Concerns about 4 year old DS behaviour

[ReySky]

Apologies in advance if this is long. I'm sure I've posted about this previously but can't find thread and there's been some recent developments.

DS1 is 4 and had a pre-assessment with a Health Visitor last August and he scored above their threshold on questionnaire things.
She was quite taken aback by his behaviour when she visited us at home. The entire duration of her stay, around 90 minutes, he was jumping, running, shouting, making noises, flapping his hands etc.

I have had concerns about his behaviour for a very long time. As a newborn he would regularly stay awake for 16+ hours. People commented that he moved constantly and he looked like he had electricity running through him. He was a very unhappy baby, I remember a Health Visitor commenting that she would not be able to enjoy a baby like him!

He is extremely hyperactive and makes noise constantly. I really do mean constantly, from the second he wakes up. Shouting, making random noises, humming loudly, fake hysterical laughter etc. He never ever sits still. Mealtimes involve him running around in circles. If I put the TV on for him he does handstands constantly and jumps from the sofa to coffee table, no matter how many times I've explained why it's dangerous. Even if he falls and cries he just does it again. Every single day when I take him up for his bath he jumps on his bed until the bath has finished running. He flaps his hands, spins round etc. Hates loud noises, if I go in a public toilet he will start panicking begging me not to use hand drier. Has cried before in supermarkets when they use the tannoy, hates vacuum cleaner etc. Has very specific set ways things should be done, for example we live in a cul-de-sac and if I go to cross road he screams and cries on the floor saying no I have to walk round the pavement. His toy cars have to be lined up a certain way. Has to be first when going up or downstairs or he screams and cries. He is grumpy from second he wakes up, I am normally downstairs with DS2 as he gets up about 4am, and when I hear DS1 wake up my heart starts racing, and he'll instantly start screaming "get upstairs now, carry me downstairs now". Very fussy with food although I know that can be common at this age. I'm sure there's a lot more but I'm typing this in between supervising both boys and cooking dinner etc.

Starting a new nursery next week, only two days a week as that's all they have space for - was at one end of last year for a few months and it would take almost an hour every morning to get him from car through the gates, he'd scream and cry entire time, then the days he wasn't there he'd cry begging me not to send him the next day, it was a long drive and they weren't interested in engaging with me and just said "yeah he's probably winding you up".

I take him out at least once every day, often more, to places like parks, woods, farms, castles, soft play, play groups, nature reserves etc, make sure he gets plenty of fresh air and exercise. I set up baking and crafts but he wanders off after about one minute. It is very hard to get him to sleep, I lie with him for ages and if I try to leave room to go to toilet or anything he will just follow me and start shouting. I make sure every single night he and I have one to one time after I've put DS2 to bed.

Shopping with him is very tricky, every single time without fail it results in him screaming and crying on floor, people coming to intervene etc. I now do online shops or have to buy things at petrol station if I run out of something so he can stay in car while I run in and grab something as I can't bear to take him with me - tried it yesterday when ran out of nappies as online shop didn't have any, and he was kicking off so much that security guard came over to see what was going on.

It goes without saying, hopefully, that I love him to bits, he can be the sweetest little boy, is funny and has a brilliant imagination, but he is extremely hard work. When we visit family they get very fed up quite quickly as he runs up and down their house the whole time, throwing things round etc. Last year we stayed with my mum and sister briefly due to my exDH and I separating and issues with domestic abuse. When we were there, my sister would be in tears virtually every day and ended up saying she'd have to book a hotel as she couldn't hack him anymore. The neighbours complained about his noise. My mum would come home from work and go straight to her bedroom without eating as she couldn't face him. That sounds horrible typing it, and they adore him too, give him lots of attention, affection, make sure they always have his favourite food in etc, I don't want it to sound as though they dislike him. He's just very intense. What breaks my heart is even his father finds him hard to cope with, I won't derail the thread by going on about him too much but he sees DC at my home once or twice a week, and will often say the noise is making him feel manic / DS1 is in a "weird mood" and will leave. I feel like I am completely on my own. I have chronic illnesses and some unresolved health issues and am very sleep deprived, and finding things really hard.

Anyway, he had his Paediatrician assessment last week. I instantly felt like she wasn't interested in listening to me. She said as he has good speech and communication he's not autistic, he's just immature and probably controlling as I'm a single parent and he thinks he's an adult. I'm at a loss about what to do now. He starts school in September and it is making me very anxious, although he can be quite good at masking his behaviour around strangers sometimes.

