Undiagnosed ND girl - very hyper, does it get better?

[Lylaswanie]

I'm getting more and more frustrated with DD (8), I feel every day is a struggle. She's not diagnosed as we weren't aware she was ND until she was almost 5.

She was very verbal early, hit all milestones on time, always pointed and asked for things, no unusual tantrums, great eye contact, social. Went to nursery since she was 2 and when she left the teachers said she'll do amazing when she goes to school. At that time she would be happy sitting down doing some art, she'd have a go at all activities, listened etc etc. Just a typical, happy child, very well behaved too.

As she's getting older, we and her school can see clearly she is ND. I'm trying to put her on a waiting list for assessment, I've got an appointment with GP soon.

The thing that worries me the most is that she is VERY HYPER. She isn't hyper at school, but when she comes home we struggle to have a back and forth conversation with her. She just babbles irrelevant things, winds us up constantly and bounces off the walls. It's starting to impact my mental health as I really don't know what to do to change things. I take breaks from her by just going upstairs and leaving her with her dad. She's becoming a bit more unfocused at school too, makes mistakes, very slow with work and she's aware she is no longer doing as well as she used to. Last year she excelled at some many things.

Can anyone offer any advice? Do things get better when they grow or are we just going downhill?

School suspects ASD, but I'm sure there is ADHD as well.

Thank you. This is just an example and I wouldn't ask so many questions at once.

The trouble is she gets angry if we don't understand what she says and sometimes 'tests' us by asking us questions about her story 😑. So I want to make sure she feels like we are listening and trying to understand her story. It isn't easy.

If you want a recommendation for a brilliant SaLT for verbal autistic girls and you're vaguely near the SE let me know. Understandably at primary age most SaLT input from schools is focused on word formation rather than social communication but this is the age where the gap between ND girls and their peers really widens.

With your example, she may well be finding back-and-forth conversation quite hard work. You could try echoing back, which prompts, rather than asking questions, which will interrupt the limited focus she does have.

So

"Mum, Lily's being bullied you know"
"Lily's being bullied?"
"you know, they were choosing the animals and..."(tails off)
You, encouragingly: "choosing the animals"
"ummm, they were choosing animals and then Elsie told Lily she wasn't very good...blah blah...so, yeah she was being bullied."

If you can pick up on something that makes sense she will feel listened to. So "Hmm, I wouldn't feel happy either if someone told me I wasn't very good." might work to reassure her you've heard her or prompt more of a conversation.

The other thing which is a tiny adjustment but has been incredibly valuable to me actually came from a work training event rather than any parenting advice, but it was to give autistic people 6 seconds to process before prompting for a further response. Six seconds feels like quite a lot but it does work, if I say "DD where's your water bottle" the temptation is then to follow it up 2 seconds later with "DD, did you hear me? I asked where's your water bottle" and then 2 seconds after that with "Is it upstairs maybe?" at which point she's overloaded. I now do "DD, where's your water bottle" and wait 6 seconds and quite often I then get a response. So in your example, if you were to prompt with "Lily's being bullied" or "choosing the animals," give her plenty of time to resume the story on her own terms.

(Having said that, some autistic kids find echoing back unbearably irritating - I take no responsibility if your DD is one of them!!)

Thank you so much for your suggestions, that's very helpful and will take that on board. I can totally relate to your water bottle example, she does process things slower and I suspect if we did give her 6 seconds the outcome may be different.

We live in SW London but happy to travel x

I've PMd you.

With your example, she may well be finding back-and-forth conversation quite hard work. You could try echoing back, which prompts, rather than asking questions, which will interrupt the limited focus she does have.

Yes, exactly this!
(You can ask questions after she’s finished if you need to.)

give autistic people 6 seconds to process before prompting for a further response

Yes, agree, give extra time for processing.
Another tip OP is to always start instructions with her the person’s name (as PP did). We are wired to pay attention to our name. So ‘Anna, dinner is ready’ works better than ‘Dinner is ready Anna’ because she might miss everything you say before her name.

We also found that lots of exercise, particularly that with proprioceptive input, made the world of difference, so much so that DD (now 14) now goes for a swim or run before school if she has an exam. She now feels the wiggles/fidgets as "I need a run," or "I need to go out and clear my head." She is now able to manage herself really well and will take this into adulthood. Nobody in high school that didn't know her in primary would think she was ND, it's made so much difference.

