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.

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I don't know specifically and am just about to go into a meeting but if you Google neuro wilde and pictures she has some amazing resources/suggestions for ways to talk to your child about assessment/diagnosis if you've not seen already.

They do need 2 clinicians to diagnose a child but you day they've already done that bit.

Good luck.

I wouldn't be particularly worried - a practitioner alone isn't qualified to diagnose so I would expect a psychologist or psychiatrist to be involved. Good luck!

Thank you @RavenLaw do you think with the consultant being there that we are going to get a diagnosis of something? They have assessed for autism and ADHD. The community practitioner said they usually just write to you within an autism diagnosis, but they have to have a doctor there for ADHD. I thought okay, but it has worried me when I saw that this isn't just a doctor, but a consultant child and adolescent psychiatrist.

Please please don't be worried. You've done this process, gone for assessment, because your child has some needs that mean it was worth the effort of the process. Whatever they get a diagnosis of is not going to change them; who they are or what they struggle with. A diagnosis or a label does not change anything except to make a few doors a little easier to open, some support a little more possible to access.

I know how this feels. I was where you are five years ago. The diagnosis helped. The support helped. The label helped. It helped my little boy, and - if your child has a need that can receive a diagnosis - then it will help them too. Take deep breaths. This will change nothing about your child.

What I would suggest is that there are 2 adults at these appointments so that one of you can remove the child from the room while any diagnoses or comments are made. And take notes. Good luck

Thank you so much for replying, especially when you are busy
We haven't received the official diagnosis yet. Dc has been assessed at length for autism and adhd. The general practitioner said a doctor has to be there when there has also been an assessment for adhd. I just didn't expect it to be a consultant child and adolescent psychiatrist. It is making me scared that they think dc has something wrong other than ND. I don't understand if we will get fhe diagnosis at the appointment, with the letter saying it is to discuss the assessment outcome, or later. I am scared of what will be said, because dc is only 8.
Thank you so much for the resources, I will take a look.

My best guess is to expect an ADHD dx in that case and the psych is there to discuss whether you want to look at medication. Emphasise that this is only my best guess though!

Do you know the name of the psychiatrist? You may be able to get an idea of their specialism by googling.

Yes, they need a psychiatrist to prescribe meds. Don't worry. My daughter used tocsee a psychologist at camhs re her asd but when she had an adhd assessment they brought in the psychiatrist.

This.

Thank you, that is really reassuring. Ds has only just turned 8. He had a huge melt down last night, just when I thought he was doing better. There has been a change to his routine at school; dh and I think this may have triggered it.
He tells me he hates himself, that he is stupid etc and the whole thing is just heartbreaking. I use positive reinforcement, but I just feel like I have failed him as a Mother, because he still hates himself so much. I shower him with love and praise, yet it isn't working. He is intelligent and a lovely little boy; he told me yesterday that he was on his own at lunchtime as the little girl he usually plays with was playing with somebody else, and that he feels "alone", and "not normal." I kept it together, but sat amd cried earlier; he's at school.

I hope you don't mind me asking, but did your son see a consultant child and adolescent psychiatrist too? Is this all to do with neuro diversity? The school have interventions in place and the SENCO has labelled dc's behaviour as ADHD, but not the bolting hyperactive kind, he has symptoms of the other type; there is apparently two.

I think they'll have said 'doctor' when they meant a CAMHS psychiatrist. That's the type of dr that will make an adhd diagnosis x

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.

Thank you, would this kind of doctor come along even if they don't think ds needs meds? He isn't hyperactive and shows signs of the other type of ADHD with autism, seems to have a demand avoidance thing going on too. I honestly didn't know there were two types of ADHD. I was under the impression medication was to calm them down, which he wouldn't need.

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.

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

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.

Thank you, that is lovely, such amazing ladies on MN. It is really tough seeing ds struggle among his classmates who all just seem to breeze through life. The self deprication is definately the part I am finding the hardest. He told me he doesn't deserve love, is stupid, why did I want him, and will raise his fists to his face. He never would ever harm anybody else, it is always anger directed at himself usually. Sometimes he'll excessively tell me he loves me, but during a melt down he'll shout he hates me, then tells dh to go away, then he loves us again. It is draining. We just keep trying to support him and reinforce positively, lots of cuddles and chats.

I am so scared from a self harm perspective as he gets older. What on earth have I done/not done to mess my beautiful little boy up like this.
I agree, I want to make sure ds gets all of the help he needs, and the service has been wonderful, and they're being really thorough.

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.

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.

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

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

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.)

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.

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.