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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The diagnosis can make it a lot easier to get an EHCP which, properly done, brings significant support over and above what a school can supply from its own resources, and is also helpful in establishing the need for reasonable adjustments.

https://www.parkinsons.org.uk/news/adhd-drug-shows-promise-improving-cognition-parkinsons

This is regarding incorrect information posted by some earlier in this thread.

It's also currently being researched and it looks like there is a link between ADHD and Parkinson's disease in a sense both relate to understimulation of the brain and people with ADHD are more at risk of Parkinson's not because of medication but because they have ADHD. Obviously not all people with ADHD diagnosis take medication.

I nearly killed myself in my early 30s because I was so lonely and I had screwed up (so I felt) a run of jobs by not fitting in socially, saying the wrong thing, being so mentally broken by "peopling" all day that I couldn't speak by the end of the day. I described myself on more than one occasion as "social cancer" and that I felt I rotted and destroyed everything I touched.

It wasn't a MH issue - it was the fact I was autistic and didn't fucking know.

I am now in a really good place mentally - the difference - I know how my brain works, I know how to work around my brain and use the strengths it has and support the areas that are weaker, and I have an amazing group of colleagues I love - but it was only because I learnt all that about me that I got into that place.

While I think it's a shame that this thread has been a bit derailed from offering the OP support and advice, I think we need to recognise it's not Tictok that has diagnosed us as adults. For most of us, it's the soul destroying experience of watching our children struggle and crumble in a society that is not accepting and supporting of neurodiversities and then realised that this mirrors our own childhoods.

Exactly. Social media (in my case, YouTube) only starts the thought process by letting us see other ND people unmasked, which we would - under normal circumstances - never, ever see in order to be able to compare against our own experience when nobody else is around. That hasn't been possible in the entirety of human history until the last 10 years or so, and it's led to an awful lot of positive changes in the medical profession's understanding of ND conditions. There is a lot of value in that.

That's why there's such an explosion of late-diagnosed folk, and why so many NTs seem keen to blame it all on self-labelling and TikTok/etc. There's just a fundamental lack of understanding of what the process actually looks like (despite there being so many explanatory videos out there - far easier to just blame the latest devil-site and jump to hasty conclusions).

If you read the latest studies you'll see that they suggest that medication may significantly increase the risk.

New research shows that patients with ADHD have an increased risk of developing Parkinson disease (PD) and related basal ganglia and cerebellum (BGC) diseases, and patients treated with stimulants have an even greater risk.

Researchers from the University of Utah explain that patients with attention-deficit/hyperactivity disorder (ADHD) were more than twice as likely to develop early-onset Parkinson disease or a related basal ganglia and cerebellum disease than peers who do not have ADHD. Among patients with more severe disease who are prescribed stimulant medications to control their ADHD, the risk was 6- to 8-fold higher.

https://www.ajmc.com/view/new-research-finds-link-between-adhd-and-parkinson-disease

They also state that it could be that people on meds have more severe ADHD, and that this is the cause of the increased risk. However, we do know that the group that take meds have a much higher chance of developing Parkinsons for whatever reason.

I'm glad you've corrected yourself there, let's not quote selectively here, this is the final paragraph:

^“The jury is still out,” said Karen Curtin, PhD, associate professor of internal medicine at the University of Utah, and one of the authors of the paper, in a statement. “The increased risk we observed in people could be linked to having ADHD itself or perhaps a more severe form of ADHD, which may be more likely to be treated with medications.”

Hanson did encourage patients to discontinue treatment for ADHD, saying, “I believe the treatment is still a benefit, especially for children who cannot control their ADHD symptoms,” Hanson said. “Medication really should be considered on a case-by-case basis.”^

https://academic.oup.com/fampra/advance-article-abstract/doi/10.1093/fampra/cmac153/6967171

Oxford 2023 study concluding use of illicit stimulants is associated with increases risk of Parkinson's Disease in ADHD patients, whereas the same link has not been identified in relation to prescribed stimulants.

I realised I had ADHD when I watched my preteen struggle hideously with high school before being diagnosed & medicated. I now see why I spent most of my life not really feeling like normal people and not understanding why. Struggled with emotional attachments / addictions / executive function although vv bright.