Don't faff around with kids classes so much, unless they are always on the move in them, as so many have the kids taking turns and waiting for others to finish, which is the opposite of what she'll like. Think of the way Phoebe runs in friends - that will feel great to her! Get her out running, splashing in cold water, feeling the rain/wind on her face, roller skating, on the trampoline, swimming until she's tired, dancing....

Don't mistake the things we think are relaxing as relaxing for a ND brain, yoga, calm music etc. If there are wiggles, get them out - a screen will only anaesthetize her, not fix the underlying problem.

Im another recommending excerise. Find something she loves and encourage life long participation.
DD swam with a team from age 8 and really needed those 5 to 10 hours of serious excerise a week. DD was one of the few who didn't drop out through teenage years and as shes matured she really sees the benefits for her, and is still swimming regularly.

That's such a great idea, doing some physical exercise before exams/school. I'm glad your DD is doing so well ❤️.

I feel like DD's school is so pushy too and I do wonder sometimes if it's the right school for her, as besides the fact they work so hard at school (working ahead of National curriculum by almost a year), they still have homework and lines to learn for drama and a compulsory musical instrument. There just isn't enough time for a child like her to decompress. She's still copying with the academics (as she was ahead of expectations last year) and everything in general, but I do wish she had more time to play. She's starting to slow down a bit as I mentioned in my OP.

From next term we are cancelling all her after school clubs (which she insisted on attending - we never wanted them) and just take her out for an hour or two after school, also doing some walks home rather than driving, as someone suggested earlier.

If the school is pushy then it might just be that she’s feeling the pressure. I think she has done well to get to 8 before it became a problem. Is she in year 4? I guess as you go up towards year 6, the pressure is on to be ready for senior school. Do they do SATS or private school version?

No advice as I'm still trying to get her support/ diagnosed. My son was straight forward to be diagnosed but my daughter, everyone is quick to pin her bad attitude/behaviour on just being " naughty" (ergh). I got her a gymnastics bar which has been amazing for burning her energy though. Was like 35 pound on Amazon

She is in Y3. I think they do tests all the time for their internal purposes, I believe private school versions (and not shared with the parents). It's a prep school.

I wish it wasn't so pushy, we moved her not for academics but for small class sizes and a more nurturing environment. She would not have survived at a state school for long and she does not want to be in a state school after her Reception experience, she makes that clear every day 🙄 .

The interrupting is what I picked up on too (ND myself, and parent of an ND daughter with similar trajectory to yours). Questions are fine, at an appropriate break, if you disrupt the flow of thought it's incredibly hard to get back. She can 'quiz' if she likes, I'm not suggesting you just let it in one ear and out the other (if she's quizzing you it may be that she's getting angry for you not understanding because she's assumed you didn't listen, not saying that's what you were doing!)

If you can buffer your question with at least one comment relevant to a bit you did grasp, I find that really helps ease my DDs frustration. Eg, let her tell the story about the animals, draw what you can from it (you say you don't know who was bullying Lily, but she told you that Elsie was the one who said she wasn't very good, so that narrows it down) and then sat something like "oh that wasn't very kind of Elsie, I wouldn't like it if someone told me I wasn't very good either". When was this, was it at break or in class? And then let her tell whatever more story this initiates, and repeat. DD might say "in class, we were doing science and we had to group animals by their similarities" for example, or "at break time, we were playing zoos and we were choosing which animals we wanted to be". That can then lead you to your next question as needed "gosh, I wonder why Elsie didn't want to let Lily choose to be a zebra, who else was playing, did anybody stand up for Lily or did they agree with Elsie". Or if in class "I'm sure she was doing her best, everyone finds different tasks tricky" who else was in your group? Did anybody tell a teacher " and so on and so forth.

It's also worth considering which information you're actually interested in. I'll be honest, DD comes home with all of these stories regularly and unless it sounds super serious/important I don't necessarily need or want all of the fine detail. I will gather a general gist of the situation, and then lead down the line of resolution. DD has a strong sense of justice, and likes to feel things are resolved. In your case I can do sweet f all about Elsie +/- whoever else bullying Lily, and I'm not about to start going into school for other girls' issues. But if we can steer DD to a point where she acknowledges there was an outcome, of we can troubleshoot how to ensure there is an outcome next time, she usually feels heard and validated and that's enough.

