Autism, Sleep issue or something else?

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My DD is 5 and I have always had the feeling there is ‘something else’ going on, but after 5 years I still don’t know what it is/how to help her.

These are the things I notice which seem different to her peers:

She lacks ‘staying power’ and is often exhausted by being out for just a few hours. Sleeps generally well but still chews a comforter to get to sleep.

Very strong willed and tries to direct us a lot.

Struggles with emotional regulation. Can be quite sensible/reasonable but can absolutely flip out when tired/hungry/needs a wee. Struggles to recognise own internal cues eg hungry/need a wee. Often gets angry instead of sad. Used to hit me a lot but now mainly just screams/seems to lose control.

Struggles with transitions eg end of school day, pick up from holiday club etc.

Easily overwhelmed by noisy/busy places. Hates hand-dryers, struggles with family theatre shows etc or kids discos.

Very articulate and can be quite pedantic/corrects adults etc.

Finds it hard to play independently but then can sometimes hyper focus on something for 30 mins plus on her own terms (quite rarely).

Very sensitive to sugar and tv.

Does anyone else have a child like this? I keep wondering about ASD but then also wonder if it’s more of a sleep issue that’s having a knock on effect? She’s also very clever, funny and creative and has many other lovely qualities. Just find it hard seeing her struggle with things many other children take in their stride. Any advice/thoughts welcome!

She sounds like my DS who is AuDHD.

Have her teachers raised any concerns within school?
If not, ask for a meeting with the schools senco, tell her your concerns.

Ear defenders for busy noisey places. My DS wears them in school also.
chewy necklace may be useful for her also.

how is she socially?

Thanks for replying and that’s helpful to know. Teachers say she’s fine at school - very helpful, keen to tidy up/help others. However we had a very rocky start in terms of transitions - often clings on to me on the way in and often exploded after school for most of Autumn/Spring term of reception. She’s very social and loves meeting up with school friends. Not so great at approaching new children/knowing how to make a new friend but that could just be age?

Should also mention I have met with Senco who did a short observation- she said a few ‘unusual traits’ but nothing that would impact her learning. She has agreed we can pursue ASD assessment though although I keep wondering if this is the right route to pursue. Does your daughter get very tired too?

Sorry your son I meant!

Look up the coke bottle effect.
It is possible she is masking at school which is then resulting in the built up stress releasing once home.

Yes could be age.
ASD does project differently in girls.
i do think it’s worth exploring with school and explain what is happening at home.

I can’t see any “sleep issues”?

Sorry should have made that clearer - I’m wondering if it’s because she still chews the comforter/and is maybe having to re-settle with it during the night so perhaps not getting a good sleep. She’s quite a light sleeper and never seems to wake up refreshed and is tired all day so was just a thought.

Thank you

Just going in to year 1?
mine were vey tired by the end of the day, exhausted!

and in the morning grumpy!

Do you have to go in?

Yes just going into Year 1. Don’t usually have to go in but occasionally. I can sometime hear her yawning/ruffling around a bit a few hours after she goes to sleep.

All sounds quite normal to me Op.

Just keep an eye on it and get her in a nice bedtime routine

Thanks, appreciate your perspective

Although some of what you describe can be within the normal range for 5y/o DC, if the SENCO is supportive of a referral for an ASD assessment, I would accept it.

The coke bottle effect signifies unmet needs at school. If school life was easier, home life would improve too. Request another meeting with the SENCO. They should be providing support. You say the teachers say DD is ‘fine in school’ but there will be signs they just aren’t seeing or seeing but not recognising for what they are.

If DD struggles at the end of the school day, ask if you can collect 5/10 mins early or late &/or from a quieter entrance.

Does DD use ear defenders?

Thanks, @roaringdragon, I think I will accept the assessment (although I feel like this has been mainly driven by me, the senco seemed fairly ambivalent to be honest). I definitely think school must be stressful for her in some way, although she can also have tantrums/meltdowns and be difficult to handle at home. I sometimes feel like home life is only smoother because I’m walking on eggshells/trying to manage her reactions a lot. Good idea about early/late collection from school - I’ll suggest that. She has ear defenders but doesn’t currently use them at school - only if we’re out somewhere particularly noisy eg cinema. Really helpful to have some practical tips that might help. I think ASD could be a possibility although I’m still none the wiser on why she’s constantly so tired even when at home.

How good is DD talking about emotions and the causes of her emotions? Would you be able to talk through the school day to see which points are the hardest for her? Some find having a map of the school and asking DC to colour it in green, orange/yellow or red works.

I would see if DD will wear the ear defenders at school.

