Support thread for children on neurodivergent diagnosis pathway

[freespirit333]

Hi all

I have a just turned 7 year old DS. He’s on the diagnosis pathway for ASD and ADHD, although I’m not certain what diagnosis he’ll get. I’m certain he’s neurodivergent but that’s as far as it goes at the moment.

He can be a frustrating, tricky, cheeky and overexcited, boisterous character. He can of course also be very sweet, very lovely, easy and great company.

His school are reluctant to put together an IDP at the moment as they don’t think he needs one, even though the paediatrician we saw virtually recently suggested it. The Paed suggested a watch and wait approach against the IDP, but DH and I want to press on with assessments.

How is everyone else finding the journey?

@supercali77 here you go x

Hi! I have a 7yo DS on the diagnosis pathway for ASD. I would be very surprised of he doesn't get it tbh. We have several family members with diagnoses and he definitely has traits. We originally referred him in July 21 and should have an answer by July 23!

He's currently OK at school but does anyone have any advice about EHCP? I started to look but got a bit over whelmed and gave up!

I have a 13 year old DD. We have been waiting nearly a year for an appointment. School have been useless (waiting on a transfer) it's just exhausting but we will get there!

Hi
I have 4 children. 2 are diagnosed and 2 on pathway.

Oldest girl is 15 and is on the asd pathway.

Then I have a 9 year old, she was diagnosed after 6 years of fighting.

My son is 6 and on the asd pathway. We are 3 years into it. I'm sure he get his adhd diagnosis first.

My youngest is nearly 3. She falls under a completely different team and already has a diagnosis of autism, global development delay, serve speech delay.

Our youngest 2 are the ones that we have the most support for. Our son struggles to access a education and is at home mostly. Our toddler is basically a 12 month old in a 3 year olds body. With some areas of development being under the 6 month mark.

Will get there in the end. But it's exhausting. I feel like I'm always on the phone regarding the children.

Thank you for all your posts!

It is exhausting, isn’t it? I don’t understand the process and it doesn’t help that it seems to be different for each child. So far DS has had a virtual appointment with a community paediatrician and a virtual sort of ADOS (but I found out it wasn’t actually a proper ADOS, as those are supposed to follow a set structure, this didn’t!) with a SALT. Both agreed that there are “differences”. The SALT picked up his attention/concentration a lot more (I’m certain he has ADHD, less so ASD but I think there are traits).

The community paediatrician wanted to wait and see but in the meantime ask school to set up an IDP (we are in Wales, they have replaced EHCPs, statements, etc). I didn’t want to wait and see because I’m well aware it’s not a quick process, hence the virtual SALT “ADOS” appointment which followed. Tbh I’m pissed off that it’s all been virtual so far! The SALT said herself it’s hard to tell about things like eye contact and fidgeting on video call!

And then in the meantime the SENCO is confused as doesn’t think he needs an IDP! He’s doing fine academically, and he isn’t hugely disruptive, it’s low level stuff when he gets in trouble (leaving seat when he shouldn’t, interrupting, silliness with friends).

So I have no idea where we are other than I’ve stressed I definitely want a school observation, as that’s where issues have cropped up. And the community paediatrician is going to phone me mid February!

@whoami24601 would the SENCO be able to provide you with any templates for an EHCP? Is it up to you to devise one or should a HCP or school do it?

www.ipsea.org.uk/asking-for-an-ehc-needs-assessment

I have a three year old and I’m waiting for his first assessment. We had a separate assessment with the health visitor to discuss if he needed a referral/assessment and they determined that he does.

I got one email from the service saying I should be contacted within 6 weeks but that was over six weeks ago. At the moment I feel like I’m waiting to be told the sky is blue. I know he’s on the spectrum, and I’m not worried about it, I just want to access the support.

He’s very intelligent, started reading at age 2 and now reads years above his age level. He has a “special interest”. He doesn’t avoid eye contact but also doesn’t seek it out and he has echolalia.

My only real concern is his extremely limited eating. Support and tips for NT “picky eating” simply do not work with him.

My DD got a diagnosis ADHD recently. school have been great but I don’t think the referral would have been made if I hadn’t requested it, as she is quiet and well behaved.
I work in a related field, I am an ADOS assessor myself and tbh I think the rigidity of it can be a disadvantage. I have only done assessments face to face, but a lot of places are offering virtual assessments more as they save a lot of time but also they can be less stressful and more natural for the child being assessed, although possibly to miss things that you may pick up face to face. I think a combination of virtual and in person appointments would be best but waiting times are so long.

My DD age 11 is on the waiting list for ASD assessment. School have been helpful but she masks completely while she is there so they don't see anything wrong. I find the whole system a complete mystery.

