to look for a line between autism acceptance and tolerating unreasonable behavior

[greenlegs]

DS13 recently formally diagnosed with ASD (possibly with a bit of PDA, tbc). DH and I likely both autistic too. We're both doing lots of reading to try to understand what it means, and to help DS avoid worst of being an autistic teenager.

DH tells me I sound like someone's old fashioned grandmother when I ask where we draw the line between encouraging him not to mask, to feel free to be himself etc, vs not validating being demanding, uncompromising, rude, lazy etc.

AIBU to think even though he's autistic he needs to learn to respect other people, including me?

Oh and for the record he's mostly very nice and overly well mannered. Do we just have to keep highlighting what is acceptable at home vs how other people are likely to react?

I agree with this, but I also "warm bath" it by making our home incredibly low demand/SEN friendly.

I'm raising an adult, not a child. I don't expect perfection but I do need to teach her to navigate through the world safely and effectively. Home is home though.

@LotsOfBalloons "we" as in the royal we ? Can you see how long this thread is ? I was responding to a poster. What exactly is your qualm with what I put ?

if a asd person doesn't have the coping mechanism to remove themselves from a difficult situation then some will be violent or hit out. If we just say they have asd and don't try to show them other methods of coping they will do unsocial things.

If you don't teach your kids where the line is they will struggle. You can say it's unfair (which it is) and understanding of ND is growing thankfully. But this is what worked for me growing up. All actions are communication. Helping people with asd actually requires education on both sides not just going they have asd and be done with it.As I said people are more than their diagnosis.

It's frustrating having to justify my opinion based on my lived experience with asd (which I said repeatedly was just my opinion) to NT people. And people don't seem to get how ironic this conversation is.

Think of autistic energy and effort like a bank balance.

Say you've got £15 to spend on dinner.

• £4 eating a dinner that has the wrong mouthfeel
• £8 fear of the unknown from eating a dinner that you have no control over
• £3 for all the social dinner rules you have to remember. Sit at the table, communicate, don't burp, don't slouch, don't zone out, don't use phone. Thank mum for a nice dinner.
• £3 the noise from someone else's show that is annoying you
• £2 trying to translate a joke so it's now echoing in your head and feeling like electric blue
• £1.50 trying to explain this to someone who doesn't really get it.

He's overdrawn his balance, he's gone into Fight, Flight, Freeze, Fawn.

He doesn't want to fight, he's withdrawn as his last attempt at self preservation.

We would if NTs wouldn't make this so hard and accuse us of being awkward.

I don't like loud noise (I have tinnitus so do need some noise ) and twice I've been labelled as awkward. Once because I refused to go somewhere because it was too crowded and I knew it was going to be noisy.

I was told at college if I feel it's getting noisy put my hand up and say something. She couldn't explain what I should do if the noise is too loud and I can't physically speak. I was apparently not allowed to just leave. But if I needed the toilet I could just go. That and the general lack of understanding from them is why I ended up never attending.

What coping mechanisms should I use in the above that doesn't inconvenience NTs?

Sorry candles I think maybe we're talking at cross purposes.

I am also ND and have ND kids and spend a lot of my life trying to help parents understand where their kids are coming from and understanding their world. I think we probably agree on more than we disagree! And yes educating NT people about ND is a passion of mine :)

@SouthCountryGirl I'm ND and I would have said your needs matter just as much as anyone else's.

I would have just walked off and left (cried migraine) which I know we shouldn't have to do but it's something NT get.

But then I also say no a lot to things rules imo work both ways. I have rules not just for my actions but others.

Ps that person you mentioned sounds like a arsehat.

Ahhh no need to apologise and I'm sorry too if I sounded aggy 💐

I find MN a weird place where I often misstep (but frequently don't know why)

We have a ND family and it's probably made me less exposed to certain elements !

This.

And yes to both of you. I recommend students in some of my groups say they "need the loo" if they need a break as it's a socially acceptable way of getting a breather if not around people who "Get it."

I have found it SO much easier as an adult I can just tell friends I don't do pubs with loud music for example - if they want to go that's great, I'll come on the next trip. Or there's times I'll say "I'll come for the first bit" and they know I'll leave if it gets noisy/busy. Once you have a set of coping mechanisms for these sorts of situations it's a lot easier.

Unfortunately though kids don't have these "Get out of the situation" cards on the whole. With long days at school and even in OPs situation where the child was removing themselves from the situation OP is still calling that difficult behaviour/being naughty. The child can't win.

I've changed job once I realised what my struggles were which has helped no end. And also accept I need a lot of down time. I used to be frustrated I couldn't "do" what others did or couldn't be the perfect version of myself I wanted to be but viewing myself differently has helped a lot.

But with kids there is SO much we can do to understand their particular triggers and issues and awareness around change and predictability etc that can make their journey to adulthood smoother. As well as teaching self regulation and coping mechanisms and knowledge of the NT worlds social skills.

And yes fab post disquiet 😁.

As well as teaching self regulation and coping mechanisms and knowledge of the NT worlds social skills.

This would have been helpful- I had a "eccentric" grandmother (which I'm pretty sure Is generations gone by code for asd) who taught me a lot that no one thought to tell me (because I assume it was just natural for them so it would be for me)

Genuinely think there should be some type of lessons kids can attend if they want to learn. I was lucky in my family but other kids aren't.

I read about a truly fab example of a group in school where autistic kids had been placed into a "social skills" group. There is always the assumption autistic people don't have social skills - they do, they just look different to NT social skills.

