Or should we investigate further?

[sleepfortheweek]

I posted about my DDs (nearly 7) inability to cope with big emotions (which lead to horrible meltdowns) not long ago. She's otherwise happy, kind, sociable and clever. I got a lot of responses from parents who could empathise, who had children with ASD/ADHD/Sensory processing disorders.

I'd never thought about it before, but since my post a few things have suddenly become apparent and I'm not sure whether to bring this up or investigate further.

I've listed the main ones below although if I really think about it there's probably my more :

DD becomes quite obsessive over things for weeks/months but then drops them and moves onto something else. This can be a book (she listened to the same audio book for about 7 MONTHS, had a paddy at the thought of changing it - the one she is currently listening to is the same one for about 3 months), music (soundtracks), films, YouTube channels/families and extracurricular activities (there is one she is currently obsessed with and wants to do every night).

She's always struggled with sleep. She's nearly 7 now but still struggles to fall asleep and it's 50/50 whether or not she sleeps all night. She's definitely made huge progress over the last 12 months though. Meltdowns used to be quite commonplace during the night.

DD also chews EVERYTHING. Everything goes in her mouth. Clothing is the big one, her jumper cuffs, taekwondo belt, bag straps etc but also her hair sometimes, small rubber toys, anything really that she can put in there 🙈.

She's also got an obsession with food. She's always hungry, always wants a snack, gets VERY upset about not getting the food she wants etc. Can't bear the thought of not getting food when she wants it.

I've never really thought about these
In much detail and I'm sure there's more that'll come to mind now too.

Not sure if I'm just thinking too much about it though. She's got loads of friends, she's great with her younger Dsis and cousins, loves to be in amongst it all, volunteers for everything going. You get the drift.

Is this just her personality? If she's great in school and these meltdowns that we occasionally (albeit more frequent that I would like!) experience are contained and handled well...what would the benefit be of investigating?

How would you even begin that journey without letting the child know (in the initial stages) 😭

Any advice/experience welcomed x

The benefit would be for dd in being able to understand herself and forgive herself for the things she finds difficult. In not growing up feeling there’s something wrong with her. It’s not just the behaviour you can observe, autism is a whole different neurological operating system and not knowing means she can’t work with it.

Why wouldn’t you let her know? If you really don’t want to talk to her about neurodiversity, you could tell her that you want to find out more about how she learns? That everyone finds some things come easily and other things more difficult, so you want to find out more about how her brain works so you can support her best? She wouldn’t need to know until the actual appointment.

Her school or GP can make a referral to the neurodevelopmental team or whatever service is responsible for assessment in your area.

Thank you.

I guess I'm just worried that there's not actually anything wrong and I'm reading too much into things. There's never been any issue at school, and if I told my friends and family what I was thinking they would be taken aback I think. Maybe she's just highly strung? Maybe she just has loads of passion for certain things? Loads of kids aren't great at sleeping...

I don't know, I just feel if I start something it'll make her feel there's something 'wrong' with her when actually, if nothing comes of it, then it can cause more problems and I've put her through it for nothing.

There's nothing in my area, it would involve a 3 hour drive (which she also has anxiety over due to car sickness) so it would be a big thing.

😢

At the moment some areas are still doing assessments via video link, if she would engage with that.

I’m autistic and wasn’t diagnosed until almost 40. One of my dc has the diagnosis and one other is being referred for assessment and sounds a lot like your dd. My understanding of autism has changed a lot in recent years. So it doesn’t feel like a big deal to me now for dd to be assessed whereas I cried when ds was diagnosed. I now see it as difference rather than deficit.

It’s a lot to get your head around and I’m still learning. If your dd doesn’t need extra support to cope in school etc the good thing is that there’s no urgency and you have time to read about it and get your head around it. 💐

The things you mention could be something or nothing. I know when I was a child - even into my teens - I had obsessive interests a lot, for example would rewatch the same film daily or even several times a day - I think that's quite usual among children.

I'd begin investigating OP. Differences can become more apparent as children grow older and their struggles can increase.

