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?

We didn't tolerate bad, unacceptable behaviour ever, what I did allow was for dd to skip certain things she found stressful, or for instance leave the table early at big family meals that were loud talking, ensured that there was suitable food so no battles in restaurants or with guests (at home I didn't pander to her food restrictions). We carried ear defenders l, later musician silicon ear plugs to reduce sensory overload.

My view is that they have to live in this world and come up with coping mechanisms for this world. Tough but true

Bingo. That's how I approach it but fear saying it outloud for a NT person will come along and yell at me.

It seems that until I explain I have asd and it's just not (to me) as emotive as people paint things.

I would also say I see a lot of NT mask and obviously it doesn't effect them the way it effects me but wouldn't it be better if we just let people (ND or NT opt out of things) without to much shame.

Have a read of the "Ask me anything " thread about autism OP. It's an ama "I'm an expert on autism" or similar.

I think your example with the meal and the TV shows (as most of the posts after have pointed out) a lack of understanding about autism. More recently the "double empathy problem" has been coined as a phrase which I like. So often we're asking autistics to conform to what we want/to understand NT behaviour yet NT are not asking the effort to understand and empathise with autistics.

That meal time was probably a bit thing for your son and is probably yet another moment in the day of feeling hurt and misunderstood by people. It really is worth taking the time to learn about autism - learn about why change to the routine is difficult etc.

Like others I havent liked the false dichotomy of being autistc (ie bad) vs being expected to be "normal." Again like any other disability expecting someone not to be disabled is really unfair. Just because you don't understand the diabaility/don't mean to be unkind /hurtful to your child doesn't mean it inst the case.

The more someone learns about autism, and the more understanding around issues like change, planning, processing time, sensory issues, making etc the easier it is to help their child with regulating, with coping. When a child can feel safe and regulated and not constantly "on alert" then there is a much better chance of surviving adult life.

It might be helpful to raise scenario's that illustrated what people are saying rather than talking around abstract principles of behaviour/masking.

Ie the dinner example was great as lots of people came back and explained.

And just above someone said how for large family meals they allow their child to leave when it gets overwhelming.

Often with ASD kids the bad behaviour is triggered by something else - sensory overload, unpredictable situations, social anxiety etc. My DS has a very over-sensitive system (particularly photosensitivity and noise sensitivity) and gets overwhelmed easily. We're going through a particularly bad phase of meltdowns at the moment and it's exhausting. I just have to keep telling myself, it's not a case of tolerating bad behaviour but understanding what circumstances might have driven the behaviour. Then trying to mitigate and prevent future occurances as much as possible.

The things that I have noticed that cause the most social problems in school:

Personal space - Children don’t like it when people come up too close to them and talk in their face. This is the case for ND and NT children. So it is worth working on.

Choosing the right people to be friendly with - Children with autism can find it harder to pick up on the more subtle nasty personalities and often want to be friends with people who others are more wary off. Encourage friendships with the more tolerant, gentler, types rather than the charismatic bully. This is not always easy for parents to do though.

Telling tales on other children when they break rules, even though their actions have no impact on your DC. This causes a huge amount of conflict and upset, especially when they are older.

Don’t laugh when someone makes a mistake in class. It is mean and really humiliates other children.

Personal hygiene. This goes for all children. If your child washes every day and wears deodorant, they will have an easier life in school.

Also, bear in mind that all children are sorting out their social skills and muddling through as best they can, so they will make mistakes and not always do the right thing.

Absolutely Giselle - instead of seeing it as "bad behaviour" it might help to look instead at what is going on for your child.

If you can find what they're struggling with you can minimise sensory overload, reduce NT expectations, etc. Also eople are so much more receptive to learn about NT "social rules/norms" when they're not in a a fight/flight state of alert, so it really does work long term too.

I find Neurowilds graphics fantastic for explaining some of these things. If you search "neurowild" and just look at images you will get lots. She's brilliant at explaining concepts that I think can be tricky for parents to get their head around.

I've attached 2 that are good for behaviour. They also have a Facebook page but that's not just the images.

One of the best things I think parents can do is try and get out of the mindset of "underatanding autism must equal bad behaviour, or that autism = bad behaviour" and instead learn lots about autism and how their child is functioning from autistic sources as it makes all the difference.