While I’m not downplaying your struggles I think it’s a bit of an assumption when people say ‘what normal people feel like’. I don’t know a single NT person who doesn’t have struggles in one area of life or another. There does seem to be a generalisation that NT people glide through their lives feeling cool, collected and in control which in my experience is far from the case. It’s just their struggles either aren’t in the areas that diagnose ND or they’re not extreme enough to meet the threshold. To be honest everyone is an individual and I don’t think there is a ‘normal’ way to feel as such.

Just a little update, and I'll read more and update more soon.
Fiona, you can kindly fuck off.
Everyone else, the school have been amazing, they went right back in and told of DDs newer struggles and they are starting to see it at school now, like crying when she got an answer wrong (that the teacher realised she'd written the question wrong) so pleased to report DD is now on the waiting list for assessment, and I've been signposted to an amazing ND hub, who are so welcoming. And we also have accessed 1-2-1 counselling sessions which should start in a few months.
I cannot thank everyone enough for their support and encouragement. I am so grateful to you all, well... most of you!

The below sentence doesn't really make sense.

Hanson did encourage patients to discontinue treatment for ADHD, saying, “I believe the treatment is still a benefit, especially for children who cannot control their ADHD symptoms,”

Sounds more like he did not encourage patients to discontinue treatment.

It sounds like it may not have been a like for like comparison. The fact that people who abuse stimulants do it in much higher quantities means you can't just compare results for 'illicit stimulant users' vs 'prescribed stimulant users'.

Cociane users ingest by the gram. ADHD patients ingest by the mg.

How much is a private assessment? x

Mine was £800, but that was a) an adults-only service directly with an accredited assessor (not a big company), and b) before the cost-of-living crisis hit.

Prices mostly seem to be in the £1500+ range, and £2000+ for children, but they're sometimes covered by private health insurance. Mine was only cheap because the assessor in question happens to believe that, in a world where it's essentially impossible to get a diagnosis on the NHS within a reasonable timeframe, such things shouldn't be completely out of reach.

@Jules46x £2300 for DD I'd saved up for 4 years using a Help 2 Save account which the govt puts in a sizeable bonus, she had been quirky as a young child although her traits didn't become problematic until secondary. 6 weeks from making contact with the clinic to having the report in my hand. Compared to 4+ years on the NHS just to get to the assessment stage. Her assessment included 1.5 hr zoom call for Developmental history, various questionnaires for myself and school, best part of the day at the clinic where they did the ADOS test and then the WISC V (which I don't think NHS do) which tests a child's intellectual abilities across 5 areas and their strengths and weaknesses. For DD the WISC V bit and learning how her brain works was the most useful along with the validation that she wasn't losing her marbles and was just autistic. Following on from the diagnosis don't expect loads of support to open up because it doesn't, DD is lucky and goes to a fab mainstream secondary that bend over backwards to help others are not the same.

It's depressing that attitudes like yours still exist.

You will struggle to get your GP to get you accepted to CAHMS for an assessment .Their thresholds are notoriously high and they like a lot of evidence ,and as awful as it sounds parent's will not be listened too .I have not read the entire thread so i apologise if I am repeating but it needs to be school , they need to document everything and that is incredibly difficult when girls who are notorious for masking and school say well we see no signs .I have two high functioning DD's teenagers .The one masks so well is extremely clever and school would say she is fine , she does cope with school as she has amazing friends but she is 100% autistic she knows herself .Our other DD could not cope with secondary , 2 requests by GP for ASD assessment refused , her then specialist smaller school did one accepted straight away and now we are on the waiting list .Your best bet is to keep asking school they need to help her and if they do the request it will be accepted , or ask them to get an educational phycologist in .Her mental health comes first , education can be caught up .

We established that @ oakleaffy’s post was utterly ridiculous.

She needs the appropriate school support which can only come with an EHCP.

You need evidence to be successful and this can come from diagnostic reports, your GP, SENCO etc.

If you don't yet have a dx of ASD or ADHD you can ask your GP to refer you through the Right to Choose. There are lots of private companies offering ADOS or QB tests that you don't have to pay for.

HTH