My DD 7 is also awaiting assessment, though CAMHs refused at first because they don't seem to recognise the female presentation. There's some but that don't quite fit but given I have ASD and see so much of myself in her I'd be surprised if she wasn't ND.
After a truely awful start to year 2 school are now saying she won't get an EHCP as her behaviour has improved ( I think she's gone back to masking). They are getting her an EP assessment though, so waiting for that and the OT assessment before deciding whether to apply anyway.

Sorry to hear about your DD's bad start to Y2 @Jules912 . As far as I know my DS is pretty happy in school (also Y2) but I'm worried about this changing as he gets older. His Y2 teacher is my favourite so far, I think that makes a big difference.

We don't have anything formal in place in school either, the Paeditrician suggested an IDP and we could monitor his progress against that, but the SENCO doesn't think he needs one. Waiting for the SENCO to get back to us about that now!

Thanks. School think it was a combination of new classroom/teacher etc and expectations ramping up in year 2 meaning she couldn't mask any more. She did say there was more of a jump than usual as they'd gone easy in year 1 after the disruption of their reception year. Mind you I'm still dreading the same situation next year.
Her teacher has been really good but she's an ECT so think she was somewhat out of her depth.

I have DD2 who we paid for a private ASD diagnostic assessment on as she masks in school but was experiencing extreme anxiety at home. We also suspect (well it's glaringly obvious) inattentive ADHD but we were meant to be waiting for that on the NHS as the logistics of shared care arrangements if we went down the private route and medication was advised were hurting my brain - I need to check the referral was ever actually done to be fair on that one... and DD1 who is waiting for a neurodiversity assessment - it's either ADHD or ASD or I suspect probably both. Ironically - I share an office base with CAMHS staff!

We had to move school as DD2's masking and desperation to please made her such a dream pupil they refused to listen to the idea that she even HAD any SEND - her diagnosed dyspraxia was just her not trying hard enough with handwriting, her continence issues - no one gave a shit about, her need to fiddle - they took them off her so she just ripped holes in her face, and her speech issues (she also has verbal dyspraxia) - they told her off for speaking too loudly (she struggles to control the volume) so she basically became situationally mute. I complained about it - very politely (I'm an ex teacher and now a SALT so I was not exactly deluded parent making shit up) and got banned from the school grounds - so she's now at a tiny (15 per year) primary school and lots of the damage has finally been undone and she's just about chugging along at expected level - but struggles with higher level language skills still, inference and of course all those lovely social nuances of language!

I think last I heard it was pushing a 3 year waiting list on the NHS in our area - and friends who are paediatric SALTs have caseloads of 150+!

Hi! Having a crappy day here 😩

I have a 4 year old I know is ND but no Dx yet. She's due to be assessed for ASD again this year, she was assessed last summer and basically got inconclusive. She has sensory processing issues which is killing us right now, meltdowns because she's cold, meltdowns because no coat is comfy. I have a 1 year old who it's not fair on to stay in all the time so someone's losing out whatever we do.

Didn't apply for school, it wouldn't go well, nursery was awful.

Hi
I have ADHD and a 6 year old son who we also suspect has it. School are brilliant with support and we are awaiting an assessment. He has a group educational psychology season each week with all the SEN kids in school which helps. Just joining the thread for support really. Hope that's ok?

Sorry for your crappy day @olderthanyouthink . I have those sometimes, mainly around how overwhelming I find navigating the referral system, pushing, nagging, advocating. All whilst working and looking after DC. DH is a great dad and does a good fair share with the kids but he also has inattentive ADHD and just isn’t proactive/organised/pushy enough to navigate the referral systems and chase school so it mainly falls to me.

@CoffeeWithCheese my DS also has continence issues, he’s permanently on laxido and dulcolax and still has issues, has done for over 4 years. Didn’t realise that was linked to dyspraxia. His writing is also very poor.

Of course @FizzyStream , welcome.

How do your DC get on in school if they don't mask much? I don't think my DS masks hardly at all in school, he seems to be the same in most settings. Which on the one hand I'm grateful for because we don't have big meltdowns from keeping it all in. But I do get despondent about his behaviour at school.

We have a contact book on my request which his teacher fills in weekly about how the week has gone (otherwise I was getting no information, he's not violent and doesn't do anything extreme so it would all wait until parents' evening where we would get 10 minutes).

This week he has been answering crossly to the teacher if she tells him off or tells him to do something, saying "FINE" in an angry way. This isn't brand new and defiance has been a common theme since I can't remember. But I'm so despondent as he's been doing this on and off for so long. He's pretty snappy and rude at home, when he's not in a good mood/something doesn't go his way.

I struggle to think of the reason for this too in terms of his neurodiversity. Inability to regulate emotions? Complete lack of awareness around authority figures? I find it so hard to rationalise too as in his clubs like swimming lessons etc he's very polite and there's never been any issues. I know he is more familiar with his teacher and is under more pressure on a school day as opposed to a short swimming lesson which he enjoys.