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 work with ASD / ADHD children. I know I have it and suspect my boys have it too.

I think you're right and from my perspective I can definitely tell when a parent has made an effort with a child and when they haven't. It's not that the child should feel like they have to mask it's more that with the right help they can be the best version of themselves.

Remembering to be polite and generally making an effort with the people who are helping them is the only expectation I have.

It's something everyone should work towards though not just autistic children.

I usually avoid commenting on posts like this because I feel anything I contribute will somehow be ‘wrongly worded’ but here goes…

Given he’s ‘recently’ diagnosed at 13 I would suggest making small allowances but largely continuing as normal. If he’s got to 13 without diagnosis he’s not the type of autistic who needs massive significant allowances made. I say this as an adult who has realised (and had it suggested by multiple professionals) that I myself have always been autistic and wasn’t picked up.
Meanwhile my DS was diagnosed when he was 2. He is totally non verbal, hasn’t a clue what’s going on around him. It was OBVIOUS very early and he can’t even use a spoon unaided. He’s about to go to school (specialist) and would never manage in mainstream. The concept that he and I may have the ‘same’ condition seems preposterous. He needs a lot of allowances made for him.

In your shoes I would be pushing DS to the highest level of functional within society he can comfortably achieve.

@MargaretThursday My son said the same thing. He was diagnosed with ASD at age 7, and ADHD at age 8. He is - I know it's not popular terminology - 'high functioning'.

I told him that his diagnosis explains the things he finds difficult, but it also gives direction for the areas he needs to work on. I told him that, for example, he is very academically clever, whereas some children need extra support, tutors etc. But for those children, socialising may come easier, so for my DS he needs support with his social skills.

OP, I think we must do our best as parents to get them ready for the world they will enter as adults one day.

*That works both ways though. If an autistic person isn't shown tolerance, understanding or patience why on earth would they accomodate your needs?

There is a lot on this thread about the need of people with asd to adapt, with very little recognition that they do this all the freaking time and need spaces where they can be autistic. That might involve not talking, or not spending time on the phone to granny, or not say thank you for things they don't like and didn't want in the first place.*

This.

Would you all be telling a physically disabled person they need to learn to fit in physically by moving the way other people do as it's better in the long run if they don't cause annoyance or harm with their wheelchair?

People communicating with autistic individuals need to take responsibility for their own communication styles and the environment and sensory experience they are creating in order to meet these individuals at least half way. So many meltdowns are due to neurotypical people not being responsible for their impact on the individual then blaming them for their reaction.

We are a family of (back then) aspies. Only the youngest has an autism diagnosis because by that point they no longer diagnosed Asperger’s.

I think the early that we try to instil the rules of society the better.

There are things that I’ve found easier to instil, for example manners, they’re non negotiable and pretty simple, if you want, are given, shown a kindness or offered something you say please or thank you.

Then there’s things that I’ve found more difficult like the observations. Look at that big tree, isn’t the same as look at that big lady. I try to teach tolerance and understanding and that not every difference needs to be proclaimed loudy but everything is open to discussion and questions are good but quietly if it’s about strangers!

It’s not wrong to notice difference at all, but it’s doing a kindness to some people who don’t like having their differences pointed out if you don’t raise them publicly.

As for behaviour, the consequence has to fit the crime and it needs to be quite timely. Eg I found that if it was drawing on the wall Monday and you say they can’t go out Saturday it’s lost all relevance by that point. Rather better to clean every wall in the house immediately. Oh and also never threatening a consequence during a melt down, more a discussion afterwards, but mine - all grown up, have all been grounded, lost pocket money, had technology removed, extra chores, you know the general ways in which a lot of people discipline their teens!

I think the only way in which discipline would have been different if they were NT is that it would probably have taken less patience and less explanation, so I think time and keeping calm were really the largest factors with discipline and that’s just really to clarify understanding.

Autism is an invisible disability. Our ND children will come into contact with people who do not know that they are autistic. They need to be able to function in the wider world, even if that means sometimes masking and later finding a safe way to self-regulate.

Do we just have to keep highlighting what is acceptable at home vs how other people are likely to react?

Yes.

YANBU

I didn't get the impression that OP was talking about meltdowns. Rather other people's choices to spend time with an autistic person.
And given that 20% of the world's population is estimated to be neurodiverse (diagnosis aside) you can't assume that it's all the fault of neurotypicals.

