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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Well tell them she refuses school then. This is quite enough:

She also has epic meltdowns at home and tells me she struggles to be "at school child" and it males her so tired.

She sort of is refusing school you’re just not hearing her.

Our 7yo dd was refused too first time. The pathway here is a whole load of parent led interventions first, triple p parenting course, we also had six weeks one to one with a mental health practitioner before being 'discharged'. That was following her first really unsettled phase going into reception. We had uniform and seatbelt refusal. The latest phase culminated in school refusal and it seems to be this that has finally triggered the system into seeing her. She has her assessment mid December - two years after her behaviour going off the scale. We ended up applying for an ehcp needs assessment so we could at least get her seen by an educational psychologist and understand more in the meantime. Our dd sounds very much like yours, except her anxiety builds and builds over time and her meltdowns mean we cannot get her to wear clothes, or even out of the house, for days or weeks on end when it reaches its peak. We've had a hard battle as we've been hampered by a clueless school senco, too. "She's fine at school" is her favourite catchphrase. The EP disagreed.

OP have you already requested and EHCP assessment? Part of that would include review by an Ed Psych. Given your descriptions they would be sufficient to warrant an assessment - note this may not include full ADHD or ASD assessments themselves but would provide additional input which a m could be used with CAMHS.

The IPSEA website has template forms for requesting an EHCNA. Apologies - can't link just now.

This is terrible advice.

I work administering the neurodivergent assessment clinic in a very busy large city CAMHS Department. There are extremely stringent thresholds for assessment for ND. Triaging referrals after a referral is done extremely diligently to make sure that children are not placed on the wrong waiting list and spend time waiting for the wrong assessment or therapeutic intervention so it seems in this case your daughter may not meet the threshold. Waiting times are extraordinarily long currently. If you go down the private assessment route please make sure the assessment follows NICE guidelines as if it doesn't there is a very strong chance health or education will not accept the report.

I'd start keeping her off school the day after a meltdown, it would most likely help her mental health anyway and then you'll have the 'evidence' you need she's in crisis. The system in my country is pretty broken but the system in England is completely appealing. You shouldn't have to have money to be able to access an assessment. She's at risk, children shouldn't have to break before they get support. She sounds a lot like my Autistic daughter who's also smart, does really well at school and masks almost constantly when not at home.

You don't need a diagnosis to get help at school or to apply for an EHCP, or DLA.

I have been there and I remember feeling like life was on hold, things could only start improving when we got a diagnosis letter. However then we did, and really nothing changed except it gave me more mental strength to advocate for him. You can assert that mental strength yourself.

In the longer term it's probably helped, but don't wait on a diagnosis letter as if it's some magic key. It's really not. You've got school onside, that is far more important. There's nothing to stop you working with them now, and if she needs more then you apply for an EHCP, same as if she were diagnosed.

I have a daughter with suspected ASD. She has already been diagnosed with auditory processing disorder and dyspraxia. Even pre-covid, CAMHS was slow, and now the wait time for CAMHS is around 2 years in my area. I asked the public health nursing team serving the school to refer her to a specialist hearing centre to get the ball rolling on diagnosis when she was still at junior school. In the end, I funded a private assessment by an occupational therapist for the dyspraxia as the NHS offer to us from a specialist neurodevelopmental centre was poor. My son has some physical health issues, plus suspected ADHD. I just paid £1300 for an assessment and await the results report from a child psychiatrist. The wait times for all psychological, developmental and neurological conditions affecting children is hideous on the NHS. The criteria to go on the wait-list are very strict in many areas due to volume of demand. While there is no arguing with the sizeable costs of private assessment, it is the only way to go in the current health care system if you want something done quickly. I have recently been diagnosed with rare cancer which was misdiagnosed as a benign tumour development on FIVE occasions by GP's and a surgeon who previously removed it. When it grew back and I asked for a consultant to look at it, the GP said it looked like scar tissue from a previous operation (it did not). The NHS consultant tasked with dealing with the referral had his secretary call me to say they could not meet their 14-day referral time, and I would be lucky to be seen in months. If it wasn't for the diligence of the privately funded surgeon who requested more tests, I wouldn't know what it was now. I haven't had my daughter formally tested for asd because she left school at 8. I have home educated her since then, and she is much happier. Like yours, she masks and has all the overwhelm symptoms. I will get her diagnosed before she goes to college. I would advise you to get in touch with ASD charities as they may know of the best strategies and cheapest private assessment available to you in your area.

