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MrsMonkey and I suspect that eldest MiniMonkey (just turned six) may have ADHD. We've noticed that she really struggles to sit still (it's really apparent when she's with other kids her age) and also can't focus on one thing a lot of the time (though she'll also get hyper-focused when playing, and angry when she's interrupted).
School haven't mentioned anything, but they have mentioned that she's often tired. She gets plenty of sleep, and while she does cycle or walk to school most days, and has a few clubs and things, it's not excessive. We wonder if she's masking while she's at school, and that's wearing her out.
So - what I'm really after at this point is recommendations for stuff to read up on, before we bring it up with the SENCO at school. And any general advice, I guess.
Not much advice as such, but NHS has a very long waiting list for assessment and then another wait for treatment...going private isn't cheap but quicker.
Aware that isn't much help, sorry.
To be honest, at this point anything is helpful (I did suspect as much).
My daughter shares some of those traits, also aged 6. She’s knackered from school, socially not physically. I’ve long looked into autism diagnoses but concluded that’s probably not the case. “Masking” makes sense to me from what I’ve read about autism, but in my daughter’s case I’ve concluded she’s just like her mum and dad and finds social interaction hard work, along with being a bit of a perfectionist and therefore finding the expectations of school work a lot to deal with.
we’ve recently made the very hard decision to Home Educate. Here’s a link
https://homeedlife.co.uk/benefits-of-homeschooling-in-the-uk/
We are only 8 weeks in for treatment and it is working, but is still being tried and tested to get dosage right.
Has made a big difference and I suspect once dosage is sorted it will be an all day fix.
My wife works for a company called Problem Shared that look at assessing children from 7 upwards for autism and ADHD so if you don't get anything sorted I the next 6 months they would be well worth a call. Happy to put you in contact with Mrs Rockwell if required mate.
I’ve long looked into autism diagnoses but concluded that’s probably not the case.
Not sure if I've read this right, but — respectfully — it might be best to let the health professionals make that judgement.
We had no choice but to home school my daughter for years (school refuser with autism and ADHD) and there are serious downsides to it.
OP - Talk to the school now, see what they think and if they agree then get requesting a diagnosis pronto. It can unlock a lot of support at school, if needed.
Cheers all, that's super helpful - I might take you up on that @chestrockwell.
We have considered homeschooling, but she loves going to school (and our local primary is pretty good) so we're not super keen. Always an option, though, and she does have a couple of friends who homeschool.
Speaking to school would be a good idea as they can tell you if there are other observations about how she is in class, or, at least make them aware if they've not spotted anything. Masking is very common in girls, whereas boys tend to be a little more energetic/explosive - but of course that's just averages.
There will be many other children in a similar position, and the school will already have a number of plans in place which they may be able to implement for your daughter. However, they will also be limited by funding and existing spend, so one way to help both your daughter and the school is to get a diagnosis and then complete the EHCP forms for approval by your local council. This should then lead to more funding be pushed to your school.
As noted above, wait times for assessment through local authorities are very, very long. You can get them done privately but this is potentially around the £1k figure. If it proves to be assessed as ADHD/autism then you may be able to claim some of that back from the council IF it's all done in the way they would do it, so worth asking around when working with private companies.
There is an increasing wealth of information out there, but I found "How not to murder your ADHD kid" by Sarah Templeton very enlightening and easy to digest (it's also available in audio book format, narrated by the author herself). While it focusses more on slightly older children, much of the observations and potential behaviours are explained and suggestions made about how to support your child.
Father to a 15 yr old who was diagnosed with ADHD last year. There always were some signs (school refusal, hyper-active, always liked to be surrounded by a million soft toys in bed, clothes often feeling uncomfortable), but going through puberty brought the symptoms out much more. Unfortunately the waiting list for NHS treatment was too long so we went private in order to get her rest breaks and extra time for exams in school (this includes her GCSEs that she is sitting in the summer). What we subsequently found out was that the clinic that diagnosed it aren't able to prescribe treatment so we would have to pay even more to another clinic to get that. To be fair, we didn't originally want to go down the medication route as we love her as she is (visions of a sedated Jack Nicholson in One Flew Over the Cuckoo's Nest), however, we now feel it was a mistake as medication may have been beneficial to get her through exams.
