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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To the pp suggesting a loan - and also to the OP, what difference will a diagnosis make? Sure it's validation, but practically I'm not sure. For ADHD there's medication, but where it's autism & ADHD, I understand the medication often isn't as effective. For autism - I'm not sure anything is offered. My daughter is waiting for an assessment, I'm not expecting anything beyond a letter of diagnosis. As someone else suggested, all you can do is make lifestyle accomodations as far as you're able. My daughter hated school but does exceptionally well at home. Not for everyone I know.

Actually for ADHD you've got tests like the qb test and Tova test which show your hyperactivity, inattentiveness and impulsivity against a average cohort of your age/gender.

No they're not perfect, but in conjunction with evidence based information they're pretty conclusive.

In your position I would go private for diagnosis. It’s really expensive but my experience is that despite most help being meant to be needs-based that a diagnosis is massively helpful in accessing most support.

One good piece of evidence which you can get is an educational psychologist assessment. School can organise these independently- doesn’t have to be through camhs - and school pay. The educational psychologist advice should offer in-school recommendations to make her feel more comfortable which will hopefully have a knock-on effect in reducing meltdowns at home.

If you haven’t already done so then apply for disability living allowance. There is good advice online about how to phrase things on the form. Save the money each month until you have enough for diagnosis.

With the school refusal thing, I would just email school the day after each meltdown to say “x had a huge meltdown last night and is very tired today. She initially refused to attend school but I have managed to force her in. “ then take her as normal. Once you’ve done about 20 like that, ask them to add school refusal to her send profile. I wouldn’t stop taking her if she wants to go - the chance of it triggering an actual school refusal is too high.

Once you’ve got school refusal on the send register and you’ve got the educational psychologist report then apply for an ehcp to give her more support in school.

You can go to gp and request a referral to a paediatrician . Who could then do a referral . Or write a report to back referral up.

What support do you feel your child needs? Do they need a Sen plan in place at school? Would they benefit from a ehcp? Those things can be put in place without a diagnosis.

Nothing really changes at home after diagnosis, there's not really any support. Support is mostly in school where needed - additional funding/Ed psych/salt/ot etc. in terms of at home it's mainly down to parents to do their own research and adapt their parenting appropriately.

Soontobe60
You really are talking inflammatory, ableist scaremongery rubbish. How are we near 50%? ND rates are 15% and it is incredibly hard to get an assessment and diagnosis let alone get through both and end up diagnosed..

There is zero benefit in getting a diagnosis other than ND people understanding why they struggle so much , learning more about themselves and being better able to navigate the world due to having their needs better understood. So not getting your your theory that hoards are queuing up to abuse the condition.

Pugdays

And unfortunately the criteria is biased towards boys so girls repeatedly fly under the radar.

My dd was masking at 9 and the school were utterly shite with only boys getting picked up and supported. Fast forward to 15 and she was self harming, anorexic and struggling with suicidal idealisation. CAMHS pretty much diagnosed her on the spot with both ASC and ADHD. She has been in and out of hospital since and tried to take her own life several times.

Just because your son was lucky enough to get his diagnosis when he should have done it doesn’t mean girls who present differently should just be left until crisis. I can’t believe this is still going on. It’s outrageous.

I'm furious that the NHS is letting us down so badly - absolutely livid.

Yes the government is. They keep trying to throw more money at Trusts to expand CAHMs provision but there isn't enough staff and the government have repeatedly ignored concerns for well over a decade (and no, it's not all about money). I'm dual qualified and wouldn't go back to working in CAHMs for £100k a year plus- it's hellish.

cauldwell centre do private assessments that are subsidised if household income below £45k

https://www.caudwellchildren.com/services-autism/

They recently changed the criteria in my locality for ADHD and ASD assessments and many families were receiving the same response as you when referrals went in. However there was such a massive uproar (quite rightly) that the criteria were changed back fairly quickly. Really hope the same is true for where you live. The situation is dire.

She sounds just like my 9 year old daughter but we were lucky that she's got accepted for an asd assessment 2 years ago that actually starts next week!
I'm just hoping that she shows her true colours and doesn't totally mask during the assessment 🤞

Tell me you don't know about the ASD assessment process without telling me you don't know about the ASD assessment process.

