To expect my AuDHD young teen to understand the impact of his behaviour on rest of family?

[Thebabycheeses78]

Trying to get my AuDHD DS to get his things together ready for early flight back home. We are staying with family. It is taking forever to do something that has taken my other kids 15 minutes to do.

It’s not just this evening- it’s the same drill all the time. Constant nagging and standing over him to get him to do basic tasks.

and of course, it always descends into a shouting match. If I sound even slightly irate after asking him to do something 10 times, he starts screaming and shouting about how I’m shouting at him.

I end up frazzled and upset. Every trip, every day out, every weekend is like this. I even have to cajole and drag him around to things he wants to go to.

I’d hoped we’d have all been packed 2 hours ago, but it has taken this long to get him moving and he’s still not finished. It means the evening is ruined for everyone and our last day of holiday has been stressful.

he is high functioning. He does well at school. He is someone who will very likely go to university, get a job and outwardly appear functional. But I worry about him- I can see his wife on mumsnet in 25 years at the end of her tether because he won’t adult.

any suggestions on how to get through to him about the impact he is having on others?

1. John Sharry from Solutiontalk has a blog and runs zoom courses/workshops on parenting ND kids. I've found them helping me to understand and think a bit differently.

The link above is of a talk on Burnout in ND kids and their families (recognising the impact on the parents) .

1. ADHD Dude on YouTube also has lots.

1. PDA is one yo look at. Demand avoidance.

Also, chatting to him to build awareness, can he identify what part of it is the hardest. Task initiation, sequence, interest are all an issue with ADHD.

It's hard and exhausting OP. Hug 🫂

Yes I can help you with this.
DD16AuDHD here.
What she finds useful is if I offer help.
You don’t need to do tasks like packing for them but “man marking” them helps. Just sitting there, make the odd helpful remark.

It also helps to give them the control, ask if they want your help.

It also helps to just realise they mature slow so my DD16…I take a third off her age mentally.

Yes, routine helps me a lot too.

So to respond to your actual question, my experience suggests there is zero chance of actually getting a child like this to appreciate their effect on others, but hopefully you will find some tips here or elsewhere that will allow you to mitigate the effect on others, including you.

It may be it's not until long in the future, possibly when he has responsibility for others, that it will dawn on him what you did to support him.

I have a diagnosed 15yo with adhd and a 9yo as yet undiagnosed audhd dd with pda traits. Ds was diagnosed just under a year ago, and we began parenting dd like she was nd when she was 6 and reached burnout.

I've found it interesting to see how different their personalities are and how that affects their difficulties. Their executive function weaknesses are different combinations. Example - ds is chilled out, freely accepts advice but is prone to taking the path of least resistance so task initiation and goal directed persistence are an issue. Dd is incredibly organised, a real planner, but is a perfectionist who quickly becomes overwhelmed by pressure - both real and perceived. Emotional dysregulation and rigidity of thought are her hardest challenges. Both 'high functioning'. Nd people are more than how their brains are wired. Personality and stage of development are as important as they are to nt people.

If you're looking for a resource that takes all of this into consideration, I'd recommend a book called Smart But Scattered Teens. It recommends a range of approaches depending on personality and type of executive function weakness.

I like Smart But Scattered.

This is why high/low functioning labels are no longer used. AuDHD profiles are usually very spiky - some things an individual is good at, others they aren't. Clearly his organisational and executive functioning skills are badly affected. His social skills are irrelevant to that.

I'd suggest some courses or books on both autism and ADHD would be helpful. My son finds checklists useful and he also needs a deadline to work to. Others will need different things.

@Thebabycheeses78 this is so so sad story our GS is the same we have him mon/fri and when he goes to his mums he comes back as if he has forgot all the rules and boundaries we have he none its so stressful

OK so you’re still very new to this, and a diagnosis can throw all the cards up in the air, and be very raw for the whole family. Hello there. We’re years down the road for you and still have the occasional binfire.

