Girls with ADHD (ADD), what changed after diagnosis?

[Rattledby]

If you have a DD with diagnosed ADHD, I'd like to know if anything changed in practical terms after diagnosis? Has the school made adjustments, do they get support in exams? Also if medication was recommended, has it helped?

I have suspicions about my 7 year old and don't know if we should pursue a private assessment as the NHS doesn't want to hear about it.

I should mention that DD is more innatentive, day dreamer and only mildly hyperactive.

Bumping for you as I don’t have an answer for adhd although my DD has all the markers. She does have an autism diagnosis but there a huge overlap of symptoms. In terms of secondary school support she was given a long list of reasonable adjustments like going in early, leaving early before the bell, quiet club at break times, access to send basis for sensory breaks missed some lessons missed some home work with no repercussions but at the end of the day still didn’t cope in year8 and has been out of school for a year even with a EHCP. So a diagnosis can help you and your DD and others understand them but if they can’t cope in a big mainstream school it’s going to be hard.

And it’s around age 8-9 in girls things get hard as the hormones kick in. My dd did mainstream primary but nearly had to leave in year 5 due to very inexperienced teacher not understanding neuro diversity at all! But luckily the year 6 teacher did.

My friends son was diagnosed with ADHD and autism around 9yrs old. He lacked focus and daydreamed, couldn't complete tasks. He was quite behind with his education, he was seen really quickly via the NHS and takes medication daily which aids his concentration, he got extra consideration with exams and support.

My son, we noticed he was highly likely to be autistic aged 11, COVID years and made a referral made a couple of years ago, we are still waiting for a diagnosis and assessment having been accepted onto the waiting list. He is quite high functioning, I doubt he will require medication however we have still got extra support for exams but it's not been easy.

The biggest consideration I would ask is your daughter in line with her peers educationally and what are her friendships like? If either of these are negative i.e. she is behind or she is alienated, I wouldn't delay getting a diagnosis privately before puberty and high school.

My 18yr old has just been diagnosed with inattentive ADHD and ASD.

Signs were there from childhood but never really a big enough issue to do anything about.
Until GCSE year when she crumbled, friends, exams everything came to ahead.
Sixth form - we changed schools and the transition highlighted her issues and she requested we look at testing.

Luckily we have corporate cover that includes mental health and because she was seeing the school counselor the referral for private testing was simple.

We have a diagnosis, she feels better that there is an explanation.
We are having to pay out of pocket for the drug titration etc because that isn't covered on our insurance.

Because she was 17 when we started the NHS were pointless. There was no point in referring to CAMIS as she would be too old by the time she was seen and they wouldn't refer to adult until she turned 18. She was in limbo.
We have to get the dose of medication right before the GP will even consider shared care and we still have to go to adult nhs or the go won't consider shared care.

Practically it means she has more time in exams and a scribe if required.
She understands herself better.

I'd say do something now rather than leave it.

Thank you for sharing your experience.

DD is doing well academically, above average in a very academic class of 16 girls. We felt last year that she was underperforming. She said she was terrified of the teacher who was shouting a lot and was a bit old school. So she used to zone out a lot, never finished her work and she was only taking lower level work that she could do easily so the teacher didn't 'tell her off' (her words). This year, with a gentle and kind teacher, she is thriving and very happy at school so we have no worries academically at the moment. She does make silly mistakes sometimes though and day dreams.

Friendships are a bit up and down. She is very social but doesn't quite seem to connect with many of the girls at school. Most of the girls in her class are actually very sweet and friendly and include her but somehow she plays on her own most of the time. First of all she prefers physical stuff like hula hooping, monkey bars, climbing, fire pole whereas the girls mostly just run around, play imagination games, arguing, negotiating and she isn't good at that. She seems to be upset about the fact that she doesn't have friends at school but I don't think it's the others that are at fault. I think she just wants to do physical stuff, not talk much and also she day dreams a lot so can't quite keep up with the girls conversations and games.

