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To wonder why paeds even bothered with an ADHD Qb test?

36 replies

Eeksteek · 15/07/2022 16:58

DD12 is being assessed for ADHD. She scores highly for it at home, but not at all at school, so paeds referred her for a QB computer test. On which she showed ADHD traits. But as the school senco (with whom I have had no contact and do not believe she has even met) and her teacher (who says she can’t have ADHD because she ‘doesn’t fidget’) say she has no issues at school they have concluded she does not have ADHD symptoms in two settings (which they already knew) and discharged her.

So what was the fucking point of the QB test, if they are going to ignore the results, then? I can understand wanting an objective marker when two subjective scores differ, but why even bother if you are going to just…..discount it?!

Am I being unreasonable to kick up a (polite) stink? Am I ‘that parent’ chasing a label to excuse poor parenting and disagreeing with the professionals? She different, I’m sure of it. She’s so difficult (I never say that in front of her but there’s no other word for it) and I was so hoping to get some support. I wasn’t expecting much, but this is below even my expectations.

OP posts:
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sweetpeaorchestra · 14/05/2024 21:34

Hi OP, thanks for updating your thread a few months ago. I know it’s been a while but wanted to ask how you got the diagnosis with all your data in the end - via the paediatrician?

I really relate to your situation. DD (nearly 8) is now under Early Help as she was sucking her arms in lessons so much she was covered in bruises. This, along with DD writing her teachers multiple letters saying she was stressed and worried/couldn’t understand lessons (all initiated by her not me!) made them realise she’s not “fine” (as they’ve said for years despite us struggling to get her in many times/going to GP when she was 5 etc.)

But they don’t think she’s ADHD. At home, she is just like your DD. Very hyperactive, destroys the house when dysregulated.. I could go on.

Academically I was told she’s “bang in the middle”, now she’s being put in lower groups to lower her stress but they say she’s capable of more.

The SENCO even put me off going the private route which a family member volunteered to pay for after spending a week with us. We have lot of diagnose ADHD and ASD in the wider family.

Shall I try the Qb test (private)? Arrange to see SENCO again and collate more data now she’s under Early help?

I feel I’ve been too willing to accept the brush off but I know my daughter. Her self esteem is low - I want this so she can understand why she has struggles. I know when hormones kick in we could be in real trouble.

Eeksteek · 07/03/2024 17:53

We did get diagnosis, eventually. I made a body of objective evidence from teachers comments and reports and put it in a massive folder, along with other measures. Really anal things like number of night wake ups, hours sleep on and off melatonin, ratios of requests with accedence and refusals etc. It was the world’s daftest data collection exercise, but it worked. Because it was objective, they couldn’t dismiss it without a standard. They couldn’t say her inability to yes to anything ever was not typical, if they couldn’t define a range for typical. But I could say it was 100%. And they had already said that wouldn’t be normal. Because they always start with ‘all children have…..’. And what I was saying was ‘my child overwhelmingly has …. And it is having this measurable impact’

I pointed out, at length, that the criteria is that symptoms are present in two settings, not impacting negatively on those settings. She doesn’t have to be failing or disruptive. I also pointed out that my strategies at home are mitigating impact at school. So I am letting her stay home on says that are hard, school aren’t seeing her hard days. And that the comments her actual contact teachers are about her work, and that she has been referred to various social schemes ACTIVELY contradict the senco she doesn’t know ticking the box that says she ‘never’ rushes her work or has conflict with friends etc etc etc.

She is now diagnosed and medicated. It has made a massive difference. She hasn’t had a school refusal in months. She hasn’t felt sick in forever (her go to, and likely an anxiety response) her teachers have noticed a difference (um, how? If she was so fine before?!!) and most tellingly, she willingly takes her meds independently (I was having to hide her melatonin in her dinner, because she flat out refused it) and if you knew her and her refusal to do anything she should, you’d know that is an ENORMOUS sign that they help her and she recognises that.

