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

[MinticecreamwithaCherryonTop]

We have a face to face appointment for us to receive feedback, and the outcome of our child's lengthy CYPS assessment. We have been asked to bring our child along to this, and advised that it will take an hour.
The only thing is that this appointment isn't just with the community practitioner from CYPS who has fully dealt with the case. It is also with a consultant child and adolescent psychiatrist.

What does this mean? Should I be worried? Has anybody experienced this as part of the ND diagnosis process?

Thank you.

I apologise for attaching this thread to AIBU, I have done so for traffic.

If you don't mind me asking did you get a diagnosis for your son? The other aspects are bad enough, and I can deal with them; the self deprication however is absolutely heartbreaking, and distressingto see. This is the part I am absolutely struggling with, regarding how to help ds. I have been researching autism and ADHD, as well as D.A.D, SPD, among other coexisting things.

I am using positive reinforcement, staying calm with ds, doing all of the things the websites tell me to do. None of it is working as still he hits himself in the face and says he is stupid, hates himself over the tiniest of things. Ds makes angry faces at you and sometimes gets really aggressive, not violent with you or anything, just so much emotion, and animation. He will also sometimes talk in baby voice; I remind him to use his.nig boy voice. He will tell me he is delicate, I tell him it is okay to feel that way, we all have days where we will feel a range of emotions. I do however reinforce that he is strong. He is noticing he is different from the other children at school. I tell him difference is good.

One occasion, he was holding his finger under the hot tap, not enough to burn, but as a form of self punishment. This is the part I am confused about. Is this part of ADHD or a separate psychological illness. I don't feel I have failed ds for ND, of course not, I will however feel this way if he has something unconnected.

I don't know how to help him, and the appointment cannot come quick enough.

Sorry about the typos. I wrote it fast and the edit function has ran out 🫣

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.

Thank you, I will try that. It does go around circles with, "I love you ds." "No you don't", " "Nobody can love me," then he'll say, "Well, I don't love you," then five minutes later, he loves me again, exaggeratedly so. I'm finding it mentally draining, and exhausting. He'll mask things at school, then come out solemn faced and it all comes out on way home/at home. He has a younger sibling who is NT, and it is becoming more difficult to balance. Dc2 is getting distressed, because they are finding it difficult to process why their older brother is acting this way. I have been explaining that dc1 cannot help it, our brains all work differently etc.

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

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.

Thank you for all of your helpful responses. I knew you amazing women, with first hand experience would be able to help. You can read all of the articles and do endless research, but sometimes just hearing from those who are going through it, is so much more helpful.

I have tried what a pp suggested, which is praising the small things, not just the end results. I thought I was already doing this, but on reflection, I have realised I am missing opportunities. I am finding that it is working well, he seems to be responding. I have also tried what another pp suggested in not engaging too much with the negativity, and this also seemed to shorten it. I am acknowledging it, replying with something positive and a little chat. If it goes on beyond this, then I disengage, because we go around in circles, he gets worse, and it doesn't help; it fuels the fire if anything. I think when ds is realising he actually gets more attention not doing this, something is clicking with him.

I did notice after the huge autistic melt down ds had, there were sort of ripples for the two days where he just wasn't himself, he was angry at everything, and in a very heightened state. I haven't seen it last this long before; maybe it is an age thing? He is 8.

Now suddenly he is back to himself and acting a little more resilient and not as easily triggered. He is a bit calmer, and not taking quite as much offence to everything. I'm not sure how long it'll last, but it is nice to see him at his usual ND level which is still tough, but more manageable. It gives me a little hope.

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)

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.

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.

Thank you so much for your lovely, kind reply. It is reassuring to know that your son was similar and that he is now doing better in his teens. The teenage years are definitely a worry of mine for him, with the pressure of school and exams. The self hatred is soul destroying to witness. He is such a sensitive little soul, and gets upset by certain colloquial jokey comments people make, and takes it literally. This can mean he gets upset at school quite a bit, or even with his little brother, who is trying to have fun with him.
Ds has been saying to me lately, "Mum, why do I hate myself?" I have been answering, "I don't know. Why do you hate yourself? We all love you, etc." It is difficult to know if I am saying the right thing. I just try to validate his feelings, while also reinforcing that we all love him, are here for him, and think he is great and lovely to be around.

I'm trying to be somewhere the middle, not permissive, but not authoritarian either, with both children. I know what works for my NT child won't work for ds though, and starting to understand a little better; definately a long road, and a lot further to go. I have found making a few changes, like leaving his homework out, and saying to do it when he feels he wants to, rather than telling him he needs to do it at a set time has improved things. He seems to like that control, and knows he has a week to do it. I give him gentle reminders, "It's there when you want to do it", and we have some sweets together while I'm ironing or pottering, and on hand to help him (which is quite a bit if they're set questions/gaps to fill in sentences), if he gets to write his own sentence for example he is happy. We make jokes again as he does it which helps. It is still difficult, but helping a little. Humour is a huge outlet for him, it is easy because he has a dry sense of humour like I do. It is still really hard for him to stay on task, unless it is something he is interested in though.

Ds has been a lot better in the days since I started this thread, but I know that anything can trigger him, and I'm on guard for it. Talking to him before sleep and making him laugh with stories, or our little chats seems to help him get to sleep so much better, that, and his weighted blanket. Although last night he went to bed too late, due to his younger sibling. As a result, I'm weary of how he'll be at school pick up.

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!