I have 3 DDs with ASD. 2 are diagnosed, one still languishing on the waiting list and now out of school despite being highly academic.

The process in my area:

1. Lengthy referral form - reviewed by clinicians to see if they want to progress assessment. If no, letter to parents. If yes, stage 2.
2. Questionnaires to home and school - reviewed by clinicians to see if they think ASD likely. If no, letter to parents. If yes, stage 3.
3. Wait for about a year. Further questionnaires to home and school.
4. ADOS - a set of assessment activities and interview which is administered by (in my area) a psychologist and a highly specialist Speech and Language Therapist. One interacts with the child and the other observes the language used, body language, tone, intonation, reactions, etc.
5. (In my area) 3Di developmental interview with parents. Milestones, behaviours, social relationships, school history, sensory sensitivities... Takes about 2 hours. Questions are asked positively (yes scores high) and negatively (no scores high) and are mixed throughout the interview, then a computer programme analyses the answers to give scores. There are maximum scores and threshold scores.

Only if the child has a 'positive' ADOS and a 'positive' score in the majority of domains of the ADOS, do they get a diagnosis of ASD.

DD2 masked incredibly well. Yet her 3Di scores were extremely high, and her ADOS was strongly positive.

He had a flight/fight response. A lot of girls have a flop/freeze/fawn response to stress.

Our two referrals to CAHMS were also refused for similar reasons, my understanding is that unless the child is being disruptive or at risk of being excluded then they’ll usually decline.

I couldn’t deal with the bureaucracy of trying to go via the NHS and my GP isn’t particularly helpful either. Dd is still waiting for an initial paediatric appointment and that’s a 12 month wait. We went private in the end.

If financing the assessment is an issue, one way to do it, is apply for DLA then use the DLA back payment to cover the cost of diagnosis.

Sorry that your DD is struggling and that CAMHS turned her down

As a PP said, Right to Choose might not be an option, but it is worth contacting your local ICB to ask their criteria for funding assessments under RTC. My local ICB criteria includes this:
It must be for an initial referral for the assessment i.e. if the child has been referred for the Neurodevelopmental Pathway by school and the child either did not meet threshold for assessment, or they met threshold and are on a waiting list for a neurodevelopmental assessment by CCS or CPFT, or has had a previous assessment that did not provide a diagnosis then this would not qualify as an initial referral.

So if your ICB has the same/similar criteria, it seems unlikely that you could go through RTC, sadly. If it were me, though, I would still double check.

Have you contacted SENDIASS? If not I suggest you do because they can offer advice and support.

You could also ask school about an educational psychologist assessment and/or an EHCNA.

Lastly some of the RTC providers do a free initial screening so it would be worth doing that to add to your evidence.

If you can't get an assessment funded through RTC (because of being refused by CAMHS) you will need to build more evidence and keep trying CAMHS.

A diagnosis makes a huge difference. My Dc got a diagnosis of ASD about five years ago. We waited a couple of years for it and I suspect if today's criteria were applied we wouldn't have been eligible. We got no further support but knowing that this is why they are the way they are has helped us all in many ways. Without it I think we'd be a very fractured family by now.

My DD already has ASD diagnosis is at 50% school attendance and unlikely to go back to mainstream school and camhs have just refused our GPs request for adhd assessment and Mental health support. They just don’t help unless your at the already attempted suicide once stage in the SW. it’s shit quite frankly. Try the right to choose route but if it’s adhd they still won’t do medication after the diagnosis that’s another long list!

If your daughter is managing school then I wouldn’t teach her to stay home as a coping mechanism for her stress levels. Perhaps find other ways of coping with the post school exhaustion?

I’m not sure what a diagnosis will achieve at this point. All accommodations can be accessed on a “needs” basis as can benefits if that’s appropriate. It’s important to be really clear in your mind what outcomes you are looking for.

@Challengemonica I was the PP who suggested a loan, I didn't get one myself but noticed quirks in Primary and started saving with a Help2Save account as I was on a low income, it matured just in time as as soon as DD started Secondary those quirks started to be become problematic and she massively struggled with the school environment. She was diagnosed within 6 weeks rather than the 4 years NHS waiting list in our area - where she wouldn't have hit the bar anyway as she displays no challenging behaviour ever.

