Refused an assessment ASD and ADHD

[Mumofthebrood]

My daughter is 9, masks very well hut is burning out. She has been high needs since birth, Always been sensitive to thing like labels, clothes, socks, shoes on the right way, lining things up, toys being put in the right place, lines, etc. She's also highly intelligent. She taught herself to read at nursery, she creates maths problems for herself, etc. She also has epic meltdowns at home and tells me she struggles to be "at school child" and it males her so tired. At home , she meltdowns daily for hours at a time. She cannot cope with much. She fixated on Minecraft constantly. Her behaviour is getting worse and her mental health is plummeting.
I got a letter through this morning saying unless she refuses school, her education suffers or her teachers notice a change, the nothing I can do. Think is, her assistant head agrees... she'd never miss school or have a meltdown at school because she's high functioning abd incredibly intelligent. She masks so well. Too well!.
What can i do?
Sorry for all the typos, I have a poorly baby on me xx

The
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So can one of my DC who us also high needs, but there is demonstration of high needs (full DLA), he can't go to school, meltdowns are violent, self harm is massive etc.

It's entirely possible OP's child is high needs and struggles significantly across several domains but there's a certain problem I've noticed professionally and personally recently. One example is a friend who is really upset her son won't get an EHCP because he's slightly behind on his reading. It does actually cause problems, it's not just nitpicking. Really sorry if it came across that way.

Yep. Imagine coming on here and telling us what a dangerously incompetent piece of shit your relative is, like you're proud. That's the sort of thing you should be ashamed of and not mention, frankly, rather than mentioning it as though your relationship to his stupidity means you've got some idea what you're talking about.

JustSettleOnAUsername
It’s ok I’m just getting tired of the rhetoric from some who crop up on these threads who seem to think high needs just means non verbal and in nappies. It doesn’t.

Hmm, if school are behind you it seems strange they would decline.

Being highly intelligent isn’t a symptom of ASD, that’s a misconception. Getting obsessed with maths is a symptom but flourishing at school in all areas is not at all.

@50apd15h completely agree! In fact my DC who is verbal and continent has higher needs than my DC who isn't.

I am actually slightly worried about the opposite though - children who are definitely struggling being described as high needs or complex when they probably just need a diagnosis, some acceptance and some reasonable adjustments that we should all be giving them anyway.

TBH, maybe you and your uncle need to educate yourselves better, in the UK ADHD has been running underdiagnosed for decades. It is estimated around 5% of adult population worldwide, and similar in the UK, have ADHD. UK diagnoses over the years were in line with 1.2%-1.4% UK adults. So do your maths. No wonder it's a struggle and awful attitudes from some GPs if they're so undereducated and prejudiced.

They haven't declined the referral because they don't think she has asd/adhd, they've declined it because she isn't in crisis at school.

@Livelovebehappy · Yesterday 22:43

“Tbh, maybe she really doesn’t fit the criteria for ADHD/ASD? My uncle, who is a GP, has said that the volume of people he currently has coming through his doors looking for an ADHD diagnosis, is off the scale. A big increase also in adults. A lot try to use the fact that they display some of the signs to get a diagnosis, because they want a label. But quite often, the signs are due to other factors - sometimes people in general just find coping with life very difficult.”

My DD struggled through childhood and a friend who’d had a diagnosis for ADHD recognised her symptoms and encouraged her to seek help.
NHS GPs CAMHS, adult MH services were all very dismissive.
We went private and went through 2 assessments … one general to exclude something else, then the ADHD assessment.
Diagnosed by a consultant psychiatrist as per DSM guidelines.
She was diagnosed in early twenties which is very poor, given that we’d tried to get help from NHS for several prior.

Now on treatment and and her life has been turned around.

