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
...

can you pay for a private assessment?

Go via the gp?

We can't afford it, unfortunately. Worha ll the research we've done, pretty dure her dad is ASD and I'm ADHD x

I don’t know what to say to help but she sounds EXACTLY like my dd and we are just putting together an assessment case now I.E. filling in a load of forms the school have given us. She doesn’t present at school at all but the senco believed me luckily. Was it the school that rejected the assessment or was the actual CAHMS referral rejected? As I’d heard that the latter is quite likely to happen which makes me nervous

Sorry I wasn't clear, I'm rage typing! The school were begind me, its CAHMS who are denying an assessment.
Hope your daughter doesn't slip through the cracks! X

You could start keeping her home from school the day after she has really bad meltdowns? You said her mental health is plummeting, so she can’t be expected to keep going to school everyday faking being ok. Any adult in her situation would be signed off work. You as the parent, need to do that for her, sign her off school for a day a week. That then increases the chances she’d get an urgent referral for assessment.

Can you find out why they rejected it or the local referral criteria?
I’m a GP and DS 10 is autistic- diagnosed earlier this year. Our local referral criteria is so strict and so much hoop jumping but if you don’t go through it the referral is rejected outright. Children have to demonstrate difficulties in the 4 main areas ASD people can struggle with, school have to demonstrate what they have done to support the child and this has to have been tried for 2 terms and then failed before the referral will be considered.
As a GP I’m not involved in referrals anymore because all the information they want is from schools and parents.
In many areas the assessment process is broken and as a country we are failing children like your daughter. Fortunately we were able to afford a private assessment for our son.

This is so frustrating for you OP. They go on about early support, yet here is a little girl with all the warning signs of breaking and they wont assess her.

I actually agree with pp to some extent. A meltdown has a few stages. So a build up, the meltdown and then a recovery stage. Its meant to use the energy if running a marathon. We found, after much trial and error, that my son actually need a good 24-48 hours to recover from a meltdown. So when he was having them daily, he was never recovering. Just a permant state of high stress. I wish id let him rest at home more.

I would also say support is supposed to be needs led not diagnosis led, so if there are things you think school could do to help her, dont be afraid to ask. Not everything costs money.

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.

Ask GP for a right to choose referral to Clinical Partners. My daughter was referred to them on 20th of October for ASD and had the assessment on 20th of November. We will get the report/diagnosis before Christmas.

"A lot try to use the fact that they display some of the signs to get a diagnosis"

Can you ever imagine that being said about a physical condition?

I display some signs of cancer. I'd like to be tested.

No sorry, signs are not worthy of a test.

Errrr. So what is?!?!?!

And not coping with life. Same.

I am in pain. So Im not coping with life. Can you find out why?

No, sorry. The fact that you're not coping means nothing. It's not worthy of investigation.

Unacceptable.

Just because there's been a raise in awareness re neurodivergence doesn't mean people are faking it/ the NHS can fob people off with an eye roll.

It means doctors like your uncle need to move with the times and the NHS needs to adapt. Bloody dinosaurs.

Unfortunately, if a referral has been made to CAMHs already, the Right to Choose referral process cannot be used. The OPs dc has already had a referral, been triaged and an assessment has been declined. Presumably because she doesn’t meet the criteria for assessment.

Are you in the south west? Lots of areas have tightened criteria recently as waiting lists are so long - it's not enough to be probably autistic to get a referral.
The child has to be probably autistic AND at crisis point, unable to go to school, home life breaking down etc.

The other thing to think about, is what are you hoping the diagnosis will achieve?
If she is displaying lots of autistic traits then you and the school can treat her as autistic now. The diagnosis doesn't bring any additional support.

If you can't afford a full diagnosis privately, you could see a child psychologist privately for an initial assessment. That might cost around £250.
They can carry out some initial screening, meet with your DD and advise you about whether she would meet the criteria for a diagnostic assessment and give you/school suggestions on how to support her now.

Its probably just as CAHMs have upped their thresholds for referrals. Here the wait is literally years for assessments and the issue is that children who genuinely cannot cope and need quick intervention were getting lost in the wait lists. Its not right, but unless the gov addresses the issues in the NHS the thresholds are unlikely to be lowered now, even though many who are denied access do need it and previously would have met the criteria. Unless you can afford private sorry to say that you'll struggle. I'd complain though, CAHMs staff will be thankful for patients families complaining as the gov doesn't listen to them as staff and they've been shouting about shortages for years.

