To think this isn't normal for a 4 year old

[Delphina17]

DH thinks I'm mad and that DD, who is 4.5, is completely normal. I wonder if she could be on the spectrum and be good at masking. Or have a different issue that she may need support with.

She still has huge tantrums, hits and kicks her dad (and sometimes me, but not anyone else), gets easily upset and frustrated. She struggles with change and lack of routine (eg. her behaviour this week is becoming very challenging due to it being half-term). She refuses to change her room even though it's set up for a baby and any suggestion of making things look cool seem to stress her out. Her emotions are extreme... Saying goodbye to anyone, even a child she met half an hour before, makes her incredibly sad and there's tears and shouts of 'I will never see XXX again!!!'. She gets really scared easily (eg. She used to be the only child at nursery who would cry in terror if they read going on a bear hunt). She's sensitive to noises, and water temperature (seems to struggle to realize when the temperature is not too hot or too cold), and is constantly fidgeting. She bites her nails to the point she almost has no nails left.

DH says above doesn't mean anything because: she is very empathetic, also extremely manipulative. She's not any smarter than the average 4 year old (nor behind on anything), but she does have a crazy imagination, writes her own small books (draws stories and makes me write what she wants it to say), has imaginary friends and seems to be good at making friends (though terrible at remembering names). She seems to have very strong attachments to people.

Should I push to see a GP or is her behaviour nothing to worry about? Really don't know how to stop the tantrums and hitting - we've tried everything, so that's why I'm thinking maybe there's something else going on.

I would echo the above.

I have one child diagnosed as autistic in y7, and another waiting to be assessed. Looking back there were many signs that neither was neurotypical, but I kept thinking they would grow out of things, or other people told me they 'seemed fine'.

Dd was just quiet/anxious at school, and is fine academically, so they kept saying let's wait and see. Now we have a very lovely, but clearly quirky teen with more tricky mental health issues and the prospect of a long waiting list or an expensive private assessment.

I'd keep notes of any concerns or observations you have, because if you do have an assessment for ASD or ADHD in the future they will want lots of info about their behaviour/development as a young child. And it's amazing how much we forget!

Hi Op, you could have been describing my childhood in this post and I have diagnosed ADHD. Neurodivergence displays so differently in girls than boys that many people just do not recognize the symptoms so I applaud you for questioning where others wouldn't.
It does take forever to get official support sadly but there are resources online that can be very helpful in the meantime.

Yes op, I didn't mean to sound so doom and gloom about the lack of support. Self education has been our saviour. I've learned so much and feel so much more positive as a result. We've had some dark times, but my relationship with dd is so close. I understand her much better. Pop over to the SEN children board, lots of help and advice there too.

Now that you mention it, when she's into something she cries a lot if I stop the activity so may very well be hyperfocus!

Hi Op,

With the way you have described your daughter, reading it felt like you were describing my DD to a T. I first went to the Dr at 4 years old and was told her behaviour was a 'phase'. I have expressed my concerns to every teacher she has had to be told that she's well behaved at school and they don't see what I see. I've been back to the doctor a number of times and I have been fobbed off every time. Everything I've read talks about how girls are good at masking behaviour and my DD is like this at school but the rocket goes up then she gets home.

She's now 10 and after years of trying to get someone to listen to me, the doctor has finally relented and given me the forms to fill in to get her referred for an assessment. I'm convinced she has ASD. I work with young people with various SEN and I see a lot of my DD's behaviours in some of the children I work with. You know your child best - fight for her and get her checked out so you can find out how best to support her. I'm so upset by the lack of belief we've had over the years. It's not like we'd make it up! Good luck OP, I hope you get some answers and support quicker than us!

Thank you so much everyone for sharing your stories. There's so much I didn't know!

It's disappointing to hear what a long road this is likely to be, so will try to get the ball rolling asap. Did those of you with ADHD diagnoses for yourselves or DC start with a GP appointment, or something else? Should I raise it with the school first?

Will have a good read through that ADHD parent guide someone mentioned tomorrow! Only now reading your responses I've realised DD cannot sit still usually and moves around when doing anything. Mealtimes are so stressful for me because of it!

I've been passed back and forth. The school tells me to go to the doctor, the doctor tells me I've got to go through school. School doesn't understand why the doctor wouldn't refer us, the doctor tells me she 'couldn't refer us even if she wanted to'. I broke down the last time I went to the doctor about 5 weeks ago as life of becoming quite difficult and I'm so worried about DD but she sent me away to talk to school again. I don't know what happened but 2 weeks later, I received a text from the surgery telling me that school are best placed to make a referral but if I fill some forms in, the doctor will refer DD. I don't understand, I've quoted the doctor's words above about not being able to refer us but now suddenly she can do a referral! I can feel myself getting increasingly angry that no one is taking us seriously and I have to sit and watch the struggles DD faces everyday. I feel like DD is being let down and I don't understand why it has taken 6 years to get to this point. I'm sorry to go on a bit of a rant, the original post struck a chord with me.

