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 don't know your DS obviously, but I wonder whether what happened with that meal was that he thought that he could cope with the change of TV, found he couldn't, and then hiding in his room was in part shame about that (he wanted to do the right thing and let you choose) and in part sadness that he couldn't enjoy a meal he thought he'd like. Like going to a restaurant you've enjoyed before, but there's a huge noisy stag party there that evening and the sensory disruption means that even the food tastes worse (I'm not autistic so maybe that's a terrible comparison & if so, I'm sorry.)

I can see why you were upset - it is rubbish to cook a meal that gets thrown away - but I don't think it was rude.

My DH has as Asperger's diagnosis from when that was a thing. His parents worked really hard on social skills but also gave him lots of down time (he would take weeks off school when it got too much etc). I think he's grateful for it, because it lets him function in the world and know the "rules". That's just one person, though.

I come from an ASD family, though we are all so old that only the youngest of us has a diagnosis. As far as I can see, the key things to remember are:

1. Don’t monologue
2. If you’re really keen about something, remember to check in that others around you also want to participate

Apart from that, I’d say that society is becoming more accepting and just be yourself.

With your example above, let it go, he can eat when he wishes. He removed himself from the situation when you inadvertently upset him which sounds like the right thing to do. When he behaves like this leave him to it, he will come back down when he is ready. Confronting him and asking him to come back before he is ready will only restart the calming down process and mean it takes longer. He can have his dinner later if he is still hungry.

I'm going to guess here as I don't know your son but if it were mine it would be something like this:

He liked the food and thanked you for it. Then you changed his routine with no warning that was stressful. He asked you to turn the TV off and you took your time over it so the stress increased - now he is too stressed to eat. Then you teased him/were laughing, he didn't understand why, stress tipping over into upset so he left.

You are seeing this as bad behaviour but it's not. It's you demanding he do things that to him may be mutually incompatible: let you chose the programme, watch it with you and eat his dinner.

Please understand that introducing something new (a change, a different programme) is inherently highly stressful for many autistic teens. It's not wrong for you to want a turn at choosing the TV programme of course, but mealtimes are probably not the time to do it, neither is the end of the day when he's tired and "coped out".

Is masking a bad thjng?
It's important to be socially adapted as much as possible.
Do you want your child to be disliked and have no friends as an adult and not be able to get a job?

It sounds like he's learning how to deal with things as are you, it'll take time but you'll get there. Him leaving to go to his room seems positive in that he recognised what he needed to do to regulate himself, and whilst it's not about never compromising I'm sure you've discovered that meal times aren't the best times to switch stuff up.

I do agree that whilst it's unfair to have expectations that won't ever align to him, it's important to guide and explain why some things would be seen as hurtful etc. He is also a teen at the end of the day and they push boundaries regardless! There's definitely a balance though and it can be tricky, but setting him up for adult life is ultimately the kindest thing to do. I know there are sadly people who are overall ignorant, but it's more than reasonable for others to respect and not judge stimming, sensory seeking behaviour etc but bluntness/rudeness and sometimes lack of personal space and boundaries isn't something most people just happily roll with.

Yes, masking is a bad thing. Imagine spending every day of your life pretending to be someone else. Supressing every natural urge, scrutinising every facial expression, movement, sound, was it the right way or was it the bad way? It is exhausting and demoralising and is one of the main reasons that autistic people are 9 times more likely to commit suicide and have a life expectancy 16 years shorter than the NT population.

So what you're saying is, being autistic is so totally unacceptable that if people are aware of it they will dislike you and shun you, rendering you friendless and unemployable. Hence you must hide your autism like a dirty secret lest you be discovered.

And you think that's an acceptable thing to not only believe but say out loud - fucking hell!

imagine going through your entire life on “important job interview” or “first date - want to impress” mode without that moment of relief when you leave the event and can relax a bit, get home and take your bra off. It’s mentally and physically draining on you- that is what you’re expecting autistic people to do with that utterly ignorant comment.