No one - or certainly I'm not - equating the experience as being received in the same way.

But it's also damaging to autistic people if everyone assumes everything the do think and say is because they are autistic.

If someone autistic doesn't like a noisy place they shouldn't attend nor be made to.

If someone NT doesn't like a noisy place they can often communicate they aren't attending and why. Some autistic people can and some can't.

It's about not always equating every single like/ dislike and preference to the person being autistic. This removes the respect as seeing them as a person first. You are just seeing an autistic person.

People who refuse to see autistic people as an alien species without human emotion aren't the ones with wilful ignorance.

My ds gets utterly infuriated by people not seeing him for him - understanding that some things are physically painful for him due to sensory differences - but rather equating everything he does as being because he's autistic rather than accepting like everyone he also has things he just doesn't like!

He successfully made a complaint that was upheld when his college lecturer didn't tell him about a change of timetable the following week because he's autistic and they don't like change and rather for his support worker to tell him the day before (this was when she decided to tell the support worker). Ds already knew about the change because his classmates were told so obviously it was discussed!!!
He claimed disability discrimination because she didn't make reasonable adjustments - Eg telling him on the same day but using visuals etc - she treated him differently on her assumption it would bother him.

Many autistic people need routine. The use of schedules and visuals such as now/next.

But if from a young age they aren't supported to manage that dinner cannot come at 6pm every evening and it'll always be mum who provides it, dad who takes you to bath and mum who puts you to bed what happens the day that that absolutely cannot happen that way.

It broke my heart the day I watched a 14yo autistic person be sectioned because their parent who always put them to bed was unfortunately unable to sue to being hospitalised. They stayed awake for 72 hours before finally causing them self significant harm. It didn't matter that they had the skills to tell supporting adults they wanted mum. What mattered was that they couldn't manage the emotion around it not being able to happen because their world had been so closed down to such a linear existence the parts of life you cannot avoid weren't possible to manage because the skills had never been developed.

I still keep in touch with this family and 10 years later I report they are doing well, working part time and live in supported living.

Do they find change easy? No. Can they express this is a way that isn't damaging to themselves? Yes.

But importantly they have the skills now to tell someone that X changing has upset them and that they can be helped to manage that by x y and z.

I think so many parents of children with autism have unreasonable expectations of how they want the child to behave. And then when the child eventually bursts and explodes they further punish the child by getting angry with them…! With most children with autism it’s usually possible to identify the things that send their “inner traffic light” from Green to Amber, ie a warning sign things aren’t right, and then to make changes to reverse back to Green, rather than keep pushing until it’s a red and then getting angry with them for running a red light (ie having a meltdown).

For example, we would never expect Ds to eat at a table at home or sit at a family meal. These are things which he would just find unbearable and they would probably mean he would be too stressed and upset to eat anything at all (he was under a dietician for restricted eating when he was little, he literally ate nothing but dough balls for 3 years, breakfast lunch and dinner, he now eats everything and anything and I’m convinced it’s because we didn’t make any issue of it at all and just let him explore new foods if he wanted to but always gave him dough balls if he didn’t). Anyway… if I forced Ds to do the whole table thing eventually he’d have a meltdown. So we don’t expect him to do that. We wouldn’t force him as he’d probably end up upset and fed up - so whose fault would that be? Ours. Not his. But I’ve seen many parents in that situation get angry with the child when they’ve caused the issue themselves.

Absolutely Xrays.

And it's about tiny steps. Repeatedly expecting something completely unreasonable or unachievable is so unfair for the child.

The attitudes of some (significantly minority if not majority) of non-autistic posters on this thread show why we are decades away from an autistic-inclusive society.

and those of you accusing us of using our autism as a “get out of jail” card and simply need to try harder?? most days it feels like we are trapped in this strange nonsensical prison with a load of people who behave in cruel and unfathomable ways. So it’s more of a “stay in jail” card that society waves at us every day.

such a depressing thread.

That’s not what I was saying, at all.

I am very aware that not every person with autism behaves the same way and of course we are all individuals.

@itsgettingweird I agree with your son and I think your post nailed it.