If DD struggles with drop off, you can ask to do the same in the morning too. Drop off 5/10 mins early &/or at a quieter entrance.

How does DD cope during break/lunchtime, both on the playground and when eating lunch? What about assemblies? What about sitting on the carpet in class?

She’s probably tired due to masking all of the time. It can be exhausting trying to act how people expect all day and cover up your true feelings.
My DS is awaiting an ADHD and Autism assessment. He’s a bit older and managed to explain that he’s only his real self at home. Out of home he covers up the real him.
He’s always come home exhausted and often has meltdowns after school.

I could have written this about my daughter. I am perusing the possibility that she is ADHD. She definitely masks at school then explodes at home. She had play therapy for 6 months as I thought it was my fault due to her dad and I separating. That has helped immeasurably in the way of coping strategies as that she is able to control her outbursts a bit more eg no longer tries to pull the curtains off the windows etc. She cannot tolerate sugar and thrives on routine

Thanks. Some good ideas for me to consider. She’s actually really good at identifying emotions. You can’t talk to her in the moment but afterwards if approached carefully she’ll explain ‘I was frustrated because…’ To be honest I’m not sure how she copes at break/lunch as she doesn’t talk much about this. She usually says she had a nice day and tells me about activities she’s done in class but then often unravels when we get home.

I have considered this and it makes sense during term time but she’s also been like this quite a lot during the holidays which is why I’m wondering if there’s something else I’m missing…

Sorry to hear your DD is experiencing some similar difficulties. I’m glad the play therapy has been helpful though. Do you mind me asking how you found out about it/accessed it? I haven’t seen anything like that advertised before.

I’d snap the hand off at the referral. If anything like where I am you’ll wait a very long time.

you mention lots that I recognise in my own, at my place of work with many many that would not have the support you are trying to give your daughter.

the tiredness I can’t comment on other than masking! Girls do present very differently (my own did). Holidays and tiredness could be that she’s no longer in a set routine (school/activities etc).

I think a lot could be down to new school year and her age however I’d have said the same about my own and years down the line I felt so stupid I’d missed her requiring the help she needed and she was in fact “masking/conforming”.

meltdowns can be present in any child, it’s the dealing with and what can be done to minimise them. Do you walk home from school? Could you snack on route home? Movement is also very good for children, things like skipping, hopping and running if you can incorporate it in to your “getting home” before actually getting home you may notice a difference in “coke bottle effect” that many mention. We do this with children when they arrive at school too, movement break before expecting them to sit/listen/do work. And you absolutely can suggest an earlier collection though you may find that upsets her or makes her feel different so it may not be the right “thing” for her. But lots and lots of options for you to consider 🙂

Could also be ADHD. Everything you mentioned can apply there too.
I am ADHD, (late diagnosed) my son is on the waitlist for assessment (quite high masking for a boy cos he is clever and quite sensitive, doesn't like getting in trouble so holds it together as best he can, until he can't (changes to the school day or playtime usually)
I also suspect now that my daughter is too, (she is 7) but again clever and high masking and she definitely has the perfectionism trait! So I don't think she will ever get picked up for referral at school! She is very like my sister in sooooo many ways (who is also for sure ADHD, but hasn't chosen to get diagnosed as like me, only realised as an adult) who was always top of the class ..got a first and a master.

These things can look quite different in academic girls and so many get missed, so definitely jump on that referral to get on the waiting list! Both I and his teacher were confident with my son not long into year 2, took a year to get the SENCO to put a referral in (cos priority goes to kids falling behind academically) now about to start year 5 and still waiting, but thankfully at a good school with supportive teachers.

Thanks for your kind and thoughtful reply and interesting to hear there are behaviours that you recognise from your own experiences. I always bring a snack and drink to school and this makes some difference along with not asking her too many questions. Unfortunately we drive as school is quite far away but I could try parking a bit further away so she has the chance for a run/skip before getting in the car. I usually do the opposite as she can be quite unpredictable when she comes out/can try to run off from me but maybe if she knew she had the chance for a proper walk/run to the car that might help. Thanks for all the ideas, appreciate everyone’s help and experiences

It’s interesting you’ve referred a few times to sleep issues. Not waking up refreshed, struggling with concentration and tiring much quicker than friends could all be signs of sleep apnoea.

There’s research that has come out more recently which suggests that if a child is showing possible signs of ADHD that we should first be ruling out any issues with the airway in the first instance, as untreated sleep apnoea can lead to ADHD-like symptoms.

Does she wake frequently, startle awake, mouth breathe, snore, gasp in her sleep or have paused in her breathing during sleep? Does she I’ve a history of enlarged tonsils or adenoids? If any of this does sound familiar it would be worth getting checked out