Anyway it had been approached that they were detectives out in the "wild" and each week and to observe NT behaviour around certain things and report back. I really loved this idea.

NT behaviour and social conventions often aren't logical to those who are ND so I love the idea of "learning the language" without making out your own language is "wrong."

thanks for the input, i am trying to learn, that's why i described the situation with the food. I thought it was an interesting example because there was no big meltdown (he did smash one of his favourite plates just the other week when rejecting another meal but that was due to a homework burden mostly). Yesterday I was a bit disappointed, sad and slightly annoyed/frustrated that he didn't eat the food. Mostly sad for him that i'd spoilt the dinner he'd been looking forward to. Also sad that the (expensive) food was wasted. It's hard to shake off the guilt around that. I got over it. If he'd been somewhere else I think most people would find it rude for someone to reject a whole meal, however calmly, without giving a reason.

Someone said it was good advice not to mix teaching moments with food. I hear you. I will bear that in mind in future. DS is an only child so usually has complete control over what is on TV (and most other things). DH and i watch things elsewhere on other screens if we want to. So I am also worried he has no opportunity to learn to share with siblings, and also that he doesn't have his horizon's broadened by exposure to other people's choices. I realise now though that having horizons broadened doesn't make sense for someone with ASD who needs the comfort of routine and familiarity. At least especially during mealtimes.

There's a lot to learn. He seems to becoming more rigid and more sensitive. Not sure if that's because of the trauma of secondary school and anxiety he has all the time now, or adolescence. We have an appointment with an OT trained in sensory integration issues and ASD next month so I'm hoping that helps.

There is a lot to learn. Be kind to yourself - you'll make mistakes, he'll make mistakes, there will be misunderstandings. I have also found my ds has got more rigid through the teen years - I think because the sheer number of things he has to cope with at school/with friends are increasing and pushing him to his limits Flexibility requires a lot of energy and low anxiety when you're autistic.

The work and teaching of these things is difficult and it's much easier for the parent to say oh they have asd and just ignore it and stick their head in the sand.

Why are you letting this child run you and your home?

@someoneisalwaysintheloo what do you suggest I do?
do you have much experience of autistic children?

I see my role parenting autistic DS very much like parenting any child. I support them with their strengths and difficulties, but I also want to instill a sense of care and consideration for others and to expect the same back.

That care and consideration can take many forms, so I don’t necessarily expect my autistic DS to show this in ‘conventional ways’ yet, maybe when he’s older. However I can see his kindness and care which can take the form of making sure I remember things, and everything is in order.

I need to show care to DS by realising what really upsets him, which is different to others. He doesn’t really care if I say thank you to him, but he does care if I don’t give him time to do his particular interests, or leave him alone, or if I say I will be 5 minutes - to actually mean 5 minutes!

In return I get exhausted with having to repeat phrases a lot, so I limit this - which does annoy DS but he’s learnt to accept it.

So we accept each other, and show care to one another. As the parent I do feel that I need to give more, simply because it is my job to help as he learns. So I try to show a lot of patience and tolerance, which I don’t expect back to the same extent.

However if I meet autistic adults I do expect a bit more depending on their capacity. I am not their parent and I only have a certain amount of energy. I do expect my relationship to be equal in terms of give and take, but I do try and see that there are different ways of doing this. I’m ND.

It’s a fair question though OP and one which is really important to debate and think about.

It’s good to have a practical example like this. In this case I would not have intervened in order to ‘make him more flexible’. If he watches a certain TV programme with food, then that is what he does. I don’t think it’s fair to ask him to change this. He’s not hurting others or not ‘not caring’ about others.

If you want to ‘broaden’ his ability to compromise, then I think that needs some careful thinking about and it has to be meaningful, real and something that is important for him to do now. Which is probably school - he probably has to do a lot of compromising there. Is he getting on OK at school? If not, I certainly wouldn’t be over burdening his coping at home - I’d be keeping home really ‘low arousal / low stress’ and helping him cope at school instead.

Do you have professional help to develop strategies?

Professional guidance can help you establish clear boundaries and expectations, with visual supports and social stories to aid understanding. foster independence, teach self regulation techniques, encourage social interactions.

It's a spectrum...it's not about what people are or aren't taught. It's about different autistic profiles and developmental capacities.

Guessing that's a no, @greenlegs, at least in respect of living with a child with a demand avoidant profile. Never ceases to amaze me how folks wade into this stuff with zero real insight into the realities of living in this situation but feel qualified to suggest other people's parenting is in deficit.

Compassion is key for you and your child - it's tough. And do not be afraid to lower demands at home. A diagnosis at 13 and the experience of secondary school as an ND young person is a lot to be coping with...

We struggled so much with this when DD2 was diagnosed and even before that. Her emotional outbursts were something else but finding a safe outlet for emotions has helped. She does kickboxing and is a brown belt now (although the other week she was sparing with a black belt and the instructor had to tell her to calm down so it's not a complete cure ). We also moved schools which has helped a huge amount as she actually has friends now for the first time in 4 years.
So while all children including those with autism need to learn acceptable behaviour, there needs to be some outlet for their emotions.
I try not to put too much pressure on DD. At 14 without autism I'd expect her to know that she doesn't have to like everyone but she must be civil . This is something we talked about a lot but kind resolved itself when she changed school. It sounds like your DS has learned socially acceptable behaviour which is good but I do hope he has an outlet for emotions, could be sports, music or art. He might not even need it but DD certainly coped better once she started kickboxing.

My DS did karate and sea cadets as a teenager, and I can see how those helped him.