So - I would say to you that under moments of stress, usual parenting teachable moments go out of the window in favour of getting to the plane without everyone losing their minds. There are helpful strategies - comprehensive packing lists for example - but my AuDHD daughter finds packing and leaving very stressful and spends a lot of time on the loo when we have to do it.

You need to be honest with your other children that you are going to need to give your AuDHD child more help with some things, because they are significantly harder for him than they are for everyone else.

In terms of competing advice, I would suggest ADDitude emails, and Missing The Mark (although I do more low-medium demand parenting). The Explosive Child is unfortunately titled but is well worth reading.

You would not stand over a dyslexic child trying to spell getting irate with them.

His executive functions ie planning / admin IS part of his disability. So you are basically getting upset with him for displaying the traits of his disabilities.

I would not do it for him either as he does need to learn - but do it with him, do it together. You need do show him over and over again how it’s done.

I would also sit down with him, in a pleasant way when you are both calm, and come up with a written list of the steps. And then get him to imagine doing these steps in his mind ie what would he put in his suitcase first and imagine himself doing that. I realised when I was having therapy, that part of my planning deficits was I was not naturally visualising the steps in my mind - so before I do exec function stuff now I just spend a few mins in my head going through the steps as if I was doing it in real life.

I had a high IQ as a child (top 2%) but I my exec functions are shocking. I was having therapy when we worked out the reason I did not open mail is I am not sure what to do with the contents when I open them. Unfortunately my children also have exec function problems and the only way to move forward is to spend time helping them work out the basic steps

Absolutely. OP's not a support worker who gets off and goes home in 12 hours - she's his mum, this is her family life, and perhaps we can remember that she's trying to organise a family to catch a flight which is a stressful situation for everyone even if it is going to be particularly hard for her son.

I have a lot of experience of AuDHD.

Honestly comparing the struggles of a teenager with packing to a child in a wheelchair struggling with stairs is utter rubbish and deeply offensive.
It is absolutely right that we acknowledge the challenges caused by AuDHD and respond with patience and the right adjustments.

Equally, once those adjustments are in place, it is absolutely right to expect a high functioning individual to take some responsibility for their actions and behaviour. In fact, it is cruel not to.

Quite rightly we are retreating from the terrible treatment doled out to young neurodivergent people in the 80s,90s and early 2000s - which sadly I have firsthand experience of.

However, while support should be offered and it is shocking Op’s son could not access social skills help, I strongly believe that it is incorrect to class all high functioning people in this group as disabled.

We are allowing young people to see themselves as victims and making it harder for people with profound disabilities to get the financial help they need.

In short op, you sound very caring and compassionate, you have fought for your son. It is absolutely right you have expectations of him.

However, while support should be offered and it is shocking Op’s son could not access social skills help, I strongly believe that it is incorrect to class all high functioning people in this group as disabled.
We are allowing young people to see themselves as victims and making it harder for people with profound disabilities to get the financial help they need.

Hmm. I have a lot of experience too. It does vary but some ‘high-functioning’ people are disabled to the extent that they will never live independently. Having a high iq doesn’t mean you’re not disabled and these people are as deserving of financial and other supports as any other disabled person.

With autism, the extent of the struggle varies of course from person to person, I agree there. I know you didn’t say this, but I do think a lot of people tend to dismiss high functioning autistics as just quirky/socially awkward.
However, some will never be able to live independently and it’s right that people know that too.

@PassOnThat - how do you manage not getting bored by routines? This is my problem - as soon as a routine stops being novel and starts being embedded, I find it monotonous and then I stop being able to follow it.

Your last paragraph is what we struggle with - DD is probably genius IQ, may end up working for GCHQ for all I know given her academic qualifications.

But she is a liability on her own - hob rings left on for hours after use, her bedroom has been redecorated and carpeted twice in 7 years, the bathroom has been redecorated/sealed and the shower/loo changed twice so that I’ve now hired a cleaner for our home because it literally reduced me to tears to see the devastation and blocked drains etc.

