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.

Autistic parent of 3 autistic girls, here.

I expect that what is going on is that your dd is masking at school and is then letting out all her stress in her safe space, which is home.

Mainstream schools with classes of 30 really aren’t great environments for ND children (especially now when they have been cash starved for the entire time of the last government) and I expect your dd is getting worn down by her environment at school. It is a bit like going to school every day wearing shoes that are too small.

My experience is that it gets worse, not better until you find a suitable environment. And high school is where it really gets worse without a suitable placement.

Your dd will need an EHCP. You can get a quicker diagnosis atm if you go via the Right To Choose service from your GP.

Also just wanted to say that I have a 6 year old with autism struggling with school at the moment and she’s in a very small, independent school. What has started off her school refusal is a spell of bullying by an older child. It has wrecked everything.

Your dd will probably thrive in the right environment with the adjustments she needs. She’s still a bright child, just like she was when she was little but school is dimming her light.

Thats my opinion FWIW.

Thank you for your advice, that's very helpful. She is actually in an independent school, we moved her at the end of Reception. When she joined there were 14 girls in the class, now there are 20. So I believe the increase in the class size had an impact, there is a lot more behaviour for the teachers to manage.

This year also they have 2 teachers, one who does Mon and Tue , the other one does the rest of the week. She loves the one on Mon and Tue but is terrified of the one who does Wed, Thu, Fri, which doesn't help matters.

Can I ask you if your girls are hyper? Or how do they behave after school? DD seems very happy coming from school, just incredibly hyper and unfocused.

One of my girls also has ADHD and yes, she would often come home like a coiled spring, spinning, climbing on chairs and balancing on one leg high up on furniture, letting out sudden screams etc.

Maybe your dd would benefit from movement breaks at school? As she gets older, the time that she has to concentrate is probably increasing and that’s very hard when you have ADHD.

Another thing that has helped my dd who also has ADHD is horse riding. She has always enjoyed the sensory feedback and turned out to be brilliant at it. So maybe a down time activity like this would help your dd?

OP, what kind of behaviours are you and school seeing? Apart from the hyperactivity, that is?

She is a bit literal, she's very young for her age in behaviour, despite being a very well developed girl physically. She still gets excited by toddler toys, electronic toys etc.

She's got communication issues, she struggles to articulate everything (when she was 4 she used to be the most verbally advanced child in her class). It's very hard to watch the deterioration. She can't sit and talk, she just paces up and down, jumps, toe walks ...it's difficult to have a conversation with her.

I have to get her dressed in the morning for school and rush her with breakfast as, if I rely on her, we would never make it on time. She gets distracted in the middle of tasks and needs constant reminders.

The list is very long. I see many other girls of her age (she's almost 8 and a half) and you can absolutely tell the difference.

Is It her feelings that she finds difficult to talk about? It does sound to me like she probably has unmet sensory needs.

Autistic kids can be very clever and able but they just don’t function well in a world entirely set up for NT people.

Another thing to bear in mind might be that at 8, girls starts to head towards the teenage years and social rules get confusing for some one autistic.

I think you might need to adjust your expectations and accept that maybe she isn’t going to be able to ‘sit and talk’. And that’s ok. And if she’s having a sticky patch right now she will be able to come out the other side with support.

How much does she sleep? Actually get to sleep, rather than “in bed by”?

Also do you walk home from school or drive?

She sleeps around 10 hrs, sometimes more, sometimes less.

We drive to and from school as it's not very local.

My daughter is the same. I understand now that she needs to get her 'wiggles' out. The winter is harder as the weather isn't as nice, but I try to take her to the park after school as often as I can.

We have found fidgets useful, especially slime, she can be trusted to play with this in a non messy way. Also a hobby, hers is gymnastics. She is constantly cartwheeling and handstanding but it is contained! In the summer I found leaving the back door open so she could run in and out and jump on the trampoline as she pleased was very calming for her.

I found it an adjustment initially, but now i understand her more and we get on much better and I do not get anywhere near as frustrated by her behaviour. She literally can't help it. I just had to change my way of thinking. She calls the hyperactivity sillys in her brain.

My daughter is not yet diagnosed we are awaiting an assessment. I suspect asd, the school suggested we get her assessed for adhd too.

She finds it hard to talk about anything. She start to talk about things randomly, with no context and gets angry if we don't understand what or who she is talking about.

Ex:
DD: mum, Lily is being bullied you know.
Me: oh no, who's bullying her.
DD: you know, they were choosing the animals and...
Me: who were choosing animals,what kind of animals. What activity was that?
DD: arrrghhh...they were choosing animals...arrghh
Me: What animals, who was choosing them?
DD:....ummm, they were choosing animals and then Elsie told Lily she wasn't very good...blah blah...so, yeah she was being bullied.