I have ADHD, married to an autistic man, with several autistic exes. A disproportionate amount of our friends are similarly ND.

Not saying thank you is a minor issue. But some directness is unpleasant - like an acquaintance I had who always had to point out something wrong with my appearance (why is your hair like a bird's nest?) The guy in DP's video game group who insisted on his way or the high way in every single game.

It isn't the NT's who reject these people. It's everyone. Including other autistic people. Except for maybe the few who 'click'. If I take a rough poll of the neurotypes that have stressed/annoyed DP it's actually 50/50 NT vs 'other' (and out of the 'other' about half are autistic).

At school you can tell people to play nice, invite everyone to class parties etc but all that stops when you're adults. You can't force people to be friends with those they don't get on with.

What's your solution?

I used to be a member of an adult autism support group. (It was made clear its not an alternative to therapy but to meet people, exchange advice, etc)

There was someone there who'd constantly message me and whine if I didn't reply. I didn't want to talk every day. He said I was a shit friend for wanting space. He basically said (and I was told this when I went to the police) that he has Autism and he can do whatever.

I raised my concerns with the group leader. I was told that a few people had raised concerns about his behaviour. They kicked him out because they didn't feel they could support him in the way he needs and it was clear a few of us weren't comfortable with his behaviour.

Also 'DH' not DP... we just only got married so soz for forgetting

I don't think being rude, lazy or disrespectful to your mother are autistic traits.
So I wouldn't tolerate any of that kind of behaviour.
I pull my sons up (ND and NT) on any behaviour like that.

All autistic in our house.

We have one overarching rule, which we all agree on. Adults as well as kids, and what we'd accept from other people.

We don't make peoples lives worse, including our own, unless we absolutely have to.

It leads to a lot of debate - there's a LOT of grey in that, but it covers bullying, rudeness, maintaining boundaries etc. so you don't have to accept a hug from grandma but you do have to be polite about it. Unless she has proven she won't accept your boundary, then you can be firmer. That could count as an "absolutely have to"

Mine are young, 11&8 but emotionally younger, so it's plenty for now.

Oh, and masking is complex. It can make life easier, but we're always clear about it - we call it "cosplaying neurotypical" and all accept its only for when we need to use it.

Honestly, being more obviously autistic is a good way of weeding out people you'd have to lose further down the line anyway.

Thanks for all the responses

Here's an example from this evening - I gave ds a choice of things for dinner, cooked the one he asked for. He likes to eat watching tv, but he insists on watching a very small selection of programs. I asked if i could choose something for a change, he let me and thanked me for cooking such a nice dinner. Then insisted he could not possibly watch my choice of tv while he was eating. I turned it off, perhaps a bit too slowly and made a joke referencing something we'd laughed about two days earlier. I think he found the joke inappropriate somehow but not sure. He left his plate 90% uneaten and went to his room and refused to come back.

It's annoying to cook for someone who then decides they won't eat it. It's happened a few times recently - usually because of some quality of the food, this is the first time he's refused to eat something he was enjoying.

Any suggestions here?

Pick your battles would be my advice.

My kids turned their noses up at my cooking for over a decade. I took the view that it was my responsibility to cook healthy meals for them, I always made sure there was something about the meal each of them liked but that was it. I didn’t even watch what they did with the food. They were required to put their plates in the dishwasher and that was that. They didn’t like to be controlled and are pretty demand avoidant so keeping demands low is something that works best for us. Out of nowhere they now eat anything.

The TV thing is difficult DS only watches the same selection of stuff, very young children cartoons aged preteen, so very few things anyone else is interested in. We have more TVs in the house and rarely watch stuff together only when we sit down together for movie nights.

You can’t make him eat.

he wasn’t rude, he didn’t criticize your food, he was uncomfortable and removed himself from the situation. He did nothing wrong.

if you know that eating and watching a shortlist of programs are linked, then trying to push that seems an odd moment. It might have worked better to say, let’s watch your choice while we eat dinner and then my choice after (or while we have dessert) if you needed to use it as a teaching moment. However, I would advise never mixing teaching moments with food if at all possible. It’s just too stressful.

I don’t think this is rude tbh. Little changes like this could also have put my DCs off their food. Environmental change, texture change, taste change etc would all impact what would be eaten.