Im a late diagnosed autistic, and even with the nice pat “ooh you need to be socially adapted” and a mother who loved to pull me up on any minor social faux pas I made - my entire pre diagnosis life is a history of being verbally and physically assaulted for being “weird”, socially being rejected for not fitting in, bullying and the like. Lots of, I won’t use the word trauma because I’m very much a leave it in the past, but it wasn’t a pleasant life. Hit a severe burnout wall that led to a complete breakdown in my early 30s and my mental health never recovered from that.

With my diagnosis and the knowledge that brings I no longer try to be a perfect people person - if I need to put earphones on in a busy area to reduce how much it’s hurting my brain- I do so; if I need five minutes to just get my brain back into balance- I feel perfectly fine taking that. I’m a better person with the people stuff because it’s like someone has done the ultimate SWOT analysis on my brain and I can work with it, not against it.

Masking just led me down a dark road to no self esteem, no friends, sobbing and contemplating suicide because I felt that I was some kind of reverse King Midas and everything I touched I destroyed. I would rather be a happy, slightly “different” person well that I really am; than some kind of parody of a “normal” person really badly - and yes, I know I don’t read social cues brilliantly - I tell colleagues and friends that if I’m going on too much, just tell me to dial
it down - I’m ok with that.

There’s also lots of evidence emerging that masking, particularly in women, really ends up in very negative mental health consequences - lots of misdiagnosis as various personality disorders, depression, anxiety, unnecessary and ineffective medication because you’re expecting to basically live your entire life as an act.

Some utterly horrible attitudes coming out on here though - we get it - you don’t like “different” - and you think that autistics have the issues with change?!

My ds is autistic. He's 18 now.

What I did was explain to him what social norms were and why they were as such.

We explored whether those social norms were just societal habit or because nit following them could have a harmful effect on others or ds.

From there we discussed when its ok not til follow societal norms and it's ok to be his natural self - whilst exploring how many people can often not be their natural self in certain areas of life because of behavioural expectations.

We agreed that where ds may not understand some social norms and why he should adhere to them that he would adhere to the ones that mattered but where it was just a case of others finding him weird (ds words not mine!) rather than it being harmful he should - as everyone does - be his natural wonderful self.

So we had conversations about how everyone may want to tell their teacher/boss/ the local bus driver to fuck off - but it's not ok for anyone to do it. And explored how ds often struggles to express his opinions more than others because he struggles to see the other persons side and consider why they did what they did in the first place to wind the other party up!

So yes - whatever I expected respect and discipline in how he treated others. I expected him to adhere to respect rules that had potential to harm.

But if he wanted 4 plates for dinner because he won't eat wet/ dry or hot/cold food on the same plate then he can absolutely tell people kindly to mind their own business and they get in with their dinner and allow him to get on with his!

Just having the one plate is a societal norm that adhering too has a detrimental affect on him but that not adhering too has no detrimental affect on others.

Does that make sense?

Imo the problem here is you sprung it on him.

What you need to do is gently introduce the idea that once a week you will choose a programme.

Start off with this as a discussion with a start date so he knows it's coming and has time to process it.

Then start off with telling him a choice of 3 things you were thinking of watching and asking his opinion.

Absolutely I wouldn't be allowing him to dictate the households tv viewing but if at 13 he can't cope with your choice then you've allowed him to get to this point and you can't suddenly expect him to accept the change. Not even an NT person would just shrug and be accepting of such a dramatic change in the status quo without any actual reason or explanation for the change.

I also work with autistic children. It's amazing how many parents tell us "my child will only allow a screen to show ......". But yet they engage happily without meltdown with all sorts at school. And that's because that's been their norm in our setting from day 1. Part of their routine.

That may be true @itsgettingweird but it may also be that, after a day of coping with a flexible routine at school, their children have exhausted all their ability to cope by the time they get home and just need things to be utterly calm and predictable with few demands.

As an analogy, I walked 6 miles over rough terrain during my working day yesterday - that did not mean I was able to happily walk another 6 miles when I got home.