Your uncle( and many other GP’s) are so poorly educated in MH and need to get their training updated.Their lack of knowledge in this area is breathtaking and unacceptable and impacting on patient care.
Sad thing is, they think they know best but they actually know fuck all !
Dinosaurs …

I hope you manage to get some help for your dd OP.

no MRIs that can be used to confirm a diagnosis of ASD or ADHD, or a myriad of other neurodivergencies

oh yes there are. For ADHD at least. Steven Bartlett recently posted about his diagnosis by MRI.

https://www.ajmc.com/view/brain-mris-can-identify-adhd-and-distinguish-among-subtypes

My 3 year old autistic nephew, his mum and my mum are taking part in research into autistic brains and all had MRIs, blood tests, gene sequencing and all sorts to help scientists find more effective diagnostic tools and support.

@elliejjtiny yes

Would just like to point out that not all GPs are like the uncle posted below. Our GP is superb and thankfully far more ND aware and understanding - as he should be.

I suspect this may be common with CAMHS. My friend's son had his assessment last week and his autism has been confirmed. He was referred to CAMHS in summer 2017. He had no meaningful input until the GP got in touch with CAMHS to say that he was much worse than at the time of referral and then he was moved up a tier. This coincided with friend putting in a complaint, which is still being investigated.

He's 16 and hasn't been to school since the first term of secondary school. The LEA placed him in a "teaching and learning centre", but it was on a big, noisy secondary school site and he couldn't cope with it.

The lack of resources for CAMHS is nothing short of criminal imo. Lives are being ruined by the lack of early intervention. And it's a false economy, because people end up with lifelong problems when early help would have prevented them or reduced the impact of them.

If I was in the OP's shoes, I would beg, borrow or steal to get him assessed privately.

I’m sorry, this sounds really frustrating.

You say school believe you, which is great. So can you work with them and your daughter to identify what she is finding hard and then put measures in place together at work and home to try and help?

I didn’t say people should have to provide physical evidence for a diagnosis. Where have you extrapolated that from my post? The belief that no one would play the system is very blinkered. People can and do play the system for myriad reasons. Have you not heard of Munchausens / Munchausens by proxy syndrome?
A great deal of my time is spent pushing for children to receive support for their ND needs - be it getting assessed for dyslexia / dyspaxia, getting appointments with SALT, managing children who have been deemed as meeting the criteria for special school within the mainstream school as there are NO places in our LA for them, the list is endless.
The SEN support for children is absolutely fucked now, it’s reached epidemic proportions and no one seems to be able to see the wood for the trees.
By its very nature, a divergence is a difference from the ‘norm’ whatever than norm may be. Through thorough assessments, more people are being identified as being neurodivergent. Therefore statistically, if the ND is identified in greater numbers of the population then there will come a point where that will become the ‘norm’. Why would that be seen as a bad thing? Society arranges itself around the needs of the majority - as does the education system. Special schools arrange their education around the needs of their pupils. The balance is skewed in favour of mainstream schools. It needs to be tipped more towards SEN schools, of that I have absolutely no doubt.

I think that some places say that the symptoms have to show in more than one place. So if they're not showing in school or another setting as well as home they won't diagnose.
Obviously this is rubbish as a lot, especially girls, mask.

Agreeing with what all the helpful people above that I e read have said. Also, check your local authority Ordinarily Available Provision and work through it to be sure there is nothing else the school can do for support immediately. Very few schools could honestly say they are covering it all.

good luck. My DD didn't get a diagnosis till university and her mental health really suffered for years before.

I've not read all the replies, and I'm in Scotland where I appreciate things are different.
I'm going to give you the advice I wish someone had given me 5 years ago.

It does sound like your DD is ND, you need to move away from the focus on needing an assessment/diagnosis to support her. Having a diagnosis means very little in practise, you go through years of waiting for an assessment - eventually get a diagnosis - but then you are discharged with no support!

So, for now, focus on your DD and her needs. If you possibly can, get her a good private therapist who has experience of ND kids. She may only need a small number of sessions but it will set her on the right path.