In the classroom she is absolute perfection, but very hyper at home after school, drives us mad.

She is definitely ND but not sure what it is. NHS would not put her on the waiting list as she is ok with friendships and not struggling at school.

I think from a mental health perspective any child with a condition like ADHD or autism should be assessed as soon as possible even if they appear to be largely ok because the situation can change quickly and a ‘happy’ neurodivergent child can very quickly become a school refuser or burnt out child.

Before I knew dd1 had adhd her primary teachers were frequently moaning that she was bright but lazy, forgetful, disorganised, didn’t pay attention etc and it didn’t occur to me til she was about 13 when her secondary school could see she was in a crisis that it was adhd. That school put in accommodations without the diagnosis. She also has autism so main accommodations were freedom to go for a walk, flexibility with homework, sat at front of class, allowed to doodle to regulate herself or go to the library (her safe space), support from an ed psych, exemption from overwhelming events and generally most teachers were kind and attempted to use clearer instructions and didn’t tell her off the many times she forgot something. Her adhd in some ways has been an asset because she is a very creative thinker and I was told that she would make really interesting, thought provoking remarks. She now hates her primary school because of the pressure that they put under - particularly the maths teachers forcing her to finish work in break times and I had no idea at the time how unhappy she was. She got an 8 in GCSE maths but her primary school experience meant she hates maths.

After her diagnosis she had access to medication and extra time in exams because she can be slow to process things.

She does sound very similar to my DD at that age and although she’s very academically able the gap between her peers and her social skills widened a lot in year5 at primary. She has perfectionist traits and the fall out from the thought of not getting 100% impacts her with anxiety to the point she would also do lower work to get them all right. With the school system like it is it doesn’t get easier so if you have suspicions keep a diary of behaviour and triggers for a few months as you will need this for any diagnosis. Talk to the school get it in writing some where that your flagging your concerns with them as it adds to your evidence trail should you get to the point of needing more help you have to show the issue hasn’t just popped up but there is a history. I wrote on my DDs school report feedback that I had concerns when she was aged6 and I was laughed at by deputy head in a “silly mummy” worrying about nothing…she got her autism diagnosis aged 10 & EHCP aged 11 at secondary. Trust your instincts.

Any good school would have the same interventions in place for any child who needs them, diagnosis or not. My daughter is waiting for an adhd and asd assessment and my son too and their primary is/was great with both.

I totally agree with you, early diagnosis/intervention is very important but the NHS keeps fobbing us off. Do we need to go private? And how do we know what we need to go for, ASD, ADD, ADHD?
Is there a pre-assessment?

Sorry I have no idea how to go about it. On Monday I'm meeting her class teacher so I'll get more insight into how she's doing at school.

Thank you for sharing your experience and advice. I have heard that things tend to get worse around Y5 and this is when girls especially start struggling.

I'm speaking to the teacher on Mon so hope to get some insight into how she's doing and coping.

I have mentioned to the school last year that she's very hyper at home after school and super excited to the point she's jumping off the walls and her teacher was genuine shocked. They've not seen any of this at school but they did see her being distracted and dreamy and underperforming plus preferring physical stuff at break time. Plus some social struggles.

The school said that they'll do a few things with her during school time that will hopefully reduce this hyperactivity after school but I can't see any difference at all. Not sure whether they've implemented anything to be honest.

H... DD diagnosed at 15 but all signs there from much earlier - if Im honest, from a baby.

It got particularly tough from summer of year 8 and all her teachers put it down to hormones as she was highly academic.

Wish we had had her diagnosed earlier.

We went private for diagnosis as it was just 8 months to GCSEs so wouldn't have got appointment in NHS in time. One her dose stabilised it is prescribed by NHS GP.