I feel sad for your Ds here. You’ve suddenly created a stressful situation for him (asking to watch something else) when he thought he was going to get to eat a meal he likes in peace. If you want to watch something else and he has the ability to understand this then you need to prepare him for this, probably a day or two before by talking about it and then giving him time to process this. Not literally the moment before he’s sat down with his food, anticipating he’s going to be able to eat it watching what he wants. No wonder he was too stressed to eat.

I have autism, my son has severe autism - he’s 11 and attends a complex needs school. He doesn’t have the ability or insight to understand how to mask or when something is appropriate or not. Yes we do try to guide him when out and about for others sake because like all parents we want to be accepted and understood but sometimes that’s not always possible and the more people understand about autism the better. I am very high functioning- for want of a better term; lots of people don’t like those terms, I was only diagnosed after having Ds and recognising things in myself.

The things that affect me the most are other people changing things suddenly (like you wanting to watch a different programme in your example), other people being in my house (I can only tolerate dh, dc, we don’t have any extended family and the dc don’t have friends over due to the nature of their schools / university- dd is an adult now and lives away at university, when she comes home she doesn’t have people over and is fine with that, and Ds friends all live too far away and he’s the same as me and doesn’t like people here anyway). I have spent my whole life trying to fit in and I won’t do it anymore. It’s exhausting.

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?

Yes this but also having a home environment that allows as much as possible for people to just be.

is masking a bad thing?

Also everyone ND and NT masks. Every single day. No one ever has a “I’ll go to work as myself day and tell everyone exactly what is on my mind in every moment” they mask their thoughts and emotions and many other aspects of themselves. However for a lot of people their masking is based on social conditioning they have integrated to the extent that they can unconsciously mask for autistic people where the social rules are not so explicit their masking is much more conscious and so takes up another layer of social energy and as such is very demanding. Masking is a necessary aspect of life but because it is so demanding for autistic people allowances must be made for that.

I also find it weird that you’re focusing on whether he’s eaten / enjoyed the food when it’s really obvious you’ve created the “meltdown” by suddenly springing on him that he can’t watch what he was expecting to watch. Routine is everything to people with autism. It’s not just the right food. But it’s having the right food, with the right programme, right bowl / plate even often, same spot to sit in etc etc. Change even one of those things and everything feels incredibly wrong. It’s like going down for breakfast and finding your Mum standing there but when she turns round it’s not your Mum at all but some other woman in her clothes and everyone telling you it’s fine because it’s your Mum and you know it’s not. It honestly feels that wrong, and horrible.

I'm not talking about after a long day. I'm starting routines before attending. And where they say unless a screen shows paw patrol (for example) they'll have a meltdown.

Fwiw I don't buy into the belief it's normal for a child to get home and explode through masking. If that's happening their needs aren't being met in setting because they shouldn't need to mask if their needs are being met.

Your instance of walking ain't the same thing. In that instance it would be like someone saying "they can't walk 6 miles" and then them walking 6 miles despite not being forced to.

If in a setting a child couldn't cope with the circle time tunes in class they'd be taken out. But yet in most cases despite us thinking we need to make adjustments to their day and provide 1:1 elsewhere during these times they make a choice to stay - often not wanting to leave when offered. We don't teach children to manage to cope with things they cannot manage - we teach them to communicate their needs so we can support them.

My point I make to ds is that he thinks he doesn't noise and crowds because he's autistic. But yet many people don't like them. They difference isn't in what he likes and dislikes but rather his ability to handle the sensory inputs or emotions around it or communicate his needs and understand adjustments that he needs to make or to be made for him.

IMO a lot of damage is caused when social skills are enforced with shame - or conflated with your intention/character.

I try to frame it in an upskilling way - the way that you would work at any other skill. Breaking it down into smaller steps, acnowledging it will take repetitions, taking breaks from it.

Rationalisation is playing to ASD strengths. My DC understands “X person worries that you are angry if you do not say hello when you meet them” better than “you must say hello” and certainly better than “it was rude to not say ‘hello’” .

Part of that is also owning though that my kid will look different. They will deliver ‘hello’, turn on heel and walk away. They won’t generalise the skill to extending the interaction to some chit-chat like an NT child would.