She does homework, has made new friends, has much less conflict with friends, cleans her teeth without me involved at all, eats better, sleeps better. There’s nothing that’s not improved, except school performance. It just doesn’t take EVERYTHING I have to get their results for them. Proving conclusively that school didn’t have a fucking clue.

She’s still a challenged child. Home life isn’t easy. But it’s easiER. And that’s all I could hope for. She’s also been referred for an autism assessment. By the same paediatrician who said she couldn’t possibly be autistic because she displayed imaginative play. Apparently he ‘knows her better now’ I resisted the temptation to tell him I told him so, but we now have to wait three years for an assessment. Which is annoying, since I was fairly sure she was autistic when she was referred three years ago. What a good job I’m me and refused to be go away quietly! I was diagnosed myself recently, too. (No surprise!)

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Lhmym · 07/03/2024 08:28

My little lad just had this done they said that they couldn't get a reading of it I'm like yep what you expecting from a child whom is unable to sit still long enough I'm awaiting them to call me for a chat next week as he couldn't handle the assessment thay was doing said he was unable to concentrate focus while interacting with them and then week after she will take all the info to there consultant think this means of you go no dignoses dreading it

Eeksteek · 18/07/2022 18:30

Thank you. Yes, I will if I have to. The opposition behaviour is truly exhausting. Its reflexive - I don’t think she can help it.

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LunaAndHerMoonDragons · 18/07/2022 12:25

She sounds very similar to my Autistic DD. She masks really well, which costs her a lot and me and her siblings are the ones that cop it in the afternoons. I don't think there's any requirement under DSM-5 saying the two qualifying areas need to be problematic in the school setting.

My youngest certainly there's nothing at all his teachers observed beyond an occasional stim. He got an Autism diagnosis based on the 2 diagnostic criteria being met. The requirement is that they have difficulties in both social-communication’, and ‘restricted, repetitive and/or sensory behaviours or interests. My DD diagnosed at 11, is in year 6 and has never had obvious social difficulties at school. It's all much more subtle, her not understanding others meaning, not being able to distinguish emotions, never able to forget a wrong however minor, black and white thinking. Her stim she's had since she was a baby, but I never realised it was a stim till recently.

We don't qualify for any support, but it's been worth it so DD can understand herself more and cut herself some slack. She knows now why she struggles with certain things. She knows why she feels different to the other children. Her words. She knows why she's increasingly confused by social situations.

I'd liquidate or borrow against that asset you spoke of earlier to get your DD assessed privately. You'll need to find someone that is very good at diagnosing children who don't fit the most common interpretation of the diagnostic criteria.

Sirzy · 17/07/2022 16:53

As horrible as it sounds, and only if you can do so safely and without causing distress obviously, I have found filming incidents at home can be a good tool to show to professionals to show what your dealing with and to give them more insight.

Eeksteek · 17/07/2022 16:43

P1nkOw1 · 17/07/2022 14:50

Lots of kids with autism play imaginatively. Autism has so many different traits which can vary in the individual and as to how much.

I despair.

It’s no wonder so many girls end up under diagnosed until the shit really hits the fan when they’re older.

Not this one. Not on my watch!

And which is why I do not have a lot of faith that the same paediatrician can just discharge, after the objective test he ordered showed ADHD traits. It’s only the local cottage hospital too. I’ll obviously have to kick up a stink and get us referred on to someone more specialist. Only I shouldn’t bloody have to. I’ve been at this for three years as it is!

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P1nkOw1 · 17/07/2022 14:50

Lots of kids with autism play imaginatively. Autism has so many different traits which can vary in the individual and as to how much.

I despair.

It’s no wonder so many girls end up under diagnosed until the shit really hits the fan when they’re older.

