP you have just described my 28 yo DS. I will tell him he smells but it doesn't seem to make any difference. Like yours he wears tracksuit bottoms and large hoodies, and usually his shoes are falling apart.

He is also incredibly loud and has opinions on everything. Unfortunately they are never popular opinions, so he makes enemies quickly. He is also never wrong

TBH you won't change him, so really this is your problem and not his. My DM never made any secret of how embarrassed she was to be seen out with me DH and our DC when they were very young, and it's hurtful. What does it matter what other people think?

Worked on learning disability teams...so what worked...sometimes.

What is important to them and link it with the behaviour. ..

--Point out consequences. ..repeatedly. ...any potential gf won't want to speak to you if you smell

• you won't be able to keep a job if you don't wash as people don't like smelly environments .etc etc...

Work out lists of ''rules'' that need to be adhered to;

They often can become habitual...

Eg;

The volume of the stereo must be less than x,as it's too loud for our nice neighbours!

We ALL wash our smelly bits EVERY day .one recalcitrant 20s adult male thought it was ONLY him that had to do this boring task...when he realiseD that mum and dad ajd sibs did this utterly boring task he did eventually make an effort to wash. ..we encouraged that he used the bathroom at a similar time to his dad/brothers so he could see it was not 'just him'.

I would get rid of the manky badly fitting clothes and go to Primark and buy a new supply. If you can afford it you could even get 7× trackies 7× tshirts 7× hoodies so he has a clean set everyday.

Sorry I've just realised his age! So you prob can't use the same strategies I use. Sorry, it's not helpful but you just need to try your best and accept things as they are x

I feel exactly the same and I'd chop off one of my limbs if it meant my daughter was free of this life long disability.
It has ruined her childhood and ruined our family. Nothing can be planned or even enjoyed in a manner that most parents take for granted.
A day of making memories which is supposed to be what childhood is about us invariably littered with sensory overload, triggers galore and meltdowns.
To be frank, it's shit. Nothing will ever convince me this is a 'mere' diverse way of thinking.

Nor me claire

And everybody saying that it’s just boundaries and I should “just tell him” or “just buy him” - LOL.

I have been begging him to shower since Friday. He won’t. He says ‘yes okay, in a minute.’

Hygiene is an ongoing and desperate worry. He has no self care skills at all and I promise this is not me. I have always had daily baths or showers, usually twice a day or shower / wash.

He washes his face but that’s IT. His version of a shower is washing under his armpits.

He is currently spending most of the day watching horror movies so I can hear people’s tortured terrified screams most of the day. To give an idea of volume I have the television on between 22-29. When I turned it on yesterday after DS had been watching it, it was on 64.

It is really impacting on my mental health at the moment and yet he can’t just be left either.

I have an autistic relative like this. It sounds counter intuitive but his mum had him move out into a flat of his own and local mental health services support him. She does all his admin, bills etc and the financial impact is minimal because his condition means he gets disability allowance and council housing and he gets support in the community.

Could this be an option to explore?