To be sick and tired of neurodivergence being the exchse

[Easterbunny23]

My DS8 is suspected ASD/ADHD.

He is so defiant and oppositional, has been since he was a pre schooler. He has to be carefully managed at school and at home these holidays he’s been a nightmare unless we’ve been out doing fun things constantly.

He winds his little brothers up constantly. He takes forever to do anything we ask him to do if it means stopping something he’s doing. He’s rude, calls us names like “meanie”, he’s rude to grandparents, telling them he doesn’t want to come to their house with no regard for their feelings.

He can be so mature and kind, he sometimes apologises off his own back for not listening/being tricky/moaning.

It’s clear he is ND although we don’t know his exact diagnoses yet.

But I am just sick of his awful behaviour. He’s so grumpy and sullen and tries to spoil things his brothers enjoy.

I am at a loss of how to discipline him. Currently reading lots of different books - 10 Steps to a less defiant child, emotional support for your ADHD child, that sort of thing. No answers yet unfortunately.

I think you are right in your approach and it's totally valid to feel exhausted by it.

However, his behaviour is due to the asd/adhd so try not to take it personally/or feel it makes your parenting inadequate.
Equally, you should discipline him. I'm a senco and we still discipline so children learn right from wrong.

https://www.adhdfoundation.org.uk/services-for-families/

I know this might be left field and unwanted advice, so ignore if it is BUT my eldest was being investigated for ND (suspected ADHD and ASD). He then unrelated got something stuck in his ear and needed to go to ENT where is was found he had enlarged adenoids, enlarged tonsils and glue ear. He had no "normal" symptoms (hearing loss, chronic infection, sore throats, recurring ear infections etc). They removed his adenoids, tonsils and enlarged his sinus cavity and gave him gromets. He's still a bit "odd" but he's no longer defiant, oppositional, rude or as hyperactive. He's still more hyperactive than his peers and is a bit sensory avoidant but nothing that can't be managed. He may still turn out to be ND, but it's so much more manageable than before.

It sounds like you have got into a totally negative spiral with him. Have you ever counted up how many times you tell him off/ criticise his behaviour and how many times you praise him. We were advised that you should praise seven times more often than you tell off by an educational psychologist. Not sure we ever achieved it but at did it make us think a bit more about how the ds's were feeling to be always being nagged at. Mine were always better on a 1:1 basis than they were together so another thing would be to try and do this when you can.

You need to change your thinking. This doesn't mean you can't express your frustrations, burnout and stress, and speak freely to trusted people, but coming at this through the lens of "excuses" is only going to pile more frustration and tension into the situation.

Autism and ADHD (I have both, NHS diagnosed) cause far reaching implications, beyond simply the primary "symptoms". The surliness, rude behaviour, low mood, etc., come from a person's own burnout, exhaustion, constant confusion, constant sense of being out of step with the world, etc. It's not about what's an "excuse", it's about the reason why someone's acting the way they are.

All that being said, your own feelings and needs (and those of your family) matter just as much as his. You need boundaries in place for behaviour and treatment in the home and between people to protect all of you and your relationships. Focus on all of your actual needs, rather than on what can be excused and what can't. The excuses road is a dead end.

We have a 13 year old family member like this. His Mum is currently pulling her hair out and I feel so helpless when she tells me what they are currently going through. He's extremely rude to everyone, has no friends at all as although people have tried to build friendships with him he won't allow it and he's just rude to them. Sounds like an awfully lonely place for them as a family, not sure what help and advice she could even get from anywhere 😰

My eldest DS is like this and I’ve never found any way of managing his behaviour. I’ve tried every approach and nothing works. He can be nice but he doesn’t deal with stress well and he becomes angry. Anything anyone says makes the situation worse.

He is ND but I am too, as is his brother and we’re nothing like that. The genes are in different combinations and their dad is a mid-range narcissist with little self awareness so his genes are in there too.