Sorry for long post but I'd appreciate any insight and advice, even if it's to tell me he sounds completely normal and I'm overreacting. Thank you.

Hi @ReySky , sorry things are so difficult for you. Quite a few things you’ve said remind me of my DD, she’s 3.5yo and awaiting an autism assessment but is also non-verbal. She also constantly jumps, runs and spins and it seems like your son is also a sensory-seeker.

I also order groceries online and go to the petrol station if we’ve run out of milk rather than taking her to the supermarket with me. I also have to lie with her till she falls asleep.

From everything you’ve said, it does sound like autism/ADHD and it’s a shame the paediatrician was dismissive and the previous nursery were not helpful or supportive.

Have you spoken to the new nursery/SENCO about your concerns? My DD started nursery a few months ago and they’ve been really good at getting different things in place to support her.

It sounds like he’d maybe need an EHCP at school and nursery can help get the ball rolling with that, although it most likely won’t be in place for September.

He would probably also benefit from an assessment by a sensory trained occupational therapist to help unpick his sensory profile and get a sensory diet in place to meet his sensory needs and help him regulate. Not sure if your area lets parents self-refer or you could go private but it’s quite expensive.

We also struggle with visiting family and your world becomes quite small. It’s intense and then add in sleep deprivation plus younger DC and it can all feel too much. Hope things get easier for you soon.

Thanks so much for your reply and the solidarity.

I have not had much chance to speak to his new nursery, although it is attached to the school he will be starting in September and I know they have a good SEN department. I did explain some of his quirks to the nursery manager, though.

I will have a look at an occupational therapist, thanks for the suggestion.

I hope you manage to get somewhere with your daughter's assessment too.

Whilst waiting for 'the professionals" I would just do a lot of reading about strategies for parenting autistic sensory seeking pre schoolers and start implementing them to see if it helps.

It's not my area at all but I bet there are tonnes of great Facebook groups to learn from.

Sounds like my DS.

He has started school now and doing well, calmed down (he listens to teachers more than me so actually does as he's told)

We also had pretty much the same assessment outcome as your son.

Your nursery will pick up on it straight away and there's a lot of referrals they can do.
We had occ therapy, salt, education psychologist. Applied for EHCP but turned down so we are trying again now with his school.

Does he have ear defenders? He may need them for nursery as will be very noisy.

This sounds so tough OP. I would also take into account how much change is happening in his little world - a new sibling; separation of his parents; staying with aunt and granny; starting nursery then changing nursery. That’s a lot to process.

What do you do when he is zooming around at home - how do you encourage him to slow down, make less noise, etc? What eventually causes him to stop - is it simply exhaustion? And then what happens next?

I would reduce the variety of activities in general and jus make life very “small” and ordinary for now. it sounds like he really needs predictability, and I would definitely pander to that because it makes him feel secure. My ds was like this when a toddler, he would go bonkers if I walked the school run (for older dc) a different way than normal. He liked things “just so”. Which was fine. A few friends said to me “oh do you think he’s autistic…” but no, he isn’t. He just needed that comfort of knowing exactly what was going to happen next, and was too immature to tolerate the idea of something happening he didn’t like. My ds has mostly grown out of this and I think it’s common amongst loads of NT kids. It did no harm to simply let him have his way, but every now and then I’d insist we take a different path with a good reason (“this path is where daddy saw the squirrels last week” or “this path takes us to the postbox and you can post my letter”). Eventually the tantrums stopped.

Don’t worry about castles and nature trails and baking. Stick to simple things. Set up the day carefully so if you know it’s supermarket in the afternoon, he has a really relaxed morning of play and colouring (for example).

Being outdoors in fresh air is fabulous but also a lot of sensory input - smells, sounds, the weather, etc. So keep that simple too - a regular walk or bike ride to a local play area he likes.

Just to say the hand drier hating, is actually fear of them due to the noise, and is normal for small kids.

Most, including ND kids, grow out of it even if they refuse to dry their own hands under one due to other sensory issues.

Hi @ReySky, your post is so detailed which is excellent. It really does sound to me like your DS had more going on that just being “immature” as the paediatrician so helpfully put it.

I have 4 DS and the youngest has diagnosed and medicated ADHD. He’s 9. It was very obvious from an early age that he was different from his brothers. That was the only thing that gave any weight to my concerns with with health professionals.

You already sound pretty clued up and the fact you’re posting here shows that you’re trusting your instincts. I KNEW my DS had ADHD even when I felt I was bashing my head against a brick wall with the school, GP, SENCo etc etc.