List for Gp:
sensory. (Clearly oral sensory seeking)
What about lights or noise?
Light touch, temperature, ,( bathwater) does she lean on you a lot, balance, coordination?

Routine:
Same book every night

Always eats her food in the same order?

Social:
Is she too friendly with everyone.
Look for specifics to any difficulties.
Does she have fixed games?
Does she need to be the boss?

Hi OP, I think def worth investigating given your list but you can do that with her.

To add to a PP's list of the routine and sensory points, the food issues could be a combination of sensory and interoception (ie efficiency of messaging between brain and body so eg she might not be able to tell easily when she's full, can be similar issues not recognising when a person's too hot or too cold).

My youngest got his autism diagnosis at 2 but eldest got his at 9 once we were finally sure he was likely to get the diagnosis, we thought he'd probably come up borderline until then. He really struggles with anxiety so we were able to talk to him about different brains being wired differently and how his autism means there are things he finds harder than other people do - but also makes some things easier for him (hyper focus, maths, problem solving etc). He was surprisingly fine when we first introduced the idea to him

If you want to read a bit more without getting in too deep, this book is v good and written by autistic authors so is empathetic and positive.

I haven't read your other post, bit this sounds EXACTLY like me as a child! While I did have an anxiety disorder, this didn't emerge until later so I think these things were just my personality.

Thank you everyone.

In terms of sensory, there isn't anything glaringly obvious. She's ok with clothes, isn't sensitive to temperatures, isn't funny about textures of food. She will get very upset if she doesn't get to wear the clothes she wants to - but that's perhaps applicable to many DC her age.

There's definitely no problems at school. I've had every nursery practitioner and teacher telling me how helpful, kind and bright she is. Two have said they wished they had a classroom full of DDs.

Tiredness is a huge trigger for meltdowns. She's been very emotional this morning about it EVERYTHING. She had a club on till 8pm though last night, so she's tired. She absolutely loves this club though and is very good at it so would be devastated If I stopped her going.

Routines aren't obvious, again. She doesn't do things in a particular sequence. She can get very upset/meltdown if we have to do something she didn't know about (pop to the shop after school) but again, that could be anything?!

It's so hard 😭. I need to look into how to tell with her personality, regardless. I'm ge really a calm person snd have a lot of tolerance but honestly sometimes patience weans and I'm guilty of resorting to shouting/threats occasionally.

I also feel guilty for DD2 sometimes who is almost shadowed by DD1s outbursts (she's a very calm child and just shrugs off her sisters behaviour - she's 4)

OP you've got quite a long list of potential indicators there (and chewing = sensory and behaving perfectly at school but melting down / being exhausted afterwards and not coping with unexpected changes are pretty standard for autistic people who mask - take a look at spoon theory). It may be all new and scary but do keep making your list of these sorts of things and please do consider investigating as it can take 2+ years to get even a diagnosis, let alone support.

Ann Memmott is an autistic advocate and is brilliant, her blog has lots of really insightful posts - here's her take on spoon theory:

annsautism.blogspot.com/2018/02/autism-and-spoon-theory.html?m=1

Thank you so much. That's really helpful.

I had a quick convo with DH about it last night but we are going to discuss it further tonight.

The thing that is putting me off is that she has absolutely no social indicators. She loves social situations, isn't afraid to join new groups where she doesn't know anyone, has a good group of friends, loves chatting to family on the phone etc.....

I'm worried that I'm just struggling with her outbursts and unreasonable behaviour so now I'm trying to find reason for it - if that makes sense?

This morning was a disaster, however she was late in bed last night due to a club she has not finishing till 8.30pm. I explained to her that she's feeling the way she is because she's tired, and that maybe be would have to skip the late night clubs, which obviously didn't go down well 🙄🙄🙄. She cried about her clothes, her hair, getting her teeth brushed, not wanting to go to school......DH was away at 5am this morning so it was a tough morning trying to get them organised snd I'm now sat at work full of adrenaline and on the verge of tears because I know I could have/should have handled things better 😭😭😭😭😭😭