Very objectively look at her behaviours and see what they are trying to tell you - and then adapt accordingly (I'm sure you are already doing this to a great extent already) But stop worrying about screen time or forcing her to do/eat things that she finds difficult. Let her wear her pants inside out and back to front....whatever it may be. Try to remove as many barriers as you can for her.
Pick your battles carefully. Your role is to be a safe haven for her so that she can regulate as much as possible after using up all her energy at school.

In terms of school, you do not need a diagnosis for support to be given. Speak to her teachers to identify things she finds challenging and agree a plan/accommodations that can be put in place for her.

And never be shy to disagree with people and FIGHT for her.

Best of luck, you can do it xx

Soontobe60 · Today 09:19
ND is in no way going to become the norm. How ridiculous.

MBP is rare 1%. To infer that MBP is rife instead of struggling parents battling a broken system is just shocking in your alleged line of work.

OP my nephew went through the same and is also fixated on gaming. PM if you want advice

Our daughter is adopted and adhd runs in her genetics. We had lots of masking at school and meltdowns, and the senco told us in Y5 not to label her.

Cue lockdown and things deteriorated. Luckily we got support via a social worker and she was diagnosed with SPD, dyspraxia and various other things, but it didn't cover adhd though in the report it was stated it was a high possibility. Back to Y6 and the bullying started and self harm and suicide attempts. Y7 was also hell, we've since found out her report was not passed on to the SENCO so she was struggling with teachers and more bullying and developed anxiety tics.

We paid for a private assessment with a paediatrician (who also works in the NHS) and she was diagnosed in Y8. She's finally on meds that are helping, school is still difficult but getting better. Now looking at getting an asd assessment, at the request of cahms and our social worker. At least now in y9 we have hope for gcses.

However our private consultant's secretary has said they are turning people away as demand is so high. I think the inset of puberty triggers a lot, especially with girls and I wish we'd had more support earlier.

I agree with every word of this.

"High needs - to me at least - describes children who are still in nappies at secondary school, in special school, smearing faeces, or mental health so bad they never leave the house at all etc. I think it all becomes a bit unclear if everyone describes their child as high needs or complex."

DD1 is described as 'high needs' and 'complex needs'. She is continent and verbal. She attends special college with 1:1 inside and 2:1 on trips.

I think 'complex needs' means a very spiky profile more than 'general high needs'. It is the spikiness of DD1's profile that makes her complex. She can discuss the iridescence of a car's window, or a rare blue banana in one situation but can't even identify her emotions in another. She can tell you that a car is coming and to watch out in one situation and yet would walk in front of a car if she saw something shiny. She can't be left at home alone at all (18 years old next week). She needs assistance with washing. She can't prepare food independently. I could go on.

This is why ASD is such a minefield. The diagnosis doesn't tell you anything about the person. Much like Downs Syndrome - the range of disability that arises from it is vast.

@Soontobe60

https://111.wales.nhs.uk/encyclopaedia/f/article/fabricatedorinducedillness/

"One study published in 2000 estimated 89 cases of FII in a population of 100,000 over a two-year period. However, it's likely that this figure underestimates the actual number of cases of FII."

Ok, so let's double it. 178 cases per 100,000.

https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00045-5/fulltext

"As of 2018, 2.94% of 10- to 14-year-olds had a diagnosis (1 in 34)"

1 in 34 is approximately 2941 in 100,000 people.

178 Vs 2941.

The medical adage "When you hear hooves, don't look for zebras" applies here.

If your daughter is managing school

OP’s DD isn’t managing school. She may be physically present but she isn’t managing. If she was managing and ‘fine’ in school she wouldn’t be experiencing the coke bottle effect and her MH wouldn’t be plummeting as a result. Forcing a child to attend an unsuitable, environment with inadequate support is likely to cause further trauma.

As others have posted I would request an EHCNA. Don’t let anyone put you off by telling you, you can’t get one for a child who masks &/or is academically able, you can. In the meantime, if DD isn’t able to attend school because of her MH, once it becomes clear 15 days will be missed (don’t have to have already been missed or consecutive) the LA has a duty to ensure she receives a suitable, full-time education.

Exactly this.