I believe a lot of areas have had to tighten assessment criteria to either non school attendance, problems in family home or risk to life. Purely due to high levels of people waiting. So it’s not necessarily saying your child doesn’t need assessing - more it doesn’t hit the above criteria. Sadly if your daughter is autistic issues are likely to build until she will meet the criteria. For my son it was the switch to secondary.

I would suggest keeping a diary of everything. Log it all. It will all add up for evidence.

You should still be able to access CAMHS for support with anxiety etc (with a wait).

My son was on the wait list but hit crisis so I somehow found the money to pay. The diagnosis didn’t really offer up much more support as really a lot is based on need rather than diagnosis. So a lot was already in place.

A lot of autistic charities and groups will also offer support without a diagnosis.

Is there a timeframe they give before you can ask again for assessment or is there an appeals process?

There is a lot of support out there with local groups etc and a lot online too. Understanding autism better myself has made the biggest difference to my son rather than anything the diagnosis did - if you see what I mean.

Keep going, you know your daughter best. Good luck.

Pl google infant reflexes not going dormant

I'm shocked at what I'm hearing here
Keeping her home the day after a meltdown,is playing the system.
My child was threatening to kill himself at age 7.,.l . And running round the house hysterical saying he wished he was dead ..,due to school trauma .
The school had to keep him separate at breaks and lunches ,on the days I could get him in that is ..school put him on a reduced timetable of lessons he could cope with and we still couldn't get him in .he was smashing the car up outside school ,clinging to the steering wheel screaming with everyone walking past into school watching ,countless teachers trying to drag him of me...wetting himself at school age 7 ,,soaked through smelling badly because he won't use toilets other than at home ,,hiding food at school , because they checked his lunch box to make sure he was eating, because he could only eat at home ..no coping with the noise and smells and trying to escape to get home
That's how my son got referred to camhs ,,the school did most of the pushing because I was to busy dealing with a traumatized child . .
He got a diagnosis of autism by age 8..
Never was he deliberately kept of school the day after a meltdown,jeaus,I'd of never sent him in ,if I was doing that ,he was having meltdowns every bloody day .
There's a criteria for a fucking reason
.

What agenda? People don't get a cheque for £1m alongside their ADHD diagnosis. There's no prize. Just the chance to understand why they have struggled all their life and the opportunity to receive treatment to help them live a functional life. The opinion that people should have to provide physical proof of a condition to be granted diagnosis and treatment, rather than simply being believed and helped, is ableist nonsense. It discriminates against anyone with a neurological or mental condition. Equally as ableist is your bullshit assertion that more than half the population could soon be diagnosed with ADHD, which is founded in ignorance and aimed purely at dismissing the experience and motives of people seeking a diagnosis.

I’ll preface this with I don’t think the original comment was very helpful, however the GP uncle isn’t wrong.

Lots of people have neurodivergent children. There are also plenty of people who struggle to parent their children and perpetuate intergenerational trauma.

The latter group are the reason everyone gets packed off on parenting courses.

It shouldn’t be so hard for people to get help. However not everyone seeking a ND diagnosis has a ND child…

Go private it will cost around £2.5k, highly likely you'll have had the assessment and report within 6 weeks and you can choose a girls specialist. It will be a much more pleasant experience as your parenting won't be called into question. Yes, more children get diagnosed going private but that's because you wouldn't pay the money unless you were very sure, private and NHS assessments are exactly the same but private may allow more time for it and not rush it giving the child chance to relax more.

Take out a loan, you may have to take out more than you need to get a low rate. For example First Direct used to be 3% if you took out £7000 and you could do it over 7 years but there was no early repayment charge so use what you need, pay back what you don't straight away and then the low repayments for the 7 years or less if you pay is back earlier.

Even if a GP refers CAHMs ultimately make the decision, GPs 'gatekeep' because it would be absolute mayhem it they didn't apply their knowledge and expertise to make decisions. Invariably their thresholds are usually very low as they aren't MH experts, but honestly they make referrals not demands anyway. There is little point to pressure a GP into repeat referrals.