I understand that toddlers young children with asd cannot communicate. But ND adults can and it's infuriating to be lumped into massive category without the assumptions that this person may be able to communicate quite effectively if only they were given the chance.

I'm glad to hear that the family is well.

Yes.

'Diagnostic overshadowing' where everything is attributed to the ASC diagnosis.

Which can be potentially very unhelpful when someone with ASC may have a co-existig anxiety disorder for example which would benefit from medication but it's discounted as just part of being ASC.

And potentially dangerous if an individual with ASC who is anxious around a particular setting or person and it's discounted as them being anxious because of ASC when a more sinister explanation is possible like abuse.

But can also patronise and 'other' the person and lead to undesirable behaviours being not addressed as 'it's because they're ASC'. The amount of people who think an individual with ASC is incapable of lying, being willfully disobedient or manipulative is staggering.

I find much of this thread depressing too, there seems to be an assumption that if only ‘they’ would just try a bit harder ‘their’ different neurology would miraculously be overridden. I was confused by what OP was actually referring to as ‘bad behaviour’. If her son is using up all his energy to attend school (often extremely difficult for ND) coming home and resting isn’t ‘lazy’ it’s surviving! She says her son is usually lovely. Well for a 13 year that isn’t bad… autism is a spectrum different people struggle in different areas to a different degree. Because one person can do something doesn’t mean another can. If someone has reached well into adulthood before getting a diagnosis their difficulties are unlikely to be the same as someone diagnosed earlier. Thank goodness in the real world things are starting to change and ableism is being recognised. Read the news, people are literally dying because people won’t take the time to listen and make small accommodations. Someone boring you with their conversation? Maybe just be a bit kinder and give them a few minutes of your time

It's hard and blurred is the answer but you find a way. We are out the other side just about my DS is ASD and 21. He pushed boundaries land there was arguments and times when we had to enforce we have 2 younger kids in the house. As part of a family you do have to moderate behaviour none of us walk around doing whatever we like having no fucks what impact it had on a time else. My DS particular issue is sleep. He doesnt sleep and would love to wake me up to tell me he hadnt got to sleep yet at 4am. I had to say he couldn't do that as I was up at 7 with the other two. I had to tell him to keep the noise down and to use the downstairs loo. That's just one example there are plenty too where we let him do stuff that normally I wouldn't like store 35 balls in his bedroom as he didnt like them to be outside.

Yup Bungle - even the example OP used of her son calmly taking himself away from the stressful situation (amd probably feeling hurt and hungry) was considered "bad behaviour" 😔. Yet was a lack of understanding on OPs part of her own behaviour.

It's interesting that you have framed your input about autism around the unacceptability of violence when there has been no suggestion by the OP that her son was violent. Why is that?

Aargh sorry @DisquietintheRanks quoted the wrong poster.

This, absolutely.

We ended up at tier 3 CAMHS, when my Dd's transition to secondary school went badly and she refused to go to school, became depressed and stopped eating. The therapist decided virtually on sight that she was autistic (no-one had ever suggested this before) and put everything down to that. Basically she said she couldn't help "because autism and CAMHS don't do autism". Of course the autism service "doesn't do mental health" so you get help from nowhere.

Only demanding a last meeting with a psychiatrist before they discharged her led to the discovery of severe OCD and a significant past trauma that she'd never been able to tell anyone about as the source of the majority of her problems - she is also autistic, but that is not the reason for her poor mental health.

Yes, absolutely this.

@DisquietintheRanks I'm not sure if you meant to quote me or not -

But since you asked. I was responding to a previous poster who got hit at a wedding by someone's adults son and his parents just said it went around saying he has asd and the parents didn't even check in with that poster to see if she was when carted off in a ambulance. That to me is shocking

As someone with asd I find it offensive when people suggest that children with asd can't be taught that violence actions (as a bare minimum) aren't ok, and someone with asd may need to be shown in a different way to cope than NT but it can still be done. A person is more than their asd.

Obviously only my opinion.

Also I was talking about my personal lived experience of growing up with ASD

Not "autism" as a generalisation. Which would be dangerous thing to do since is it a spectrum. I find it personally really frustrating that of all the things in my post you focused on. You focused on that tbh, but each to their own

We weren't talking about violence though here - the example was of calmly removing themselves from a difficult situation...