Please help me understand what is happening? (Neuro diversity)

At 5 DS asked why his brain worked differently from other people's.
At 6 he asked for medication to make his brain better.
He's not diagnosed (inadequate info from primary school, despite having years of plans and assessments, they didn't submit it) but primary and high school always treated him as if he has ADHD and put support in place.
He's now an awesome teen. He has friends, he hangs out, he knows lots of people like him, he knows his brain does some things brilliantly (multi-dimensional strategic thinking) and is rubbish at other things (totally time blind and dysgraphic). If you can engage him, he'll give you everything. If he's not engaged then there's no chance.

He quite liked the Dorling Kindersly book on Brilliant Brains. It explains a range of ND diagnoses as just differences, not deficits.

He can accept help - but usually only at the last minute once he's literally thrown his toys out of the pram with overwhelm. Talking through strategies when he's calm, and picking up the pieces and just getting everything together when he's not, has been our approach.
Consequences are meaningless to an ADHD brain. The wiring struggles with cause and effect. I also tend to assume a level of developmental delay with ND kids. It gets better,but generally a couple of years after you expect it should have done!

My son hated himself in just this way when he was 8. He's now in his early teens and is doing so much better. The support, strategies, understanding and everything we did - exactly the same sort of things you're doing - helped him. It's a long path but he's a delight most of the time now and treats himself much more kindly. He's also very empathetic, kind and loving towards me when I struggle. Which is a lot, lately. You're raising a whole human, not just a collection of symptoms and it sounds like you're doing all the right things and a wonderful job. The road is long but it is worth it for all of you. Much love.

Reconciliation gestures without talking about anything that happened are often better eg child storms off to room, 10 mins later mum comes up with a glass of juice.

Part of ADHD is dopamine seeking (as our brains don't produce enough of it) this can often manifest itself as seeking arguments or disagreeing and these then ramping up i.e. ADHD kid might kick their sibling - they don't want to, but they know they'll get a reaction from someone, there'll be some engagement / interaction and so it continues. Post the dopamine burst, they usually feel shit as they didn't want to cause trouble and now don't like themselves and so it spirals.

I will say (and this is based on a sample of me and DS, so I'm not speaking for anyone else!) that positive reinforcement and stuff like 'oh don't worry about x!' when in fact, I am actually worrying about X, are useless and send me into a silent rage. I find it trite and unhelpful and for some reason it really annoys me (haven't worked it out, am assuming its how to do with how my ADHD brain is wired)

Yup. Try it. You might have to adapt it as needed. eg in the love one. "DS, I think I would know better than you if I love you or not. Of course I love you. Go and put your shoes on as otherwise we'll be late for football."

It's literally like a break.

There was another thread elsewhere where someone was saying that sometimes their ADHD child only seems to actually stop when they lose it. And clearly, parents losing it is NOT okay. My theory it's a bit like the swimming rescue/first aid we were taught years ago - sometimes you have to slap the person to get them ot of their shock so they stop flailing around and potentially drowning not only themselvs, but you too.

Also sending hugs. This is nothing you have done or not done, you sound like the most committed loving mum.

Part of this behaviour may be linked to ND. And part due to age. My DD, just turned 9, tells me often that she thinks she is 'stupid' 'boring' and 'no one likes me'. When the reality is she is smart, kind, funny and popular, gets good grades, gets invited to so many parties and playdates etc. But at this age, there are lots of hormones, and social pressures and they start comparing themself to others, and everyone else seems smarter, or cooler, or prettier, it's a roller coaster of emotions, we never know which version of DD1 we are going to get day by day or hour by hour. We go from doors slammed in our face to hugs that feel like she is going to crush me and never let go

Sometimes for me with DS, I have to stop engaging. I find it really hard. He's in a spiral of upset and negative feelings and instead of reassuring him, I'm walking away. That can't be right surely?

BUT, I've learnt. When he's spiralling like this, the more I try to reassure him, the more it plays into his negativity. So if I can see this happening, I have to say, "DS, that's not true and I'm not going to listen to you being so negative about yourself any more. I'm going downstairs to make dinner."

Then, when he's calmer, I just make the point to reinforce the positive, "I see you passed your maths test this week, that's fantastic. I'm very pleased to see that you are making progress in this."

It's also about praising and acknowledging effort and improvement. DS is NEVER goign to be good at maths. That doesn' tmake him stupid. He has other skills. And if he can pass his GCSEs, that is a HUGE win. So I will praise him for passing a test in maths. I don't tell him he's good at maths. He's not good at maths. He knows that. But he IS good at rugby. So I praise him for scoring a try or for mastering that tackle or whatever.

When our son received his formal diagnosis, it was at a meeting with a paediatrician, an Education psychologist, and someone else who for the life of me I cannot remember. So yes, they could be giving you the formal diagnosis.

Kids can also be hyperactive but in a way that people don't notice. This is particularly true of girls. I could not focus in class unless I could doodle for example. My daughter used to tap her foot quietly - only a skilled OT picked this up. She also constantly asked to go to the toilet, sharpen her pencil, put her hand up to answer questions (even if she didn't know the answer).