You must be exhausted as you’re doing pretty much all of this yourself but knowledge really is power. Read up as much as you can on autism, ADHD etc. If you’re on Facebook check out your local SEN pages as they can be invaluable. There may also be SEN playgroups where you’ll find a wealth of information and hopefully, support.

My DS also hates loud noises like motorbikes, sirens, hand driers etc. Headphones really do help.

BEST of luck: you’re not alone

I have a slightly older ASD/ADHD boy and this sounds so much like him, so so much. He is late primary school age, with medication to sleep and ADHD medication and everyone’s lives are so much better. He’s doing well at school, he sleeps at night, he isn’t coming home angry and overwhelmed anymore. He’s still hard work (the bloody whooping noises at 6am can be a bit much at the weekend) but on the whole our lives have changed with medication.

We are still on the NHS waiting lists, we went for a private diagnosis to help him sooner.

Bike/balance bike and scooter help.
We were on a walk once and DS totally KO’d his bike, flew down a hill, fell off, rolled a lot and splatted, got up, brushed himself off and carried on.

Queue father of NT child watching this unfold telling his DS he should be more like ours 🤣

He definitely sounds Autistic/ADHD. It's very common for us mum's to also have chronic illnesses in this situation. My son is just starting secondary. The intensity has and often does calm down significantly. He can still be a bit hyper but with age most calm alot and new things come into play as opposed to the hyperactivity.

I'm sad to say I believe many will fob you off and blame it on the home life etc. It isn't. This will likely have ramped certain things up behaviour wise but I almost guarantee you this is not the cause and neurodivergence is the reason. Most doctors will be clueless. Even nursery / schools are I'm the habit of gaslighting and fobbing off. We had all this. I had to ask my mum and ex to pay for a private assessment. It has been really helpful for me to know and my son really understands himself and generally embraces it. Waiting lists on the NHS are about 3-4 years. If you can somehow get the money for an assessment it will be the best thing for all of you.

It's not a full solution by any means but you could try getting a sensory swing for your DS. Mine loves his, it's a way for him to be constantly in motion without destroying the sofa.

Hi OP, I have no specialist knowledge, but I have a just-turned 5yo boy who has always been very active and energetic, to the point where it is often commented on by others. I don’t want to sound blunt, so please take this in the kindest possible way, as I am genuinely trying to answer your question… no, IME this is not the typical behaviour of any of the 4 year olds I know. I think you should trust your gut on this one and keep pushing and advocating for your DC until someone takes you seriously. I’m sorry that you have to do that.

In your shoes, I would be videoing the behaviour and keeping a log in my phone of a day, eg just noting times and what was happening so that I could go with evidence for a second opinion. I’d also ask for an early meeting with the new nursery manager to ask for their support in exploring further help, both for yourself in terms of managing the behaviour and for your son to put some coping strategies in place.

Wishing you all the best and sending unmumsnetty hugs.

I mean obviously we can’t diagnose him but every parent of a kid who is Autistic and ADHD is going to be nodding their head along about how familiar this sounds.

Sorry the paediatrician was so shit and ill informed. At next appointment go armed with all your evidence. I can’t honestly believe the paediatricians response given all you’ve said. Keep a journal, record everything, take videos if needed. You need that diagnosis really.

practical help:

• apply for DLA and use the Cerebra guide (you don’t need a diagnose to apply)
• sensory activities (my daughter is so much more regulated following sensory play but I do enable her to be very messy)
• At home climbing equipment. Try a gym1 indoor playground or anything similar. My daughter is never still but a lot happier climbing around semi safely.

follow ND affirming people of social media. NeuroWild is great and you will learn a lot from her.

lastly you will be ok. It’s hard, so so hard, but the best people I know are the ND ones!

I could have written most of this about DS1 who has just turned 4. Maybe slightly less screaming and crying but so much sensory need, no attention span, extremely high energy, extremely demanding, emotionally volatile and a very tricky baby. Family won’t humour having him as you just can’t hold a proper conversation with him without him screaming, making silly noises, invading personal space or wandering off. DH and I parent that child to within an inch of his life and he is still like this. We ‘parent’ so much more than others, so I really think the issue is him, not us.

We are seeing a private OT in a few weeks to try and put some coping strategies into place. He’s going to the same school as his current nursery who are aware and thankfully, have been great. I will be very surprised if we don’t get an AuDHD diagnosis in the future. But we’ve had a lot of pushback from armchair relatives and the HV because HiS sPeEcH iS gReAt