So what I am saying is to get on the NHS waiting list even if you do end up going private and, if you do go private, make sure they can prescribe treatment.
+1 on speaking to teachers. My child (currently 8) had their official diagnosis confirmed recently, after the ball started rolling a couple of years ago. In that meantime, however, the savvy teachers have given some pretty good support, including an ongoing personal development plan and other allowances and recognition (like being allowed to take regular time out of tasks etc.)
The diagnosis process was kicked off by the school and handed off to the local hospital, and consisted of some questionnaires filled out by us and the school, and a couple of face to face meetings with doctors. We're in Scotland, not sure if the process elsewhere is much different.
Exercise helps with concentration, morning exercise especially - and may actually help with the tiredness if it's based on mental load.
(I'm quite sure I have undiagnosed ADHD also, her current struggles mirror my childhood experiences very well - which does mean I'm pretty good at explaining things to her and helping with strategies etc!)
Absolutely speak to school, if there are symptoms, they can do some things to support and once officially diagnosed more support can be put in place.
We went private and we are paying for prescriptions but after 6 months, it'll be transferred to the GP practice and the prescriptions should be much cheaper (free, thanks to being in Scotland). GP are keen to make sure the medication is settled and stabilised hence the 6-month wait.
We got this just as prelims were started so hoping to get better results/outcomes for actual highers. The standard grades (or whatever they are now) weren't as planned and that was what got us back to thinking it was more than borderline now.
Since the official diagnosis, school have been very good. I think what has helped is seeing the medication having a positive impact. I say medication, but I think it is a stimulant and seems to allow far more focus which seems to have helped.
The concern was the medication would dull everything, but as it is a stimulant and aids focus it doesn't appear to have had any negative impact.
My eldest (7) is currently at the start of a long process of assessment in Scotland. No official diagnosis yet but he's showing all the hallmarks of the person who gets by with good grades and no disruption only to get diagnosed in their thirties. The waiting list here is looooooooooong but we're lucky enough to have excellent support in his school.
I'm following this thread with interest for any stories/advice I can glean from others. For what it's worth, here's the advice I've had that's been most useful:
- Remind yourself to be patient!
- If you have any instructions, make sure they're clear and unambiguous (eg, 'stop annoying your brother' is less helpful than 'stop poking your brother's face')
- Deadlines really help - eg 'you've got 5 mins to get dressed before we have to leave' or 'we need to leave the soft play in 3 minutes'
- Remind yourself to be patient again.
- If (when) you lose your shit with your child go easy on yourself.
Thanks again all, some good stuff to think about there. Getting ready is definitely a struggle sometimes!
Forgot to mention, since starting the medication eating has improved, less junky stuff and more healthier stuff, drinking more water as well...I'm assuming being hydrated and fuelled is also helping the focus.
We started the process about a year ago at 7, had a letter last month to say they have the forms, not expecting anything quick.
We got to that point via some behavioural help which has helped with conveying feelings, having a routine for mornings on a poster with clock face times (must do one for bed time too). The school have helped with allowing them to work on or giving plenty of warning that one task will finish and another start.
A friend with a lot of experience in neuro diverse teaching had also noticed traits in how they were socially and asked if were getting any support at school.
Things are steadier currently, could be that this year's teacher is more regimented which suits them.
Some interesting conversations with my wife, things that I took to be perfectly normal and in common with our child, apparently aren't. Still not sure which of us is the odd one 😆
School haven't mentioned anything, but they have mentioned that she's often tired. She gets plenty of sleep, and while she does cycle or walk to school most days, and has a few clubs and things, it's not excessive. We wonder if she's masking while she's at school, and that's wearing her out.