I’ve explained time and time again that if he’s nice to people, they will be nice back but it doesn’t seem to compute.

Thank you for saying this! I have autism and ADHD and always say that it is an explanation, not an excuse, and I take responsibility for my actions.

And I am so sick of MN pathologising everything! And don't even get me started on "I think I'm autistic..."

My eldest has ASD and ADHD. PDA, and just extremely challenging in general but has a very high IQ, hugely academic and intelligent and unfortunately hugely manipulative. I feel guilty to say it sometimes but it’s a huge problem I don’t know if we will ever overcome. I can’t seem to address it or deal with it, I certainly can’t raise the issue or it’s like ww3

I used to tell my dd this all the time but she had no desire for anyone to be nice to her so has zero motivation to behave in an appropriate way 😭

Hi
We have a rule list we made together. So our has
We don't say swear words to people
We don't hit each other
We don't say things that we know will hurt someone's feelings
We don't scream in people's faces

Some have consequences (which they know) such as a warning (encourage them to go take a time out) then if continue its loss of electronics time/tv time/bed earlier (things we know they don't like loosing).
If its something bad like hitting someone or saying deliberately cruel then they are sent to take a time and loose their phone/tv etc for ser period of time.

I do understand, dd is autistic and tricky!

She's grown up now but I was given advice when she was still at preschool to set boundaries and not to give in with behaviour. We did not accept her autism as an excuse for poor behaviour, especially violence towards her younger sister, we didn't accept defiance or arguing etc and we expected her to behave. We weren't 100% successful but the setting your boundaries for behaviour seemed to be excellent advice.

Thank you @gogohmm . When DS got home yesterday (after an excellent day with Grandma, surprise surprise!) I sat him down and told him kindly, but firmly, that he cannot be rude to people like that. I explained why it was rude, why it would've hurt her feelings. I emphasised it's fine for him to FEEL like he doesn't want to go to Grandma's house, and that it's fine for him to tell mum and dad beforehand, but it's never ok to be rude to someone like that. I said if it happens again, there will be a consequence. He accepted the chat with no issues but will see if it happens again.

DH and I also chatted about why he might've reacted like that - DH has ADHD so he suggested that DS might've been "in the moment" and didn't even think about going to Grandma's until the second she arrived - then his thought process would've been that he didn't want to go, turn morning telly off, leave the cosy house. We vowed to next time prepare him for it (he knew he was going, it was no surprise, but I understand a trait of ADHD is that you live in the here and now rather than acknowledging future plans).

It's so hard though! Especially when your child doesn't yet have a diagnosis and it's really not so clear cut for him, he doesn't quite fit all of the boxes for anything but it's enough for us to know he is ND.

How do you do that though when your child refuses to go to bed? And when they're so on edge that taking away the video game they're using to emotionally regulate will lead to a meltdown that could end up with someone in hospital?

Neither do I. It feels very much like blame - like saying “you’ve caused this in your child”.

My son has just been diagnosed with ADHD yesterday and it’s really hard not to blame yourself. It’s as though some people are desperate to make it your fault, when in fact it’s a genetic condition.

A love of screen time can also be a symptom of ADHD rather than the cause.

I also hear what you’re saying about interactions with grandparents etc which can be the really hard bit - their generation has been brought up to think “oh this is bad behaviour” and it’s difficult to change their thinking.

You can’t deny though that there are plenty of people who have adhd that have trauma histories. Sorry if you don’t like that, or that offends you but it is most certainly the truth. Trauma will shape your brains attention capacity along with a whole host of other afflictions. Take children with attachment disorders, they pretty much all struggle with their attention spans.

Nd children can be naughty too. And bloody clever about it.

Things I've found help. (But still get wrong sometimes) try to prevent dysregulation. stay for a bit only. Keep well fed, keep hydrated, regulate temperature, Do keeping calm activities and OT regularly.

