to struggle with radical acceptance while parenting an ASD teen

[lostwilltolive]

DS15 is on sertraline for anxiety/low mood and, has recently transferred to a special school that he barely goes to. He is demand avoidant, but doesn't have full PDA profile. He barely leaves the house, has cut off contact with everyone except for a few family members, dropped all hobbies. He talks of suicide quite regularly and sees no point to his life. He has had a really hard time having undiagnosed SEN when starting secondary school. I would definitely have done a lot of things differently if I'd known more about ASD when he was younger. My heart has broken for him several times and I think I really have let him down but we are where we are.

I am all signed up to low demand parenting, as is DH. Likely we all have ASD but our son has some other mild but significant difficulties. I definitely have ADHD.

I know I shouldn't but I struggle with how rude he is with me recently. I almost never get a please or thank you, just an ever changing narrow set of things he will eat if bought from the right shop and prepared in the right way. If challenged he responds with arguments about not having been asked to be born. He has no ambition to do anything or work.

I'm bracing myself for supporting him when he's an adult. I wonder if he'll ever stop expecting to be treated like a princess or if it's me that needs to understand that this is what caring for an autistic adult is like.

Also wondering what happens if all the people around you let you be as rude as you like and no-one ever challenges you?

AIBU to think he should expect to contribute and be productive?

The 16 year old you are seeing now is not the same person as the adult he will become in a few years. Autism plus puberty equals chaos. You just have to do whatever you have to to survive this bit. As hormones settle down, things will get better. You are perfectly reasonable to expect that he will eventually be productive and contribute rather than being carried. This will not happen quickly though.

I think if you reflect for a bit you might be able to distinguish between areas where your son isn't able to help his responses- ie he probably doesn't have much choice about his sensory responses to food - and his capacity to be decently behaved. I do think, just to be clear, that a young person who is utterly overwhelmed has very little capacity to muster politeness and it's unreasonable and counter productive to demand it. But I think you can learn to feel the difference and you can still have clear boundaries about behaviour and morals - just be ready to be flexible about when you can make that boundary clear.

I really recommend The Explosive Child by Ross Greene.

It is very difficult, I have a 19 yr old with ASD/ADHD who is very demand avoidant. The teen years were challenging, but its evening out a bit now.

I dont have any answers, but I just want to let you know that you're not in your own. You can challenge the rudeness to you, I certainly have. Often the nastiness can be part of the demand avoidance. Escalating when other tactics to avoid the demand aren't working.

Now that mine is an adult, and I do not have to tolerate it, my threshold for being treated badly has come back up to normal. I wont tolerate as much as I did when she was younger.

Do you have a feeling about why he isn't going to school? What are school doing to help? It must be utterly heartbreaking for him knowing everyone else is on their paths to GSCE and A levels etc. Poor lad. It's so tough.

He is experiencing the pretty hellish thing of being an autistic teenager whose had to endure through mainstream secondary school (although out of it now - massive kudos for that)- I think the important thing is that you love him where he is at without expectation in the here and now but keep hopeful about what a full life he will have (and you will have). That is absolutely easier said than done, but I have numerous friends who have been through this with their kids and the83 kids have all ‘emerged’ in different ways but definitely doing things that would never have been possible a few years ago. Holding your nerve is such a energy sapping thing, especially when the world might think it’s ‘lazy parenting’. It’s anything but that! It’s exhausting and tiring and draining and worrying. But loving your kid through autistic burnout does work, it takes a huge amount out of you, but it does work.

I’m struggling with this too. My 19yo has been in his room for about 5 years while I ‘low demand’ and I can’t see things getting a lot better.
I wish I had some advice but I’m following for tips and to tell you that you aren’t alone. I think it’s more common than we realise, but very isolating as paremts.

Oh, OP, this is so hard. I feel like I know this terrain well -I've got one very similar.

Your DS' autism is currently intersecting with what sounds like pretty standard teenage stuff, as is my DC1's. I have managed to keep sane-ish by, within the container of our low (not 'no') demand parenting, showing DC1 what my frustration and affront looks like, and allowing DC1 to experience my 'big feelings' in a carefully controlled and moderated way. So when DC1 does something which, with the best PDA-parent will in the world I can't 'absorb' I make sure they know about it. I deliberately do not create an expectation of repair such as insisting on an apology or DC1 picking stuff off the floor after a pull-everything-out-of-the-cupboard, because it would be experienced as a demand and we'd be in a stale-mate. Instead, I use contextualise my observation: "When I notice you have done X, I feel Y." I could follow up with "Would you be willing to Z?" but this is rarely relevant. What I want out of it is for DC1 to just experience grown-ups who are able to express strong feelings and offer direct criticism in a firm but regulated way, and for DC1 to learn how to receive such feedback constructively.