Eeksteek · 17/07/2022 14:37

Oblomov22 · 17/07/2022 14:21

Don't let the Paed do this. It does happen occasionally. They refuse to diagnose based on conflicting evidence from school. Get GP to write back to Paed saying dd should not been discharged. She needs you be seen again. Insist that just because school say she doesn't show signs, they are there, just missing them.

I had similar with ASD. School insisted there were no signs. I was treated badly, as if I was imagining things. In the end I persuaded Paed to meet my mum who agreed everything I'd said, and he was finally diagnosed.

I think it is very much being treated as my problem, either with my ‘anxiety’ or my parenting. Frankly, I would be a lot more chilled if I wasn’t having such a hard time with DD or had some validation of our struggles! I don’t think I have anxiety. Just a lot of stress (which I manage imperfectly, but given my resources, not too badly!)

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Oblomov22 · 17/07/2022 14:21

Don't let the Paed do this. It does happen occasionally. They refuse to diagnose based on conflicting evidence from school. Get GP to write back to Paed saying dd should not been discharged. She needs you be seen again. Insist that just because school say she doesn't show signs, they are there, just missing them.

I had similar with ASD. School insisted there were no signs. I was treated badly, as if I was imagining things. In the end I persuaded Paed to meet my mum who agreed everything I'd said, and he was finally diagnosed.

Eeksteek · 17/07/2022 14:20

Sirzy · 17/07/2022 11:44

It may not be ADHD there are other things which can cause similar difficulties. Ask peads to look into that and what support there may be.

has she has any professional help and support with regards her Dad? If not it sounds like that needs to be pushed for.

No one’s remotely interested in her dad. It was five years ago, the attitude is we should all be over it. To be fair, these were all issues that were in place since before she could talk, so I don’t think it’s a cause (although it may be exacerbating and obviously, he didn’t die out of the blue, there were lots of issues in the run up)

Ironically, she was observed to be fidgety her peads appointment, and they mentioned anxiety. Cahms can’t even keep up with people in crisis, though, so a child who isn’t even failing at school isn’t going to be seen before she grows up. I did get onto school to do what they could. They gave her a mentor, which consisted of a year 9 to play games with once a fortnight. Fun, but not exactly helpful.

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OnePlusOneEquals · 17/07/2022 14:12

@Eeksteek do you know when the qb test is? My youngest has been under speech therapy and a latterly paediatrician from the age of 2 as he wouldn’t talk. He’s now year 5 and they’ve done an initial dyslexia assessment in school this week and is having a qb test next week. He struggles to concentrate on work in school (especially English) has a working memory problem, but is just below the line of achieving standard on most of his school reports. Sometimes he’s achieving in maths, but generally he’s seen as average. He’s not an overly disruptive child, fairly well behaved in class, but school would not have been concerned about him if I hadn’t raised concerns and had them backed up by another parent who is a speech therapist.

Eeksteek · 17/07/2022 14:08

HeidiWhole · 17/07/2022 11:38

@Eeksteek
There is huge overlap between ADHD and autism - traits in girls can be much more subtle - have you done the AQ for that with her?

Autism was my theory. It’s why I got her referred. It was brushed off by the paediatrician because she occasionally demonstrated imaginative play (although I was very clear that it was rare and highly imitative of whatever she’d been watching on telly) and then they focused primarily on sleep (because that was my main aim at the time. This is much improved, and if that’s all we get from this I’m still calling it a win) I wouldn’t be at all surprised. She has a lot of social difficulties and the PDA traits are telling. But the fidgeting and difficulty with pace and focus are very adhd. We still hit the same problem. School gets the best of her and I get the defiance! Ergo, no diagnosis to validate the issues.

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Eeksteek · 17/07/2022 13:55

Dinodigger · 16/07/2022 05:05

I know you shouldn't have to, but can you afford to go private? Best thing we ever did for our son, he now has an EHCP which pays for him to go to a small independent school and it had been life changing for him.