I would suggest you read up on adhd because a lot of it is not what you think.

I am the classic adhd woman. Did well at school, masked like crazy, went to uni, got a corporate job - the structure kept me going. It all collapsed when I had children and no external structure.

It's different for everyone. I could only cope with work by not doing much else. A long soak in the bath every evening!

As well as adhd I would suggest you look into sensory integration too as the two tend to go together.

I have combined type ADHD.

DD has inattentive ADHD and ASD.

OP, it’s usually genetic, but you haven’t messed up your little boy. He just needs a different approach because he has a different brain.

You mentioned that autism has been suggested as well? There is no treatment for ASD, so those with both often find that medicating the ADHD just brings out more of the ASD which is harder to manage. But this is exactly why a psych iS involved in supporting diagnosis and potential treatment.

Whatever happens, diagnosis is power, because it allows you to better understand and advocate for your sweet boy.

(The ADHD_love couple have written 2 books which touch on the self-hatred which is common for ADHD adults that weren’t diagnosed as children. I think they’re great for identifying ways to ensure it doesn’t happen to our children, and to help them to shape a world that supports them, rather than hinders.)

Answering as a late diagnosed ADHDer with a kid on the pathway for diagnosis. There's 3 types that are commonly recognised - Hyperactive, inattentive and combined. You can take meds for any of the 3 and they are effective.

I'm combined; I think this and inattentive is harder for people to spot / diagnose as everything is internalised and masked, meaning on the surface there's no / little apparent challenges, as it's all seething internally and then often breaks out in rage or a shut down.

One interesting perspective is that kids with ADHD are often up to 30% behind their peers age in terms of emotional / social development, so expectations at their standard age group for regulating emotions, staying on task etc should be baselined against this.

Highly recommend you watching videos / talks from Dr Russell Barkley who has great and easy to absorb info on how it presents in kids https://www.youtube.com/channel/UC0tLWu7ljYVFPiZQfHjTMsA

ADHD inattentive is the other kind you mentioned but there is also another one that’s a combination of the hyperactive and inattentive.

Just to note that for the inattentive type of ADHD, meds can also be prescribed to help with focus and executive function. A loved one who takes these meds can stay on task and get through the work day with them. Without them, they say it’s like pressing the accelerator but the car doesn’t move because of a fuel problem.

OP, nicely, you really really need to engage with this apointment and then start the process of educating yourself. And you need to do it asap.
What on earth have I done/not done to mess my beautiful little boy up like this.

The suggestion is that he's ND. So you haven't done anything. What you DO need to do now is learn how best to support HIM so that his ND doesn't cause additional problems. This may well mean some shifts in your parenting. You may have to let some things go. You will have to work harder to find things that you can show him he can do. You will have to advocate harder for him at school and around family.

But the best thing you can do RIGHT NOW is to stop feeling like a victim and terrified of this process. It IS scary. It IS unfair. But as I said at the beginning - this is the first step in the journey to make things BETTER.

thi sis also why you need proper support during the diagnosis. So that they can explain the any diagnosis, what it means, what the implications ar and what, if anything, can be done medically or practically to support him.

f your child has either ASD or ADHD, you are at the start of a long journey to understand these things better. It's essential because a lot of people will have the same preconceptions you do and sadly, you're going to have to advocate for your child and support him a lot of the time with very little additional help (eg 1 my brother, barely involved in our lives etc, as soon as he hears over a meal that DS has been diagnosed with ADHD and is on medication responds with, "Ooh, you have to be careful about the long term side effects. Do you reall ythink meds are a good idea." The point being that he knows NOTHING about ADHD, he also knows NOTHING about DS. And he knows NOTHING about ADHD meds. But he thinks he has the right to a verbalised opinion. You will see the same. over and over again.)

So go prepared to ask lots of questions. Take notes if you need to. Ask for follow up info to be emailed to you - we've had book recommendations, website recommendations etc.

The psychiatrist might just just explain about the drugs to begin with. It will be up to you if you want to try them.

I think you are massively over thinking this. A specialist paediatric psychiatrist or sinilar would be a completely appropriate person to be part of any discussion of ND, not least because if there was a proposal for medication as that must be overseen by a professional. It would never just be a regular doctor doing this for an 8 year old.

I completely understand the fear here but getting an ND diagnosis is not like other diagnoses. The diagnosis kick starts a process to get extra support and to help you and your child to cope better going forward. You have identified that he needs support and ow you're one step closer to getting it. This is not a death sentence, but rather an opportunity for a wider, fuller, less difficult-to-manage life.

Just wanted to send solidarity and hugs. My son says exactly the same sort of thing. That he's useless, everything's his fault, he's bad at everything etc. It's heartbreaking and I don't really know how to fix it.

I don't know the significance of having a psychiatrist there - could just be logistical as they need two opinions - but I would say it's good either way, if they feel your son needs a psychiatrist input then he's getting it.