For the price of the two of us to go to Tenerife for a couple of weeks I was able to save her spiralling MH, she thought she was losing her mind. Whilst the diagnosis didn't bring any physical support or instant access to therapies that validation is absolutely priceless, and no, like many autistic children she doesn't have a EHCP or get financial assistance as she doesn't need it but that doesn't matter, she gets support in school and when she developed stress induced motor tics it wasn't so shocking

I've not read all the responses so apologies if repeating stuff already said but I'm short on time. This has two components...

1. A diagnosis
2. The support she requires

1 does not magically make 2 happen.
2 does not require 1

You say school are behind you on this - this is good and valuable. Are they gathering their own evidence? Is she on the radar of the SENCO? Have they put any reasonable adjustments in place? Do they think there's enough to warrant an EHCP?
If not, I would see if you can financially stretch to a private Ed Paych assessment and see if they can observe her both in school and at home. You'd be looking in the region of £1000-2000 depending on where you are for this. They will speak to you, speak to school, observe, do some standardised assessments with her, and produce a thorough report (the most recent for my son is 15 pages long vs 2 pages from the local authority EP.)

From here, depending on the outcome you can go down the route of requesting an EHCNA.

She may also be eligible for DLA, worth a look - again, needs based, not dependent on a diagnosis.

Absolutely dreadful she's been refused an assessment seen as she is struggling and it's important to understand why.

I would just assume she is autistic / ADHD and start implementing strategies such as visual timetables (if no PDA likely), lots of downtime, sensory work etc.

On another note, and I do mean this gently, what do you mean by 'high needs'? I absolutely know it's not a competition about who has it hardest etc, but we aren't able (for good reason) to use functioning labels anymore, or severity labels and 'complex needs' has been co-opted a bit. 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. Maybe I am wrong there though.

In any event, the state of NHS ASD/ADHD assessment waiting times and thresholds, is there any way you can save for private? Is the school at least working on a need basis and taking your concerns seriously?

Getting a diagnosis is so so important. Because then you a framework in which to describe the challenges the autistic person is facing.

DD was quickly labelled as a naughty kid in YR/Y1 because the school refused to acknowledge that there was SEN. Sticker charts aren’t going to work when a child is having a meltdown at school. Nor is using physical restraint. Thankfully we’re no longer at that school but by her new school treating her as though she was ASD even without a formal diagnosis, meant her needs were met, she wasn’t melting down regularly at school and therefore she was able to engage in her learning.

I agree with Lougle. It’s such a complex process that takes many hours and many weeks in collaboration with the school SENCO. And a team of clinical psychs/SALT with many years experience, that the idea that anyone is able to fraudulently obtain an autism diagnosis is frankly absurd!

There are zero benefits of living with a disability, every fucking day is an uphill battle, it’s incredibly exhausting advocating for DD’s everywhere they go.

JustSettleOnAUsername

Yes you are wrong. My dd can leave the house,can talk and is not in nappies. She has high needs as illustrated by her full PIP.

To the commenter who asked about Greater Manchester, we are Cheshire East.
Initial form submission to initial waiting list assessment - 8 weeks.
Assessment - 13 months

My daughter is a similar age, very minimal but subtle signs like prolonged eye contact (which the teachers said suggested masking) and an insanely high intellect and perfectionist traits as such causing some social issues with school outside the classroom in free play (she thinks they are, in the main, all idiots).She made it through the initial form assessment. Waiting on final assessment.

No sensory issues around clothes (just strong opinions), no meltdowns and no hyperfixations.

I'm amazed with what you have described you haven't fit in the "pass initial stage" column.

If they are done following the nhs methodology by appropriately qualified assessors then they have no choice but to accept them.

When we got the gate keeping letter I asked for a contact address (email) for the camhs department.

Then I emailed and explained everything and the effect on his MH. End it by asking if they really are saying u til she has an actual breakdown they won't help? Have a look at nice guidelines and point out what their duty is against those.