Eg "did Lily tell a teacher?"
"Yes"
"What did they say?"
"They told Elsie and Katie that it wasn't kind to tell others they weren't very good when they were trying their best and they said sorry"
"That's good then. I'm glad a teacher was able to help. You can have pasta or curry for tea, which would you prefer?"

Or if they didn't tell a teacher "oh. Maybe next time, you could do X to help your friend if you see others being unkind, what do you think?"

If she feels it was an active conversation that you have engaged in, she's far less likely to feel the need to quiz you on it after, and actually, all of the context and background isn't necessarily relevant or needed to achieve that!

Autistic mum of autistic daughter and ADHD son here 👋

In additon to all the advice already given, I’d recommend googling Tony Atwood & Michelle Garnet who are experts on autism in women and girls. Also Dr Luke Beardon. And I second the recommendation to look up Dr Russell Barkley re ADHD.

Thank you for your advice and sharing your experience, that's very helpful xx

It makes me feel less alone knowing there are boys and girls out there who are struggling with the same issues.

Thank you, I'll look it up right now x

Another recommendation for swimming. My daughter is in a club, now swimming 4.5 hours a week and it has been transformative. She's just turned 10. It's made her so much more independent, confident and happy. She still wiggles and dances continuously the rest of the time at home, rather than sitting down ever, but she sleeps better, eats better, and is properly independent with dressing, hair washing, packing her bag etc.

My daughter, who is slightly older, is very similar to yours OP! No problems at all before the age of 4, in fact quite the opposite, very sociable, chatty, hugely advanced, confident and bright. So many people used to say to us "she'll do so well at school" and they've been so wrong! Looking back, we never saw any signs of anything until she started school.

Fast forward to now, she struggles hugely at school. Lots of friendship problems, on her own a lot of the time, always in trouble for shouting out in class, getting up out her seat and annoying other children. Working at least two years behind in Maths (having been so advanced early on,) and has zero confidence, very anxious, doesn't even like talking about school now. School have always suspected ASD (we had her assessed some years ago on their insistence, she was found to have some traits but not enough to diagnose.) We are leaning more towards ADHD as she is very hyperactive - interrupts constantly, won't focus on anything for longer than two minutes, brain constantly going a mile a minute, always asking questions even when she knows the answer. She is very immature compared to peers and still enjoys lots of younger kids TV, toys etc and just runs/jumps around like a younger child most of the time! Also bangs her feet a lot in the house, can't seem to do anything gently, cuddles roughly etc. Just a whirlwind really!

We have yet to find anything that works for us, but have been reading this thread with interest! I definitely think things get worse towards puberty, this is the peak age for ADHD. We are looking at a private diagnosis to hopefully try some medication for her, though I do worry a lot about side effects of medication and how it might alter her otherwise lovely personality! It is exhausting, so I can totally sympathise with you!!! 🙂

If you would be in two minds about medication anyway @PinkPetal21 then it would be worth getting an OT assessment to look at your DD's sensory profile. It is amazing what a difference meeting a child's sensory needs can make to their attention and concentration - my DD's is never going to be stellar but with the right OT support she doesn't need medicating for now.

Thanks RavenLaw - that's interesting to hear you are managing without medication. What kind of things does the OT do that helps your daughter?

Yeah, just heard others reporting side effects such as sleep problems, weight loss, depression etc, that do worry me a lot!

Re medication, I was very anti but it makes a giant difference. Mine only take it on school days.

Controversial but anyway - I’d see how she reacts to a couple of VERY high short doses of caffeine. Most of the meds are stimulant based and if she quietens right down you’ll have a good idea of how she might react to stimulants. I have pro plus or emergency redbull for appropriate medicinal use.

Yes, I mean maybe a less pushy private school might be the answer long term? She probably would do just as well there, if not better.

I agree about state schools - my daughter wouldn’t survive there either - the class sizes are just too big.

Thank you for sharing your experience 💐💐. I hope you find what works for your DD, bless her. Life must be incredibly hard for her.

I have suggested to her changing schools but she was shocked at the idea as she's mostly been doing well and she loves it with all its imperfections and pushiness.

But we are keeping an open mind and willing to move if we find something that works better for her.

Thank you!

Have you seen any side effects Teenthree?

Good idea about the caffeine. I personally react really badly to it, so be interesting to see if she takes after me! 😳