At the moment, no. I can use some of my husbands ‘pension’ though (it’s in property and not tied into a pension). But given the destruction I have seen this cause, I’m inclined to think it’s worth it.

I know she isn’t failing academically. I know it’s likely she won’t improve much at home, even with meds (although 50 percent of children with PDA type issue apparently do 🤞) I know we won’t get anything very much in the way of help. It is not, objectively, that ‘bad’. I’m already reading all the advice and following all the strategies (perhaps that’s why). But the having the diagnosis there if things do break down will help us get earlier intervention. Knowing why things are hard and understanding how her brain works, even now, might help her feel less isolated and defiant. We can be a team. For me, being able to say ‘this is hard for us because….’ Will help me feel more confident and less vilified for having a child who is so difficult. It will validate our struggles. I can’t tell you how important that feels.

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tunnocksreturns2019 · 17/07/2022 13:40

I sympathise hugely - but even if you eventually get a diagnosis, certainly in our experience help doesn’t follow, and certainly not with anything going on at home.

My DS has inattentive type ADHD, is failing across the board at school despite being very clever, and our home life is regularly nightmarish. I’m widowed and totally on my own with it all. There’s no help outside what family and friends can spare.

I really hope your experience is different - I totally get the exhaustion and send fortitude 💐

Eeksteek · 17/07/2022 13:31

TooManyPJs · 16/07/2022 02:52

I am very surprised she's not showing ANY signs at school? Can she concentrate on her work? Does she daydream? Does she get involved in things other people are doing (rather than her own stuff)? Does she finish tasks? Does she seem emotionally "immature"? Does she have social skills issues? Is she very talkative?

Is it the school filling in the questionnaire and saying she doesn't have any issues or was she assessed in school by someone independent?

She was assessed by her form tutor (who is clearly poorly informed about ADHD) and the senco (whom I don’t think she’s even met, unless she has been pulled out of lessons and I haven’t been informed)

she blasts though tasks to get the end and give ‘the answer’ as fast as possible, often there is some reward for finishing early, like chat or a more desirable task, so she is totally focussed on getting to it as fast as possible. But she’s bright enough for that to be good enough for now.

She can focus intensively for prolonged periods on something she likes, but wild horses won’t make her if she isn’t feeling the enthusiasm. She likes crafts, but only ones she invents. Never anything suggested ‘on the box’. It makes it very hard and frustrating for her. She’s always making up recipes and then is bitterly disappointed when they turn out terribly, because she won’t try with recipes enough to get a feel for them first. It’s heartbreaking for her, but she won’t hear of me helping her.

She LIKES school. She likes the social stuff and the bustle, and the structure is reassuring. The sociability of doing tasks in a group setting, where there is clear leadership, expectations and consequences is enough to get her through the bits she doesn’t like. The comradery of whinging about school with people who genuinely find it hard it (which she doesn’t) is bonding. In my opinion this is managing her difficulties really well school.

There is literally no way for me to reproduce this at home. It will always be just me telling just her what to do. I can’t make us into a group. She can’t have input into basic health and hygiene. She pushes every boundary, no matter how firmly it’s held, she resists every request, no matter how you phrase it. She won’t even try anything I suggest might be fun. (I have to insist. And then of course it’s never fun) unless I can drag another child along too. She’s impossible to keep on task to even to an age appropriate standard, can’t focus enough to listen to a multi-step task, if there’s something she wants, she’s utterly fixated on it until she gets it, and cannot be distracted. Especially sugar. She simply won’t take no for answer (and no very often is the answer. She just argues for hours about it) She wants to move all the time (if she isn’t on a screen. She never, ever gets bored with screens) and cannot connect at all without it. Forget snuggles and telly. She talks, fidgets (not repeated non-productive movements, like foot tapping, but just constantly shifts positions) pauses it to ‘just’ do something else, rewinds bits she feels I wasn’t paying appropriate attention to. It’s unbearable. She needs to move her body all the time. It’s taken me twelve years to drum into her it’s unacceptable to move MY body on her whims (which she now gets, at least most of the time).