My objective is that they have the social skills to move safely and effectively in society, rather than to pass as NT. My ASD DC also subscribes to this objective. He understands that I do not tolerate certain behaviours in the home because I don’t want all 6ft 2” of him to get punched or arrested for the same behaviour out of the home. This gives us a starting point of collaboration that helps a lot to make it not horrible in family life.

There’s a lot of ignorance on this thread. People with autism don’t just “dislike” crowds or noisy people/ places like many people do, it can actually be painful for them. People are not understanding the sensory aspect at all. It’s not a case of “oh this place is noisy, I don’t like this” - for many people with autism like me it actually causes physical pain being in a situation that is too loud; for me it’s literally like standing next to someone shouting in my ear at full volume if I’m somewhere too crowded. As a child I used to be physically sick everyday before lunch because the noise in the canteen / dining hall was so loud that it caused me physical pain and distress and I was terrified of that. (This was in the early 80s before we understood autism as much as we do now, still have some way to go)!

@itsgettingweird
My point I make to ds is that he thinks he doesn't noise and crowds because he's autistic. But yet many people don't like them. They difference isn't in what he likes and dislikes but rather his ability to handle the sensory inputs or emotions around it or communicate his needs and understand adjustments that he needs to make or to be made for him.

No. That’s not how sensory overload works in the autistic brain in regards to noises and crowds. It’s not a like or dislike, and you not helping him by minimising his disability by comparing it to how an abled NT person feels when faced with noises/crowds.

Where a NT person may dislike noises and crowds and feel mild irritation and annoyance, the part of the brain activated in an autistic person by noises and crowds (or any sensory sensitivity they have) are the receptors for PAIN. So they do not feel irritation or annoyance, nor do they feel the sensation of pain but their brain has the exact same reaction that NT have to pain which is a sudden overwhelming urge to leave the situation as fast as possible and avoid it in future. It’s that same feeling you’d get if you stuck your hand in a blazing BBQ but without the actual sensation of pain. And then thinking of doing it again in the future comes with same sense of dread and fear and heightened anxiety that can lead to meltdown.

Yes, if it’s really bad, say a bowling centre or amusement park, cinema, concert the noise crowds can tip over to causing the panic and flight response which includes pain.

Great answer.

What about those people who are ASD And have VCB ?

No answers just here to say I appreciate that it's difficult.

I don't really have answers for you but as somone who has worked with people with learning disabilities you're right to look for this line.

I think there's loads reasons to want to address the worst behaviour for want of a better word. Such as him living in the world and society having a view on what is normal behaviour, however unfair that is. Or wanting him to have friends.

I suppose firstly I should disclose I have asd and highly functioning. I have a high paid job, two children and lovely home.

What helped me as a teen was people explaining social conventions (I mean literally breaking it down v v simply) and also where the line was. I appreciated it because it's awful to be in a situation and misstep and have no idea what you did but what caused the reaction and no idea what's going on. Think of it like being colour blind to emotions. Rules help. I love rules still do actually

I totally get people don't want their Dc to mask at home but realistically actually imo to accept a diagnosis of asd first you need to explain why masking happens rather than cart Blanche to do whatever. This isn't helpful when these kids grow up.

I know that even if im having a sensory overload (im a mum and it happens ALOT) I cannot hit or be violent. Instead I was told if I feel like x do y it helps.

Im going to upset people here but imo people with ND can be taught not to hurt others by teaching them rules. I love rules and most asd people do love rules !
Obviously you don't do this by shaming but by saying the non social convention means we do x.

Lack of rules is not going to help asd in the adult world iMO

Does it suck, yes, is it fair no. But society is by the majority NT, and your ND child will have to live in it. Therefore you have to be practical about finding the line between be your self and ok this thing I have to do. I don't get all the emotiveness over setting rules to help your child succeed in the current society they live in, laws are rules, I don't break them. I may not be motivated all things warm and fluffy to not break those rules, but I don't want to go to jail so that stops me.

My family did a great job at explaining things to be in a v granular detail

Just to say before everyone @ me - asd is a spectrum and these are just my opinions but people with asd iMO in the whole can totally get the concept of don't be violent if people take the time to explain why they shouldn't.