She is moving into a flat for uni that she will actually share with my DH (works in same city 50% of the time) so that he can check in on her, as can I. We’ll also have to hire a cleaning/laundry company to ensure the flat is not wrecked.

She gets PIP as she is not really able to live independently without supervision and weekly support. She would live on donuts and bagels if we didn’t take her out for a couple of ‘proper’ meals a week or stock the fridge up (and even that has to be curated as most ends in the bin as she doesn’t monitor Use By dates and the fridge becomes a biohazard)… but yep, will get a first and everyone marvels at how ‘high functioning’ she is.

Personally I listen to podcasts or audiobooks, get interested within a minute or so in what I'm listening to, and then manage to start whatever the routine tasks are.

I also use an idea I picked up from the book Brain Over Binge, which is that although my lower level primitive brain (in this case novelty-seeking and distress-avoiding rather than junk-food-seeking) has the loudest voice and is screaming at me to do something else other than the difficult task, at the end of the day my higher level intelligent human brain is the one controlling my arms and legs, so I try just moving them as if I was a puppet to start whatever the task is even though the rest of my brain really really doesn't want to.

Once I've started it, it's often much easier to do the next steps in the routine than it was to start in the first place. It's a bit like setting a timer for two or five minutes and giving yourself full permission to stop after that if you want to - in fact carrying on often turns out to feel much much easier than starting did.

It's not magic, as I have to feel worried enough by not having done whatever the tasks are to pull out one of these tricks, and that might not happen till some time after they should have been done. When I do try them they work well though.

@runningpram - while I agree that it's obviously no direct equivalence between neurodivergence and physical mobility, I do think it's sometimes useful to make the comparison to reframe thinking. Too often the default thinking is that ND people are being lazy, difficult, obstructive, rude etc etc etc and not recognising the intrinsic difficulties that ND have meeting expectations in an NT world.

And yes it is tricky because understanding limitations and capabilities and support needs for ND people is hard. I am constantly questioning myself about my own boundaries between recognising limitations and making an excuse (both for myself as an ND person and for my ND DS).

But like OP I do find myself falling into the trap of getting annoyed that my ND DS can't just sort out simple stuff which his younger sibling can do readily and constantly remind myself that it's not simple and easy for him.

This is brilliant. Love it.

ADHD brains thrive on Challenge, Novelty, Urgency and Interest.

There has to be dopamine and adrenaline, or you start flagging. It makes simple tasks like wading through treacle.

Most people will have a preference too. I prefer things that are novel, but the issue with that is that as soon as something is no longer new, I struggle to engage.

I really can't be bothered with challenges, I am not a competitive person, you can't motivate me by saying "right let's put a song on and by the time the song is finished we should have gotten all the shoes in the shoe cupboard", but some people thrive off of challenge the most.

Urgency is a big motivator for a lot of ADHD folk too, that's why things get left till last minute. I remember many school nights at 3am, bashing out 1000 word essays for each class that was due in that same day, and managing on 3 hours of sleep, because the adrenaline was enough to keep me going.

Interest, well that explains itself. If someone said to me let's go learn about the construction of the titanic and it's mechanical failures I would zone out and dissociate the entire time, but if someone said I've just got us tickets to a talk with Paul Stamets to learn about the neurological impact mushrooms have on the brain and how they helped put his mother's cancer into remission I would be so hooked my eyes would never blink and my ears would tune out anything else. So hooked, in fact I ignore my body's signals for hunger, thirst and needing the bathroom. - this is why hyperfocuses can be extremely disabling too.

Try and see times when you're procrastinating as times that you're under stimulated. We often talk about overstimulation but we forget that a lack of stimulation can be just as dysregulating to our nervous systems. Saying you'll get X done then have a treat/reward won't work. Get yourself sufficiently stimulated and then tackle tasks, taking frequent breaks if you need them and cope well with changing tasks to regulate yourself, and then go back to the next task in small, simple steps.