sleep was impossible. She was terrified of being alone and could not be still enough to wind down. She needed constant physical contact, and yet continued to flop about like a landed fish while being held, right from birth. I didn’t care that she needed my presence to sleep. I cared that it was like trying to juggle eels and took three hours. She was shattered, and yet I was doing all the ‘right’ things. Until she had melatonin at about 7 and it was a revelation. She has always hated waking up. I more or less dragged her out of bed for school for years. The melatonin helped so much with that too. She still doesn’t sleep through, but that’s ok.

Everything is a battle. Every. Single. Time. True, I’m winning, but the effort involved is immense. I know all children have their moments, but with her, it’s ALL moments. There’s no flow, no ease. Her pace never matches what’s normal. It’s all an unrelenting uphill struggle. I was so hoping for some support or actual help. (It’s not like being a lone parent isn’t a tough gig already!). My life is entirely me having to force her to do something she doesn’t want to do, or her trying to force me to do something I don’t want to do. It’s sad really.

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Sirzy · 17/07/2022 11:44

It may not be ADHD there are other things which can cause similar difficulties. Ask peads to look into that and what support there may be.

has she has any professional help and support with regards her Dad? If not it sounds like that needs to be pushed for.

Eeksteek · 17/07/2022 11:39

Sirzy · 17/07/2022 11:29

How indicative was the QB test? Generally it’s used as a tool as part of the overall picture.

She was specifically referred on for the qB as we did not have evidence in two settings. We now have a qB indicative of ADHD (which is all in know atm) and still don’t have evidence from two settings. I suspect school have told them I am one of ‘those’ anxious parents because her father died of alcohol abuse following mental health issues and I am adamant this is takes priority over education. She can learn shit later if her mental health survives puberty. It’s a lot harder to recover from a mental health crisis, no matter how much algebra you know.

I suspect school just see her as bright and no trouble. They’ll learn, of course, but I’d really rather she didn’t self destruct in the meantime.

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HeidiWhole · 17/07/2022 11:38

@Eeksteek
There is huge overlap between ADHD and autism - traits in girls can be much more subtle - have you done the AQ for that with her?

Eeksteek · 17/07/2022 11:31

HairyKitty · 15/07/2022 17:20

ADHD doesn’t require fidgetyness for a diagnosis.
Nice does require 2 settings (otherwise it’s blame the parenting) but surely a home setting and other social or club settings plus the QB would be sufficient?
If you are seeking medication then no I wouldn’t let it drop.

She won’t stick at a club long enough. Gives up everything, usually after one session but always after a few weeks. My mother (who is super strict and thought this was all my soft-modern-parenting) is the only person who has spent enough time with her to see what she’s truly like and even she concedes that’s she’s different (and she bought me up!)

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HeidiWhole · 17/07/2022 11:29

Interesting as my DC was diagnosed (autism) without the two settings evidence as they are home-educated. We did have an extremely long interview though alongside assessment from SALT & psychiatrist plus the ADOS.

Sirzy · 17/07/2022 11:29

How indicative was the QB test? Generally it’s used as a tool as part of the overall picture.

Eeksteek · 17/07/2022 11:24

QueenCamilla · 16/07/2022 02:19

My "fidgeting" was (and still is if I'm not on meds) scalp picking. No one would have known as I hide it.

I did exceedingly well academically at school as a child. But I had many other symptoms - chatting non-stop, 10 hobbies a minute and promptly abandoning them all, risky "adventures", unable to switch off at night, unable to get up and get started in the mornings.

School performance started falling apart with teenage years. The 10 hobbies turned to 10 jobs a minute, dropped out of uni, dropped out of every single course thereafter...
I got diagnosed at 36.
At 12 it just wouldn't have happened. Unfortunately. I think women on average get diagnosed in their 30's!