So at the end of the conversation I still didn't know who was bullying Lily, what kind of activity was 'choosing animals' , whether it was in the playground or part of class work. I have to admit, I don't know how to help her. Feels like her communication skills are deteriorating by the day.

Can you build in a bit of walking on the way home from school? Maybe park a few blocks away from school? Or send her straight out to the garden when you get home.

I found DD was so much better if she’d walked home rather than driven.

Sleep sounds decent so that’s good. No obvious trouble falling asleep or staying asleep.

It sounds obvious but have you explained to her that she needs to start with the context? Given some examples? It can be a hard concept to grasp (even for some adults!)

You said she is well developed, do you think she has started puberty? The hormones can kick in well before things like breasts or periods.

I have talked to her about context many times before, she only gets angry and won't take anything on board.

Now that the weather is getting better, we are thinking about taking a walk after school. Parking a bit away from the school and walking to the car.

She hasn't started puberty yet, no obvious signs.

Lots of physical activity daily, swimming, the park after school, walks, football clubs, a game called just dance or Wii yoga. Also consider meditation with music

Is she distracted while chatting? Have important conversations in quiet spaces, try post exercise or early in the day or in the car, use her name and have full focus. Ask her what happened first, then next, then last. Research word games

Thank you, great ideas x

there might also be a way of using visuals. Maybe she could create her own visual picture list of things to do before leaving the house, laminate and tick them off as she goes.

In your shoes I’d make it fun and play lots of SaLT type word games

My 6 year old is like this - she gets very frustrated if I don’t immediately understand what she is talking about without much context.

Some people lack ‘theory of mind’ which means that they unconsciously expect the listener to have the same knowledge that they do. And this is true of me as well actually. So I have to work on it!

Get her in front of a paediatrician asap and talk to them about private assessment and diagnoses.

I think you’re spot on about ADHD, and meds can make a massive huge difference. Like night and day. You’ll need an EHCP too but finding out what you’re dealing with will help enormously.

Also have a look at the YouTube clips of Dr Russel Barkclay.

That communication sounds difficult to me at least in part because you’re bombarding her with questions instead of listening properly.

Listen more, maybe repeat what she said to affirm her, but let her speak otherwise. At the moment it seems you keep on asking her things in the middle of her story and that probably isn’t helpful..
Eg
‘who’s bullying Lily?
who’s choosing animals?
what type of animals?
what activity?’
all said while she’s trying to get her story out.

It’s distracting and unnecessary at that point. It could well be frustrating her. I felt like saying ‘arrghh’ too reading it (sorry).

Sorry, I might be totally wrong, but it really jumped out at me how much you interrupted. Your communication style may not be working for her and as the adult you can accommodate and help her.
I have a child with asd and adhd too. Patience helps a lot when communicating.

(For what it’s worth, when my neurotypical children were that age they used always start a story in the middle too. I’m not a teacher so I don’t know how common it is generally in this age group.)

It struck me that you say she met all of her milestones and nothing stood out until she was 5 - while that's not entirely uncommon with ND girls, it may be worth looking into PANS/PANDAS too, because the skills regression at that age is atypical.

Separately, while you're waiting for assessment, my best advice and what I wish I'd known when my ASD/ADHD DD was diagnosed, is that adjustments are made on needs not diagnosis. So if you are in any position to do so, get her to an independent SaLT and OT and ask them to do an assessment and report. Your description of your DD's conversation patterns is one which leapt out as I've just done a questionnaire for SaLT for my own DD and starting conversations in the middle, going off on a tangent and expecting listeners to know who they're talking about all feature in that questionnaire!

I always joke that we have to run extremely hyperactive DD (AuDHD) like a spaniel to burn her energy off. Her preference is outdoors and either in mud or up a tree. She's 13 now and still has limitless energy so on top of 10 hours of dance classes a week and dancing competitively at weekends, we have a trampoline in the garden that's well used plus a spinning bike and treadmill. She also has a membership to the local trampoline park that she uses weekly. She's solid muscle and even when she's relaxing or hyperfixated she's not still.

Despite all this she doesn't sleep well and sometimes speaks so fast that she stutters because her brain is moving faster than her mouth can work. I let her monologue as much as possible as she just needs to get stuff out rather than converse. Her rants about school when she gets going are epic (and often hilarious, especially when she feels slighted!).

Thank you, great advice. I'll look into that.

In hindsight, there were probably early suble signs that we missed. And nursery teachers missed as well, because she was so verbal, so friendly, very bubbly, great eye contact, loved nursery, always flexible with all activities. She wasn't the typical ND child, but it's very obvious now.

Thank you for sharing your experience 💐.