Do some research! I’m not surprised you are losing patience- you are doing the same ( wrong) thing and expecting the outcome to change. You should be frustrated with yourself. If you want to see change, start with yourself.

This is me to a T. "High intelligence" but require substantial daily support.

I have lived independently and my house fell into disrepair quickly, I'd run out of loo rolls before I remembered I needed more, I'd think I need to add this to the shopping list and forget it seconds later, paper work piled up, I'd forget the washing machine was loaded, finished and needed emptying and things would need rewashing multiple times, my energy bills were through the roof, letters, emails and texts filled me with dread.

I now live back home at 30.

I can speak, read, write, I have qualifications longer than my arm, but I am unemployed, employers can't make adjustments that I need, I didn't even realise I need adjustments until I had reached burnout and had experienced significant skill regression. My brain fog became so bad I didn't recognise myself as the once intelligent young woman I was, there were times I worried I had developed some sort of premature dementia. I lost my exceptional visual recall memory and now I have face blindness and can't even remember what my close friends look like until I'm stood in front of them.

I used to work in call centers, loved it to be honest, most of the work was highly scripted and I did really well, consistently the best performer in the team and won company awards for my customer satisfaction and ability to see trends and patterns to repeat complainers that nobody else considered, so was always the person to solve the issue, highly regarded and colleagues would come to me for advice. I ran initiatives about problem solving within our interactions and took on additional duties like helping create a universal platform that my colleagues could use.

You would think I'd be fine with phone calls, but if I am not expecting a phone call and haven't had time to script, I can't speak. I was diagnosed with selective mutism shortly after my autism diagnosis. I miss important calls about my debt, appointments and sons appointments because of this.

I just want to say that if any of this rings true to other adults you can request a social care assessment as is your legal right as a disabled adult. I have been assessed and I am waiting for the allocation of a personal assistant to take some of the burden off my family and help me keep my life admin on track, as well as have someone with me so I can make independent choices about leaving the house to do things without having to take an entourage with me. Adult social care also said if I lived independently they may also be able to help in the way of cleaners. I understand it's a postcode lottery, but I just wanted to make everybody aware that if you're diagnosed, and disabled then you can request an assessment. Whether you'll be offered anything is entirely down to the outcome of the assessment though.

Absolutely there is a spectrum and if you cannot live independently then you should 💯 have support.
However, I don’t think we’re doing people like op’s son a favour by telling them they are disabled and their struggles are on a par with someone in a wheelchair.

How do you define "disabled" then - my ND DS typically takes 5-10 times longer to get dressed in the morning than his NT sibling if indeed he can manage it at all without support. If someone had a physical mobility impairment that meant it took 5-10 times longer to get dressed and they sometimes couldn't manage it at all then I don't think anyone would dispute that was was disability.

How old is he?

My 10 year old DS is high functioning autistic. Very bright but OMG so difficult when it comes to doing something that isn't routine.

Leaving the house is a nightmare. I find post it notes with check lists work well (or a whiteboard so he can tick things off). He HATES having an instruction repeated as this results in him digging his heals in even more.

His refusal to cooperate means it affects his two siblings who get fed up waiting for him to get ready.

It's really hard but you need to remember not to shout. Although even if I use firm voice then apparently that is also shouting.

Sounds exactly like my husband. I really struggle too but when we’ve returned from a break that had elements of this - and cooled down- I sat down and said I want to try and work out ways to understand what it is you find hard, work out strategies if we can, and develop my own response if we can’t.

things that have helped: checklists that don’t change eg a basic packing list with add ons for Christmas or summer; very clear timelines and reasons (start x so you’re finished by y because z); separate bathroom stuff so he can pack in advance as he needs to do it all at once or he can’t remember what’s gone in; a clockwise method of checking the room when we leave a hotel; body doubling can work but depends on his existí bf anxiety level which is higher going away than returning.
managing myself eg giving myself a book and a hot chocolate break instead of getting frustrated and trying to remind myself he’s doing his best

this is also with a grownup and it’s hard so make allowances for his age too