@Delphina17 parents often get stuck in a loop between gp and school, especially at only 4yo. Our gp refused to refer dd until she started school, saying if he referred her it would likely be rejected anyway as it could just be her 'personality' settling, or our failure to manage her behaviour correctly (I kid you not - he even asked if we'd tried rewards and consequences). It took school a long time to get to know dd and even then, because she was "fine at school" they said there was little they could do. I ended up pushing much harder with the gp (asked for second opinion) who finally agreed to try to refer her. By then we'd reached our first crisis point of school avoidance, so we also sought help through the school's family worker (she was truly brilliant, completely empathetic, as her own dc were ND and she recognised both our dd's behaviour and our family's struggles). That set the ball rolling, but we had to do all the parenting courses first before they'd consider any underlying neurodevelopmental causes. Our next barrier was a terrible, lazy senco who made no efforts to attempt to work with us, beyond telling us to do anxiety workshops which we'd already completed via other channels as a result of the GP referral. It took another bout of school avoidance, and copious notes as evidence, before we began to make more progress. The system is completely broken, and you have to be prepared to stand your ground, keep going, and not take no for an answer. Nobody knows your child better than you, so don't doubt yourself. Good luck.

I actually wouldn't worry. She's clearly working hard on her behaviour at school, so of course there'll be some kick off at home.

I was like her when I was little - highly strung, and looking back I can see very anxious. I was diagnosed with OCD as an adult. My husband still can't remember faces, and is also highly strung, very intelligent, maths GCSEs early, physics PhD etc, can't see the point of a lot of social conventions etc. He did get tested for autism as a child but this was 30+ years ago so no concept of a spectrum - I don't think he'd escape diagnosis now.

But, he's a software developer and I am a museum curator. We're happy people with a family. I don't think early diagnoses would have changed this outcome, nor would they be helpful. Our eldest is now attending a nursery attached to a school but we've been running to term time timetables since she was 1, given our childminders availability. We all need that routine and predictably! She has definitely needed this half term as she's knackered, but equally too long off and she gets edgy.

Just be aware of your daughter's ticks and triggers, and as she ages help her manage them. What would you hope to achieve with a diagnosis?

She sounds like me when I was a child and DD tbh, we are both autistic.

Just to add some thoughts about the sensory issues as could be a sensory interrogation issue- how is she with all her senses- balance? does she recognise when she’s full, hungry, needs toilet, feels sick etc?
what about her ability to recognise her body and world around her- bumping into things?can she anticipate spaces say for example of climbing on a wall can she jump from one stone to next by judging distance right? What about pencil/ pen use does she dig it Into the page or know the correct weight to apply?

In terms of sensory things look up the various senses - see, feel touch, hear, taste, smell but also Proprioception, interoception and vestibular sense. For each type think through does she sensory seek in any of these areas or sensory avoid? This will be really helpful for assessment!

Emotional dysregulation doesn’t have to go hand in hand with a diagnosis, although it certainly can. I’d be interested to know if anything else has happened in her life worth mentioning. How was the pregnancy?

i have a dysregulated child who is slowly improving with age. I’ve talked to lots of professionals and my own thinking is the highly emotionally charged pregnancy might have added to the situation, but otherwise it’s personality. They were a High Needs baby in every way and continued to be a high needs toddler.

@Dreamingofthishouse I think other senses are normal. She's really good at drawing, holding pen/pencils, painting etc. Hunger cues I'm not so sure.... She is always asking for food even after a filling breakfast yet often won't eat her lunch/dinner. Fairly picky but comparable to her peers and will always try new foods before refusing them.

With balance, she does fall over a lot and took her ages to start running. At the park though she seems like other kids in terms of agility. With toilet training we've had issues but mostly all resolved now though she is still in nighttime nappies.

If bath water is too hot when she gets in, she will continue to perceive it as hot even when so much cold water is added that it becomes cold. It's kind of the same the other way round. She also always used to not realise if she was too hot or too cold, though is starting to over the last few months.

Normal pregnancy but difficult delivery. She was an easy baby, and average toddler. Hitting started at about age 3 and big tantrums around then as well. Always had issues saying goodbye to people though, like she can't reach the understanding she will definitely see them again.

Did you do anything to help your child regulate their emotions?

My DS was the same as your DD with bath water and he has got sensory processing disorder. He was the same with food - one of his first words was “OT” - delivered with a filthy stare - at anything more than lukewarm. It’s worth mentioning if you go for an assessment.

Could be something or nothing. Definitely worth a chat with the health visitor I'd say.