With low demand, I think it helps if you have a long term picture in mind and see the low demand as being a step on the way to that, rather than a goal in itself, if that makes sense?

It is tricky to do this because naturally if you have a goal the urge is to get moving towards, it whereas the point of lowering demands is to stop pushing them towards anything in order to alleviate pressure.

I think the Ross Greene structure as someone mentioned can be helpful - because you're classifying various things as "unsolved problems" and sometimes breaking them down into smaller component demands, and then making a conscious decision to Plan C (drop the demand for now) as part of a sort of triage process, rather than it just being an endless pursuit with no end point. I also think his collaborative problem solving method in general is excellent for a neurodiverse household where unconventional solutions are often the winning case.

I am not personally convinced that just "doing low demand" and then literally never having any demands or expectations and bending everyone else's lives around what the child/YP wants is helpful - and I say that while believing (genuinely) that parenting in an autonomy-centred way is a helpful thing to do.

Some of Naomi Fisher's stuff is good - I liked her talk on making changes with a demand avoidant child. Some of her other stuff is less good, she seems very convinced in one breath that low demand forever will magically result in improvements, while saying in the next that if you're doing LD properly then you're not just giving up, it's a slow and conscious process and I find this a bit incongruent, although perhaps she is simply talking about different children.

I do also think there is a difference between taking a demand off a child (e.g. the demand being "You must eat the dinner we serve at the table at the same time as we do") and becoming a short order cook. I think it's OK (personally) to say alright, DS, you don't have to eat the casserole we are having, but no, I'm not going to cook you your own separate dinner and deliver it upstairs.

I realise that might be easier said than done if they will simply not eat otherwise. And it wouldn't be appropriate for a younger child who is not able to safely make their own dinner. But for a 15yo, if there is no eating disorder or health issue to worry about over food, for me the radical acceptance part might be that I radically accept that his diet is going to consist of pot noodles, biscuits and ketchup sandwiches, eaten at midnight after everybody else has gone to bed. And I would probably keep a stock of easily prepared fruit and vegetables (the Birds Eye steam fresh bags are brilliant) and easy-to-follow/appealing-to-him recipe books lying around and the ingredients available, just in case.

Thanks for this thread. It described my situation very well. Yes, it's very isolating, isn't it, when all the "other kids" are getting exam results and moving on to university or whatever.
I think the point about "acceptance" in this situation is that your DC isn't offering you any other choice. There isn't another way or anything you can change it right now. So it makes sense to try to move through it, have as nice a life as possible within that and create a loving environment for the child - and yourself.
It's fragile though as a status quo and I am not able to maintain equilibrium at all times. When it breaks down, I've been saying to DS, my love and commitment to you is unconditional but my strength and emotional resources are not limitless. Nobody's are. Everybody has edges. So while my intention is to maintain a low demand environment, but I don't always manage it, and the work is for me and him to be able to accept that.
i am finding all this so so hard but this thread helps, as I don't actually know anyone else in this situation and while on my own I had come to the idea of low-demand parenting, I didn't know it was a thing, so I will be looking up some of the references on here, thanks.

I think the rudeness is probably that he's so dysregulated all the time. I find all you can do is wait for them to come out the other side when they've had an asd burnout and subsequent MH issues. Support as best you can, low demand, encourage but not pressure. It's hard op sending love.

Thanks for all the replies and for the solidarity.

I really do get how awful being a teenager is and can't imagine how much more intense it is if you only see your parents from day to day. He doesn't go to school because he feels like there's no point, that he's not learning anything there. When he is there he doesn't engage with most lessons or therapies for one reason or another. He doesn't want any qualifications or a job because he thinks humanity is awful and doesn't want to take part. I remember having similar feelings at his age.

I keep remembering the analogy presented in an NVR about the need to put your own life jacket on first. Self-care even for carers. I think part of this is that I do need to show him somehow when he's crossed a line, that he should be respectful to the people looking after him. I don't know how to share my 'big feelings' in a useful way however.

If I don't express my frustration resentment builds up and that shows on my face and in my voice etc. With his RSD he thinks I'm always angry. If I'm sad it looks like anger to him so he can't process anything as constructive criticism. I end up just avoiding him and then worry I'm being that emotionally manipulative parent.
It's really hard!

It is great to see the message about things getting better after the teen years being repeated. I just hope we can hold on for that