As someone whose daughter did burn out as she masked so well. You can't afford not to.

I'd keep her home and go down the school refusal route. Her education won't suffer. She sounds academically bright and would be perfect at self directed learning. Nothing is worth putting her through all this anguish! You'll probably find a great reduction in meltdowns. Nobody can learn properly when they are in a state of distress.
I kept my DS home for two years, due to anxiety (ASD, ADHD) with schools support. He thrived.
I also home ed my other DCs but that's through choice rather than necessity.

10 years ago, dd2 autism referral was rejected. No one but me saw the signs. It took two years to get a diagnosis and it came after she tried to cut herself with a knife aged six years old.

dd4 was diagnosed very quickly aged 5 after a six month wait six years ago.

dd1 was diagnosed after being completely and utterly failed despite all our attempts to secure help. She was diagnosed aged 15 after a suicide attempt at an inpatient setting. Two years on, I am sitting outside here bedroom door awake to stop her from harming herself.

it is not ok to ignore the warning signs and parental concerns. We are fucking up future generations. My family have certainly been let down.

Assuming the child pathway rules is similar to adults as long as they've not already had an NHS funded ADHD/ASD diagnostic assessment they're still able to request an RTC provider referral. If they had a screening assesment to go onto an nhs waitlist you can still exercise your right to choose a new provider, especially if you were not informed of your option to select a Right To Choose pathway by the GP doing referral which is common.

https://adhduk.co.uk/adhd-diagnosis-pathways-children/

This is the adult RTC support group, they've a sister group for kids RTC but I'm not sure it's taken off as much. I'm sure there are plenty are parents that have been through process with kids that maybe able to help you navigate with the evidence building.

https://www.facebook.com/groups/righttochoosesupport/

My psych said ADHD + ASD can sometimes offset some of the more noticeable traits of each, well externally at least as internally it creates a lot of conflict & anxiety.

That's unfair

Dc are diagnosed under via GP them CAMHS. No difficulty in getting referred and the waiting list/process only took 3 - 4 months in total.

But there has been an absolute explosion in parents and adults requesting referrals and its clearly not just down to greater awareness.

ADHD in particular is seen as fashionable atm. My social media is overwhelmed with Tik Tok type so called experts pontificating about ridiculous made up symptoms. Everybody and their granny claims to have ADHD and its absolute bollocks. It's so offensive to those of us who live with it and see how it ruins lives.

I've fallen out with friends who claim to have it. Educated professionals who have never previously been affected or had their lives impacted who suddenly attribute losing their car keys a couple of times to ADHD. In reality they are menopausal women stretched too thinly with demanding jobs, kids and elderly parents. It's a world away from kids who are non verbal and will never live independently. Its as if they've been brainwashed.

Everyone has some ND traits. It's perfectly normal to have certain aspects of ADHD. But it's when these traits are extreme and lives are severely impacted that you get a diagnosis. It's only right and proper that this threshold is high. That's not gatekeeping. It's applying the diagnostic criteria correctly.

I'm not for one moment suggesting this is the case with the OP. But it's disingenuous to pretend it's not happening.

I have been through this situation. Both of mine are "fine" at school apparently, but have meltdowns at home. CAMHS only interested if the behaviour is consistent in at least two settings.

Is that on the nhs? Waiting lists are 2 years where I live and it often takes the school months to gather evidence in the first place.

Soontobe60 - yep, as someone with ADHD I wholeheartedly agree that it's the neurotypicals that have the problem - I have to take drugs just to get through the day with them. They can only think of one feckin thing at a time and does anyone know why they're so slow? Jeez, the whole world has to operate by a ticking clock or they fall apart and their weird communication where they can only talk about things that are deemed suitably insignificant. I've been in way too many meetings when I've accidently addressed the actual problem costing some consultant a month's fees. I wasn't thanked. 🫤

OP - I sympathise - the above is tongue in cheek (only slightly) your daughter sounds wonderful - much of the world is not and that will be hard for her to navigate - as you'll know. Would Flexi schooling be an option to take the pressure off? I'm furious that the NHS is letting us down so badly - absolutely livid.

This is sound advice. My LEA don't support private assessments.