How did you contact CAHMS?

Did you or school ask for an assessment?

I've always gone through the gp.

Dd is in year 7. I spoke to my gp when she was in y5 to see if they could refer her for an assessment. That was 2 years ago and we are still waiting . Dd1 was only on the list 6 months but they was 10 years ago.

I had to wait 2 years for my assessment.

Sadly I’d say start saving. I went privately when my dc was 12.

I didn't realise schools did this at all. Our secondary school just said go to GP - they don't do anything until child distracts others. Not sure how far I'll get but have the forms to fill in from the gp.

@Mumofthebrood - do you or her father have private healthcare insurance from your employer? I've heard of people getting assessments that way, which might solve your problem...just get her added to it, wait a couple of months and get in touch with them.

If someone turns up at the GP with, say, migraines, the GP wouldnt automatically send them for tests for a brain tumour. They would look at the symptoms, suggest treatments, reassess if those treatments haven’t worked, repeat.
Let’s be perfectly honest here, the ‘tests’ for certain conditions rely purely on completing a set of tick lists. There are no blood tests, no x rays, no MRIs that can be used to confirm a diagnosis of ASD or ADHD, or a myriad of other neurodivergencies . There are no ‘cures’. Which leaves these conditions wide open to abuse by people who have an agenda. The people who fall into this category are doing a massive disservice to those who are significantly impacted by these conditions and yet have to wait years for diagnosis because of the explosion of requests for assessment. Potentially we could soon reach a situation whereby over 50% of the population are diagnosed with a neurodivergence. At which point, one could argue that statistically, it’s those who are NOT diagnosed who become the neurodivergent population.

She says she can’t be an “at school” child- so let her not be at school. Let her reset after her meltdowns and tell her that she can let you know when she feels able to be an at school child and only send her then. It sounds like she could fairly easily manage school work at home if you say to the school to have work available for her for the days she cannot come in… and then let CAHMs know that she is now unable to attend school full time due to the impact on her MH…

Right to choose through gp.
I tried to go through cahms and they only offered counselling also said he can't be adhd if he can mask all day at school, not true. I quickly realised they would be useless for us. so right to choose is the way forward, have a research into where you'd like them to be assessed.

I'm in the US but I just wanted to offer my solidarity. Females have always been passed over, all of the research in ASD has been done solely on boys, so girls are not recognized medically or practically. That's why so many females of all ages slip through the cracks. My DD is 13 and we finally got a doctor to help her so she's finally hopefully getting tested for what I already know is going on, after years of fighting the system. I think we might finally be getting it done through state insurance but that remains to be seen. It's really difficult and expensive here too. I also had to homeschool her after her school refused accommodations and were effectively abusing/neglecting her. Many times parents have sue schools in court to get their needs met, even though it's already law. My head was about to explode at that point and I knew I couldn't mentally handle a long drawn out lawsuit as they always are. I can't help with your issues with the system across the pond, but mother to mother, try to take each step with mindfulness and lots of self-care, and try not to let the b.s. get to you. It sounds like you have some fighting to do for your DD and you deserve to keep your mental health and emotions well and intact. Look at the long haul- somehow your DD will get everything she needs, keep your eyes on that. Good luck with it and I hope someone can guide you the right way! 💜

Can you look into right to choose? The referral doesn’t go through Cahms as far as I know.

we picked a provider & got a referral from the gp. It’s still paid for via the nhs so not private. We googled to find a provider (wouldn’t go through evolve psychology -they’re coming off the acceptable providers here). the wait for Cahms has already been 3 years here & they reckon it’ll be another 2 at least 😢

have a google & a chat with your gp

Our school will send in referrals to CAMHs on parent’s requests. I have to complete a quite extensive form where I list all the concerns the parent has about their child in the home, regardless as to whether we see those issues in school. I’m well aware that children can present differently in different setting, and some parents don’t want an assessment because they don’t see the difficulties their child may have in school within the home.
The reason why I’m happy to refer is because I’m not qualified to determine whether a child has ADHD, ASD etc. I’d say at the moment approx 50% are refused assessment whilst of the remaining 50% a handful might get a phone triage leading to a place on the waiting list and the rest seem to be held in limbo. It’s a broken system.

You’re not in greater Manchester by any chance are you?