Autistic dd flat out refusing to walk

[Concernfordd1]

Name changed as outing

My dd, 6, with autism, has suddenly decided that she will no longer be walking

She is non verbal so can't tell me why

I don't know whether she is in pain or has broken a limb, it doesnt seem like it

I've applied slight pressure to her legs and she doesnt react

Today she crawled on the pavement in the rain, and sat in Sainsbury's car park until I carried her to the car. Then she has just wet herself instead of going to the toilet

Whats going on?

I am thinking to take her to a&e tomorrow and then send her to school in her buggy (which by now will be too small but she might just fit)

Has anyone experienced this? If so please help 🤷‍♀️🤷‍♀️ i'm getting very worried

So i'm in a&e after a very poor night's sleep calling myself the worst mum ever

We get into the room with a lovely nurse

Dd decides to stand and jump

She is now rolling around on the floor playing with her teddy bears but has successfully managed to walk several steps away from the nurse when she tried to examine her

Would you push for an x-ray in my position - i am waiting to see the doctor

Gosh what a nightmare for you!
Does she go to mainstream or special school? Could she be copying the movements of children she’s seen there?
I’d have the X-ray for peace of mind and make it clear to the dr that the behaviour is very out of character

Could she have a hair wrapped round a toe, or is that just babies?

Hey op. My non verbal ds did this to me a few months ago but he was limping. As soon as we got to A&E he was running about! Always best to get checked. Id let the doctor examine her and let them decide. Also I've just bought ds a disability buggy from amazon. Its brilliant. We don't use it daily but helps keep him safe when out and about. I think it was £300

My ASD DD was walking on a broken hip. They just don’t register pain like NT people. When pain is really bad she starts vomiting. We know the cues now but when she was 6 we had no clue. Better to be safe than sorry OP. Hope you get sorted soon x

Thank you for sharing this it's very helpful - will definitely push for the x-ray then

Bless your dd, its so hard when they can't verbalise whats wrong 🥺 xx

Yes ive seen the one i want but hoping to wait until payday. The mobiquip xl?

Dd's current buggy is filthy omg, having been in storage so will have to clean it for back to school on monday. Shes so tall as well, for 6

Thank you - bless him, i did just think it was something she enjoyed doing 😄 but the wetting herself worries me, as does the sitting in the rain

Ive had a look but no hair 😕

She goes to a special needs class

That was my thinking, shes seen it somewhere and it looks like fun 😄, but agree that i will ask for an x-ray if poss as the sitting in the rain is a lot

It's so worrying when they can't tell you what's wrong. I hope you get to the bottom of it soon OP. Nothing at all to feel like the worst mum for, you're just trying to do your best for your child. Also it's possible the terror of the nurse examining her was stronger than whatever was stopping her from wanting to walk. What a stressful time for you.

I asked the doctor for an x-ray but she said no as dd is showing zero signs of infection or pain in her limbs

I said that she doesnt express pain like us but she said there would be other signs

Tbh dd is happy and playing so I cant really argue any more

It seems this is a fun phase for her 😭 and now i have to get a disability buggy

I was hoping to take her on holiday as well so not sure how that will work 😪😪

Thanks everyone for your advice and kindness. I am so embarrassed to have caused a drama

She will see a doctor next week to see if there are any other issues

I think i will leave it another week and bring her back if no improvement I guess 🤷‍♀️

This, the visit with the nurse had her jump right up!

Please don't be embarrassed. Parenting in tough for all of us, and even more so with a non-verbal child. My daughter is almost certainly autistic, but totally verbal. But she definitely doesn't feel things or express them in the way other kids do, and it becomes a guessing game. For bladder infections, you can buy the dipsticks the GP uses via Amazon. Obviously if you get a positive test it still needs to go off to the lab for culture but we found it really helpful to have them in the house when her bladder control was all over the place (sometimes infection, sometimes not)

Now i'm home i am rethinking everything. The doctor was a bit weird and was implying that I was leaving dd to hurt her head, when she was climbing down from the bed. She flat out said 'no' to my request for an xray. Plus was asking about who else was at home with us

Hmm

Anyway will take her back next week if no positive improvement and will stand my ground and insist. xx

Thank you 🥺

Will definitely get these bladder infection sticks as it could help

My youngest did this last year, just woke up one day refusing to weight bare, but no area specific pain

Took him to a&e and they x rayed and took some bloods, they couldn't find anything so put it down to a post viral thing (it had a name but I can't remember it), as he'd had a cold the week before, he was fine the next day!

It’s really hard navigating parenting with a non-verbal child. We had a wonderful GP when our child was younger who trusted us when we said she wastn’t right and often sent us to A&E for checking when other GPs would have left things. Unfortunately he retired some time ago so we often have to be THAT parent insisting on help when we know something is wrong but DC is not presenting normally. Trust your gut OP and write down a timeline of symptoms in case you need to take it with you if you are still concerned a week or
so down the line.
Another tip - see if your local NHS trust has a vulnerable in-patient scheme that puts a marker on your child’s records. It can sometimes help flag up to doctors early door your child’s additional needs.

Do her shoes still fit? Or a change from. Summer to winter shoes feeling differnt

For what it’s worth I had a hairline fracture in my metartasal and being a daft adult, thought it was a trapped nerve and didn’t want to bother GP so literally dragged my foot around in pain for about a week and a half until I saw swelling and then was immediately diagnosed by GP. So the external symptoms don’t appear so readily as one may think. I hope all goes well for DD.

My ds did vey similar when he was about 4, refusing to walk or limping. He is verbal though and said his knee hurt. I carried him into A&E where he proceeded to run up and down the corridor for the doctor.
They diagnosed him with something called transient synovitis, which is where a viral infection inflames the hip joint after they’ve had a cold or something. If he had been a sitting still for a while it was more painful and stiff, hence I had to carry him in from the car. They said that children are bad at identifying where pain is which is why he said his knee hurt. He was fine after a few days.

Oh gawd, I’m laughing as this is such a parent experience thing (regardless of whether your kid is disabled or not). I have yet to read on, but I’m so glad that she can at least move when she decides she wants to! Deep breaths as this too shall pass!

@Concernfordd1 They will always ask who’s at home with you if there’s a suspected injury. They’re just looking out for your DD.

When were her feet last measured?

I worked with non verbal autistic children and dropping was common. It's a form of refusal, when you can't say no. My friends daughter did this as we left Legoland and was like a dead weight, trying to get her out to the car.

With the wetting I would also want to rule out a bladder infection just in case - it sounds like they didn’t do this at A&E. UTIs can affect people in strange ways such as older people becoming aggressive or people with dementia having an increase in dementia symptoms. I used to get bad UTIs and it hurt to walk but the pain wasn’t actually in my legs. I’ve used the dipsticks from Amazon as a PP suggested and they work well