What happened for us was

1. Put on meds which enabled her to concentrate - suddely her brain was clear again and she was back getting top marks. From end of y8 her sciences/maths weren't at the top of the class and she said she couldn't think straight - interestingly it didnt affect her humanities/arts subjects
2. Got extra time in exams - not the ADHD but slow processing
3. Allowed time out in exams - would have been great if she hadn't been too embarassed to use it. Her brain would freeze and a 5 min walk around school playground would have helped her clear it
4. exams in small groups - helped focus a lot
5. all teachers knew and were meant to give really clear instructions - some definitely did and this helped, some didnt
6. had SEN coaching - 6 weeks of weekly session with sweet SEN teacher a couple of times - helped her confidence and adaptation and some things practically
7. She felt as if she belonged - online ADHD groups - this is me Mum! SHe's always been great at making friends but always felt a bit different to them and suddenly understood why

Downsides:

1. Sleep - never good - got much worse with Meds
2. Anxiety increased later - but was the pandemic - tough to know which elements

And biggest challenges came at A level - may not be the case for all ADHD kids but the issues of just getting down to it/ not procrastinating/ not going down rabbit holes got in the way then as it does at uni where she is now. GCSEs all stellar - nice and clear what to do, easy to break into chunks. A levels/ uni found it a real challenge to write essays and work solo, and know what to focus on.

And don't underestimate how exhausting having ADHD will be for your DD - having lots of things to process all the time is knackering! my neurotypical brain is so much quieter....

Thank you so much for taking the time to share your experience and happy to hear your DD is thriving with the right support. 💗

Can I ask you what signs did she show from the baby stage? We had no idea until recently or perhaps there were signs we missed?

Also are side effects from the meds as bad as people say?

DD has been overall a very good sleeper, (once she is asleep), she's always slept through the night. Amazing sleeper as a baby too. As she is getting older she's just a bit hyper at night time and struggles to fall asleep, takes her 30 mins on a good night and up to one hour or more on a bad night.

@loveyouradvice im part of a network at work supporting adhd employees and more are finding that AI tools are helping to break down tasks into chunks to help clarify what is needed to get started plus also doing body doubling where they have a regular teams meeting cameras on / off whatever to work on their own work(we work remote a lot) but just having another person “there” helps them focus. Or using the pomadare timer technic not sure if that helps or she’s found her own ways at Uni but for oldiee like me in my 50s it’s interesting hearing how the younger generation are using tech to help ADHD minds in the workplace. I’ve helped a few with regular brainstorming chats to help them break through the “can’t get started” barrier. My teens are both similar but struggle in different ways.

@Rattledby we started regular mindfulness before bedtime at age 7-8 I used the Smiling Mind App as it has some for kids mainly Belly breathing or Internal Weather but our winddown routine at bedtime takes 1.5-2hrs every night. No tablets or screens after 7.30pm, we do jigsaws or gem art plus reading half hour and sometimes gentle yoga everything to calm the “system” or she’s on the bed legs in air rolling around says she feels jingly and whole body’s want to jingle not necessary highly physical just unsettled.

My DD was diagnosed Yr 9 when things really started going wrong. Self-harm, and what school thought was anxiety.
She is very bright, always seemed happy, sociable, very popular etc but had been told off throughout primary for not finishing work and her confidence was ruined. She masked very well so we had no idea how bad things had got until we discovered the cutting. Turned out she'd been struggling for years. Apparently the wheels often come off between years 8 and 10 - mix of puberty, work getting harder (so just being bright no longer enough to get high marks), more pressure on extra-curricular (eg competitions getting more 'serious').
She went on to meds, and school put in place a few things, many of which didn't help. But she did get structures in place for GCSEs. What is put in place by schools depends on the child, and varies from.,say,extra time in exams, being able to leave exams for a break, fidget items, catch up sessions, being allowed to hand work in late etc.
If you get an appointment with a psychiatrist who specialises in ADHD, they will also know something about ASD etc or be able to refer you on, so you don't need to make the decision.

@Rattledby Hi, could have written this thread about my DD10. Just wondered how things are now and if you progressed with diagnosis?