One of my lads has similar traits, but is now 5 years older. The tiredness and anger are really notable. At times he has more physical stamina than his older brother (and all of his friends), but it comes at a cost of incredible tiredness (including inability to speak).
We had him assessed privately - it involved school input as well as parental (surveys) and a lot of testing with him (which he enjoyed). He was assessed as gifted but with "slow processing." No sign of ADHD or autism. I think I posted a thread about it here.
The stress of school was huge and masking was definitely exhausting him.
Since that we've homeschooled him (and his brother) developing curriculum using a combination of gifted student programmes from the USA that have been really impressive. But both he and his brother didn't like school and are much happier now.
Just recently he's been struggling a bit behaviourally and we're thinking of getting another check because the ADHD traits seem strong, as well as similar to some of his friends.
Twin 14 year old boys, wife diagnosed autistic (and granny should be), son1 fully diagnosed a bit of everything high functioning adhd and autistic, dyspraxic, tourettes, son2 is similar not as bad. Son1 the school was next to useless cos he wasnt behind two years and burning the place down they didnt give a monkeys in Primary sch years, toward the end of his time there the wheels were falling off... he would mask all day and fall apart as he stepped off the grounds. Awful time, covid it got really bad. we then went private after waiting years.
everything confirmed. wife was reading, listening and talking to everyone. We took the LEA to court three times and won in the end to get an ehcp, he was already at More House in Farnham. we had help fighting it but cost us the earth.
son2 wheels fell off in primary, one or two of his teachers were horrible, in the end during lockdown he was allowed in ironically and did really well in the little classes. so we just found a little school with little classes. Now paying vat on this one 🙁 Both are doing brilliant, we have put our lives on hold to get them where they are now. skint but recovering. What a journey.
My eldest is 35 and was diagnosed last year. The drugs are wholly necessary to slow the processor speed of the brain. Getting the dosage right can be problematic too little and the over-thinking and processing is still wearisome too much and the patient can't sleep. Depending on their physical make-up caffiene, alcohol and nicoteine may not be usable in future.
As Dick Barton says getting the diagnosis and the prescriptions prescriptions will leave you in an expensive place until the NHS agrees to take on the treatment plan. Good luck.
getting the diagnosis and the prescriptions prescriptions will leave you in an expensive place until the NHS agrees to take on the treatment plan.
Good point.
Very important to note that NHS trusts can be reluctant to recognise private diagnoses and to allow NHS prescribing of the drugs.
Even when people have used the same company that they outsource their own assessments to.
We have found that secondary school has worked so much better for our daughter as she likes the set routine and shorter lessons (ie, she couldn't cope with whole days doing the same/similar thing in primary school and wanted to move on to the next thing). We struggled massively with school refusal at primary school but she has flown through secondary school without the faintest wobble.
@chakaping Even more so if it is the same consultant but working in the private sector.
Where to start?
I have ASD, am dad to an 11 year old with high-functioning ASD and suspected ADHD that we started to get assessed at age 6. He's had an EHCP for two years now which has been really handy for his transition into secondary education. We also have a 6 year old who is possibly showing signs of ADHD, but she's a girl so could be masking high functioning ASD. We have a 9 year old who is incredibly driven, precise and outstanding at everything she puts her mind to. I suspect she may also be masking but it's at an almost genius level high function so it's hard to tell. The dogs however, appear fine.
I'd start a multi pronged approach right now. Speak to your doctors, to school - ask to speak to the SENDCo and I'd call CYPS at your local council. I'd also try and talk to a private Occupational Therapist in your area as the NHS assessment backlog is frankly disgusting. I would strongly advise against diagnosis yourself. The DSM-5 assessment isn't something you should just do based on the numerous online tests.