You have to lead up to everything. We gave a very structured household due to all kids be ND (and possibly me and dh lol)
I use lots if parental controls on video games so they know they lock out x time. Usually 2 hours before bed time. Then they are allowed 30mins of watching their fav tv programme in their room. Then we usally play their latest obsession before bed so lego or boardgames.

Yes there meltdowns, we have lost a couple of tvs. Wrapping a duvet over mine and handing them soft toy helps one of mine and gently restraining.
We try to head everything off before it gets to that heighten level - hence rules and structures.

Really depends on age. Mine are older now so very used to routine and structures we have.

If they have lost electronics. Then we usually engage in boardgames or lego.

We use lots of other thongs to emotional regulate. Like mini trampoline, we have huge box or fidgets and sensory things that lives on our time out spot or cool down zone aka giant bean bag. We encourage them to use it if getting disragulated.

I found the book 'the incredible years' really helpful. I did the parenting course that goes with it. It's designed for kids up to age 8 I think but I found it very useful for my older kids too as ND kids tend to act about 5 years younger esp adhd.

wait until he's an adult, Ive seen people here blame it for affairs, obesity, you name it

Well I'm sure all the conflicting suggestions on here are really helping matters 😁

Not sure I'll help with a completely new one, but I'll try anyway. I think Dr Russell Barkley is the absolute best resource on ADHD that you can find. He knows the research inside out and back to front and he has a knack for explaining it accessibly. There is so much pseudoscience around about children's behaviour and about ADHD. Russell Barkley says that there are basically four pillars to effective ADHD treatment.

First diagnosis, you want to be sure that it really is ADHD and whether there are other issues alongside because these things can all dramatically affect your approach.

Second is education. Learning as much as you can about how the ADHD brain works. Again beware, because there is a lot of oversimplified information, but the more you read or listen the more you'll hear common threads and come to understand what the consensus is.

Third is medication. This is where he gets a little bit of criticism because he's not a totally unbiased source, he has done research for some of the medication companies. But the overall sense of his information is extremely good so I don't get the sense he is just shilling medication for the £££. I feel he has real passion to help families and people with ADHD understand and live with the disorder. Most parents have understandable concerns about medicating children, but most are short acting and you can easily see whether they are effective or not and make a decision based on that info, rather than on fears about what it might do. You want to do medication before step four because a lot of the time, interventions are most effective when done alongside medication.

The fourth pillar is accommodations, IN the environment, AT the point of performance. ADHD is not a disorder where the person does not know skills and needs to learn them so that they can apply them. Often the person with ADHD knows exactly what they should do, but they can't make themselves do it because of executive function deficits. So controlling the environment to account for this, immediate rewards and consequences for example, scaffolding, frameworks. Reminders. Somebody else checking up on whether tools are being used. This kind of thing really helps.

Russell Barkley has a book for parents with all this stuff in called taking charge of ADHD, but if you don't want to commit to buying a whole book, just put his name in on YouTube and it will come up with academic talks he has given all for free. They are a really useful starting point and introduction to his insight, then you can decide whether the book sounds useful.

I get your pain but I don't like the thread title. It's not ok to be sick of ND being the reason when so many people are trying to get out and about with their ND kids and just praying that the public's patience, grace and tolerance holds so they can exist without hiding their children away. You're being unreasonable but I understand why.

My autistic son says things to get a reaction, I think of it like sensory feedback he enjoys. He will keep on until the other person gets annoyed or he gets punished for his usually then ends up in meltdown.

For instance there’s a strong link between screen time and ADHD symptoms in boys. That’s because screen time can be really helpful for kids with ADHD, it’s very engaging in the way most of life isn’t for them. So kids with ADHD are drawn to screen time, it doesn’t cause symptoms.

I think I see parenting a child with autism or ADHD as like tending to orchids - they need a lot more work than the average ‘flower’. It sucks but there it is. We have to massively step up as parents to help them, and we will get next to zero support.