Except for the scalp picking (although we have lip biting, skin and nail picking. She also has sort of throat clearing/mini cough every ten seconds or so that it has just occurred to me is a likely a ‘fidget’) This is HER EXACTLY. And none of these things would show at school. She’s bright enough to do well without much effort, so her lack of application isn’t showing (homework is slapdash and done over breakfast, if at all, spelling usually missed etc. She’s year 7. Homework is only token at the moment) and charismatic enough to mask her differences and lead her friends in play. She does not, however have good friends. She seems ok at school, but two friends locally are not allowed to come to our house and play with her. (I don’t know why). In a whole year, she has not made friends with people out of our area enough to see them outside of school, even though I have offered to drive her over to other villages for casual park meet ups or whatever. I have worked very hard with her on what is socially acceptable behaviour. Superficially, she’s great. It’s only when you spend time with her you discover she can’t really attend to others enough to be pleasant company in groups. I haven’t finished a sentence for years! You’ll be chatting away, and she’ll just jump in, mid sentence with ‘I’m going to make my bed now’ and leave.

She went to a fabulous, tiny primary where I know they miss girls with ADHD. I know of two socially, who were fine in primary and then practically self destructed with alcohol, promiscuity and mental health crises at 13. Both girls had an awful time with themselves and their parents being soundly blamed (and, in the case of the children, punished) until they ended up in mental health crisis. One had to be talked to be talked down off a bridge over a motorway and sectioned. The other had an abortion and completely withdrew from society. Both girls have had their young lives utterly ruined, and have made astounding (partial) recoveries following diagnosis and treatment. Neither is likely to achieve anything like their potential. Likely both could have been supported better and had the impact in their lives minimised if they were diagnosed pre-puberty. Both sets of parents say they knew she was different and all the signs were there, but school had no concerns. Her father also had huge mental health crises, and abused alcohol so badly that he died of liver failure aged 43.

I do not want this for my child.

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RannisLord · 16/07/2022 17:32

I feel your frustration and we are in a similar position but still waiting the QB test to apparently “give a definitive answer one way or the other”.

We were given a no for ADHD purely on the basis the evidence was apparently not there at school. School said no issues. Long story short I requested a second opinion as I argued that 1) He does have difficulties at school and 2) Even if he wasn’t struggling at school there is plenty of evidence from more than one setting and the diagnostic criteria doesn’t specify one setting must school, it just needs to be multiple settings.

It was reluctantly agreed we could have another assessment. In the meantime he was assessed for ASD and given a diagnosis but it was said in the report that he displayed high levels of inattentiveness and impulsive behaviour that is not explained by ASD.

I felt for sure we would get an ADHD diagnosis based on that. But no, they came back and said the evidence simply isn’t there at school. It was then agreed a QB will give an answer. We are still waiting (over a year now).

It makes me really angry because then I get his school report and it’s basically all ‘easily distracted’, ‘chats too much’, ‘needs to learn to concentrate’. Yet he has NO issues at school?! Just wanna hang my head against a wall.

FlemCandango · 16/07/2022 05:41

My DD has ADHD, she was diagnosed aged 12 and is now 16 and has medication and has an EHCP. She also has Autism and dyspraxia. The issues at school were more obvious, she struggled to concentrate and focus and it was DD who drove the diagnosis, she asked her paediatrician about it. She has been seeing them since she was 8 when she was diagnosed with autism. We completed questionnaires which were pretty much 100% yes she has ADHD and they basically said if the medication (ritalin) helps then she has ADHD. She relies on meds when she needs to get work done. So takes it daily at school. Though school is over for now as she just finished GCSEs.

DD is very well behaved, but she is easily upset if she is struggling at school or home, she will cry/ meltdown, she skips up and down the room, she fidgets, she cannot manage a list of instructions, she is emotionally unstable, she has no sense of object permanence... There are a lot of things she struggles with.