You will meet many very well meaning but entirely ****less people who embrace the stereotype of tweed jackets with patches, flowing far too big Laura Ashely dresses infused with lavender and hypnotic barely audible voices. None of them will have each other's contact details, appear startled when you ask what the overall process is and generally fail to deliver anything of substance without close supervision. You will have to drive all of it along. It's hard work but you will get there. They will be incredibly nice so you must also be nice no matter how frustrated you get - they're overworked, stressed and have WAY too much empathy/emotional attachment to what they're doing. That said, go with your gut feelings and be prepared to fight for your child. We had a SENDCo at a previous school Euan attended who decided a great way to motivate him would be to shout in his ear. She also claimed that he was "getting better" which must be a world first in Autism. Evil witch.
Please say your address, your school's address and your doctor's are all in the same council? Having to jump boundaries is beyond frustrating. Really, nobody will have any knowledge of the process involved if this is the case despite running through it last week with someone else.
Always ask for a timeline for deliverables, follow up every phone conversation and meeting with an email confirming what was agreed, print that out to PDF and stick it safely in a folder in oneDrive or elsewhere you can share with your partner, potentially the school and your doctor. Scan every document you get, save it to the same folder. I once had to dig out one of Euan's assessments at hotel check-in at Disneyland Paris of all places. I've also had to dig it out during various meetings with school & the council. Having our backup dossier to hand was unbelievably useful.
One of our friends has just run through a private assessment process resulting in a diagnosis of ASD and ADHD. This was really quick, but as others have said was expensive (~>£3k). The alternative would be to wait in line for an NHS assessment - they were advised this could take up to 5 years which would have taken her well past the transition into secondary. They're now running through the EHCP process with the school and LA.
Good luck, keep us posted on here: it's a wonderful resource with an amazing collection of life experiences and advice.
Edit: the swear filter doesn't like Mrs Doyle's profanities? ****!
My daughter shares some of those traits, also aged 6. She’s knackered from school, socially not physically. I’ve long looked into autism diagnoses but concluded that’s probably not the case. “Masking” makes sense to me from what I’ve read about autism, but in my daughter’s case I’ve concluded she’s just like her mum and dad and finds social interaction hard work, along with being a bit of a perfectionist and therefore finding the expectations of school work a lot to deal with.
we’ve recently made the very hard decision to Home Educate. Here’s a link
https://homeedlife.co.uk/benefits-of-homeschooling-in-the-uk/
Genuinely interested in this approach. One of my cousins in the US does it (but she's a nut job) - I know you say your daughter finds social interaction hard work but wouldn't home schooling make social interaction even harder? I think kids can learn a hell of a lot from what I'll loosely term as "real life" that doesn't include sitting in classrooms learning about Shakespeare or how to draw a tree etc but I'd be worried about missing the social aspects of what school brings and how that'd impact on kids in later life...
I'm diagnosed ADHD and have been medicating for about a year on and off. The drugs and private prescription cost ~£200 a month, which is not insignificant... Our local authority don't do Shared Care for adult adhd, so I can't move to NHS. They will consider it for under 16s, but not keen.
To emphasise one of the points above, I was worried about being "sedated" or experiencing other negative effects like those associated with anti-depressants, but that is completely not the case. The drugs are mostly strong stimulants that have the effect of clearing your brain and removing a lot of the noise. I find I am so much more awake when I'm taking them. There is also no "withdrawal" so if they ever want to take a break, they can just stop for a bit. You need to see a psychiatrist rather then a psychologist if you want to go down that route.
I am father to three kids (10,12,14) and they all show clear traits. The boys are very different to the girl in the way it's manifested and she is much more able to turn it into a superpower. For the boys, it's similar to what others have said - getting in trouble at school, inability to understand instructions, anger, intolerance of noises, feeling unfairly treated and fury if something doesn't go to plan
All of them have the common traits like difficulties with sticking to tasks they aren't enjoying, occasional disordered eating, strong feelings about textures of clothing, and an ability to completely shut their ears to anything their parents say.
I won't repeat all the advice on schools and assessments etc, but one thing that had me raising my eyebrows was the idea of home-schooling. The thought horrifies me. During covid, the experience was excruciating and there is no way we could provide enough stimulation and variety to keep them in their seats for more than a few minutes.