I wouldn’t have personally ruined the routine and watched something of my choice. As priority would be getting the DCs fed.

On the spectrum with a late diagnosis.

Some behaviors aren't acceptable and must be taught.
Not saying it is easy though. It can be done over time.
I feel it's not respecting your child to treat them as incompetent.

My quirks are never tolerated by my family. They aren't anything agressive or violent. Think, mostly thinking out loud but somehow I'm seen as defective and some doctor needs to therapy it out of me iyswim.

Balance is key.

Basically NT people don't want to be inconvenienced in any way to accommodate to someone's disability. I'm deaf and on the spectrum and people will treat you like garbage. I'm expected to just ducking hear and act normal damnit! Some really do seem offended by disabilities.

My son’s paediatrician told us that emotionally autistic children are about 33% younger. He said that if I treated him accordingly in every way, like he was the young we age, the tantrums would ease it worked!

I think the bottom line is people including children, have to be likeable for people to want to spend time with them.

If children are aggressive, controlling, demanding people will soon withdraw and then the child will end up isolated.

I have an instance of that in my own family. Child with ASD utterly indulged and never redirected, every whim catered for. Becomes very violent (towards anyone) as a means of getting their way and now the parents are upset that their family and friends don’t want to spend time with them. It’s a safeguarding concern with younger children too. But the parents have never attempted to mitigate any of this and people quickly lose sympathy when they’ve been punched etc and their children at risk.

Now an element of that might be unavoidable but it’s really difficult when you see parents not engaging with services etc and not attempting to mitigate that behaviour.

My dd is ASD, age 11. Recently diagnosed and is high functioning (I don't know what the appropriate term is for this, no offence intended). She is an excellent masker. Only to a very keen eye would anyone outside of the house know something was different about her. So much so I've often felt like I've been making it up.

I agree with pp about having hills to die on. I think I'd like to say in the house she is expected to not have her asd traits impinge on others but the reality is they do. I think we're probably lucky that violence is quite rare but she can certainly bring the family to its knees with one facial expression which tells us all the next hour or so will not be fun. I'm still learning but I do choose which bits to berrate based on various factors : are the other dcs home and do they need me for anything right at that moment? Are the signs there that if she's left to her own devices she'll self soothe and come out of her 'zone' of her own accord, what time of day it is (if we're due to leave for school I'm less tolerant) and then really I just ask myself if she's left doing what she's doing is it really the end of world?

I think about this a lot. There's so many times I'm trying to work out what they need, does this behaviour mean they need support or is this nothing to do with being Autistic and masking and is it something they need pulling up on. Some things like when there's physical violence involved it's flat out that's not ok. I'm constantly scaffolding so they can do what they want and cope out in the world. They need so much and specifically from me and I am burnt out and struggle with it all. Home is a safe space absolutely, but it needs to be that for everyone.

It's hard for me to balance the competing needs of 3 Autistic children. Being burnt out, in constant pain and probably ND myself doesn't help. The line and their needs shift, I can't always find it, sometimes I'm too tough and then it turns out what they needed was more support, sometimes I let too much go and I realise that later too. Both scenarios I blame myself for still being befuddled by things like this. It feels like I'm failing them not knowing what they need all the time. I don't always know where the line is, there's some absolutes but mostly it's me desperately trying to work out what the hell they need and feeling unsure that I'm doing the right thing which ever way I go

I have 3 autistic young adult children and they have always been praised for their good manners. I do not tell them to mask, but I do explain what reactions they may get from outsiders if they behave in certain ways. I also tell them that ultimately, if others have a problem with it then is their problem, as long as they are not hurting others and/or infringing on another person's personal space. Hurting and disrespecting others is not how they would wish to be treated so is not acceptable. I do usually let it go if they say something in anger or frustration to me, confrontation when they are overwhelmed is never going to help the situation, they usually apologise later unprompted so we discuss their feelings then.

Autism should never be used to excuse bad behaviour. It is our job as parents to teach them how to embrace their autism, accept the strange but also become a member of a social society in a way that SHOULD be acceptable to all members. And I emphasise should as I don't really care what the many think is 'socially acceptable', if you have a problem with hand flapping, humming or tics for example I ask you, what harm is it doing? Who really has the issue with empathy?