Autism, Sleep issue or something else?

Hi, I just wanted to comment to say I could have written your post myself. I haven't read all of the comments but I've read all of your replies and my DD 5 is exactly the same. Ok top of what you've mentioned she will not sleep past 5.30 am and rarely has since a baby even though we try all of the suggestions.

I wish I could suggest anything in way of support but we struggle daily to manage our DD although she is very sweet and bright as you say about your own DD. Sending solidarity.

I would love an update of you do get anywhere with referrals as we are just not taken seriously due to DD being intelligent and managing well enough in school.

T

Following on from the person who mentioned sleep apnoea, I’d also recommend discussing with GP in terms of blood test for nutritional deficiencies - Vitamin D and Iron in particular (I’m a dietitian). Esp if her diet is a bit limited in terms of iron sources and/or she hasn’t been taking Vit D supplementation. Deficiencies of either can impact mood and energy levels. Very important to rule out physical causes of the issues you’ve mentioned alongside the other avenues you’re exploring.

I work in a school myself and heard about it there. If you google local play therapists you’ll find one, or perhaps school could point you in the right direction. I contacted them myself and arranged

That drive home will be good for her, I have no doubt about it! Blast some music she likes or turn off the music, you’ll know her best.

the movement I suggested could also be done after getting in instead of before getting home. You could have a look at doing some sensory circuits to incorporate things when home? All to do with feel:touch that as you discover likes/dislikes can be adjusted.

being unpredictable is very normal! A child not on a spectrum can be the exact same. A child I know holds in all day and then F’s and blinds all the way home to the parent as an outlet to what’s been held in all day (ADHD) all whilst cycling… movement and release is the way I see it. Doesn’t say a bad word to a single other person but it works for them! Wouldn’t have believed it if I hadn’t witnessed and they were horrified I’d heard!

In relation to why you have still seen dysregulation in the holidays, DD probably has a period of decompression at the start of the holidays and a period of anticipation building towards the end. This could very well be a longer period than you think.

Then you add in a myriad of things such as a change of routine, potentially a lack of routine/more unstructured time (for this reason we have quite a structure home life. My DSs can’t cope without that), potentially overstimulating activities/holidays/days out, potentially different sensory overwhelm, seeing different people, different environments…

How is DD’s eating?

Does DD chew things during the day or is it only at night?

She could still be masking in the holidays. All sorts of situations can be overwhelming for them.
You mentioned she’s “Easily overwhelmed by noisy/busy places. Hates hand-dryers, struggles with family theatre shows etc or kids discos.”
Day to day life that we take for granted can still be too much causing them to mask without us realising.
I believe I’m ND myself. The more I’ve looked into it for my son, the more I recognise in myself.
I enjoy family or friend get togethers, but after so long I just sort of zone out as it becomes overwhelming for me.
When I get home from work I am exhausted and need alone time for about an hour before I can make my brain focus on the next thing I need to do, such as prepare dinner.

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

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.

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 🙂

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

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.

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?

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?

All sounds quite normal to me Op.

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

Do you have to go in?

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

and in the morning grumpy!