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

Twisted a knee?
Dislocated?

Would she react if I put pressure on the knee? Surely she would be in pain 😢 but no response

I think its something serious you know 🥺

She is able to bend her knees and doesnt seem paralysed

What is her understanding like? If you put something yummy in a place where she'd have to walk to get to it and say 'I've put this here for you, DD', would she try to get it?

If you genuinely think she can't walk, I think she does need to be seen.

I’d take her A&E now.

My autistic non verbal brother crawled for a full day in nursery cos he had a stone in his shoe. When my mum picked him up the nursery was confused and she couldn't figure out why til she took him home and took his shoes off.

So check her toes and her feet too. I would take her to be checked, she wont have enjoyed crawling in the rain or wetting herself and that should be enough for Dr's to take seriously

That sounds really difficult and I would definitely take her somewhere with an X-ray facility. Minor injuries might be quicker depending on where you are. I would just say try not to panic (easier said than done, I know) as it may well be something quite minor.

Is she very physical? Does she react to pain in a typical way? (As the parent of an autistic child, I know thresholds and reactions can vary.) Is it likely she could have tripped or fallen without an adult realising and without her reaction making it obvious she’d hurt herself?

Has she let you look at her legs and feet as well as apply pressure? Is there any bruising or swelling? She could have twisted an ankle or knee. Would she understand if you asked her to do certain things, eg kick her foot against your hand?

For what it’s worth, I have a child who has broken a leg twice (different legs, not sure if that makes it better!). The first time, there was no swelling but he refused to walk on it after landing awkwardly at the bottom of a slide. That was a toddler fracture. The second time, there was visible bruising and swelling after he landed awkwardly jumping off something - he then refused to bear any weight on it (but was also able to verbalise). That was a greenstick fracture. He was also crying in pain that time.

It could also be tiredness, perhaps? I have a child a similar age and he’s neurotypical but is exhausted after school.

Good luck, I hope she’s ok.

Ive checked them and they look normal

She has been taking off her shoes and socks a lot recently as well

She has also been weeweeing on the carpet for the last week which is why her wetting herself isnt a surprise, although agree that bum shuffling on the wet pavement is very out of character

She seems off 😳

I would take her to A&E in the morning, they'll be happy to check her out given her dx.

if it's not an injury/medical issue. It's too hard to say how to handle it without knowing her. Sorry.

what have you tried already?

Feet have grown? Check her toes carefully - hair can get wound around them tightly and it's almost transparent. Sensory issues? Will she walk with just socks, or bare feet?

Definitely take her to A&E, it could be an injury or something like irritable hip. It is hard when they can't tell you, so it may be a diagnosis of exclusion. They may wish to do blood tests to rule out a possible infection. Have you tried giving her both paracetamol and ibuprofen to see if that changes her ability to mobilise? If not then try giving that in the morning before you go see if it helps at all.

https://www.nhs.uk/symptoms/hip-pain-children-irritable-hip/

If it is something like hypermobility spectrum disorder which is causing more chronic pain or a behavioural reason then you can see if the local NHS wheelchair service has facility to provide the larger McLaren Major Elite or the Excel Elise that are suitable up to around 8 years old. DS has ASD and we had one when he was younger, the Health Visitor helped us get a referral, although there was a waiting list. You can buy them online, it may help as a temporary measure if this is a phase or she needs physio for her joints to help strengthen them.

Hello, my son is now an adult but I wanted to reply to say that I understand how difficult it is to work out what’s going on when you are not getting any feedback. Does your daughter normally show any awareness of pain? My son didn’t really register pain or heat, cold etc until he was about 12, although he was very verbal, but of course they can’t tell you about something they are not experiencing. I think in your position, I would consider how she normally reacts to pain, if at all. Chances are she has just taken against walking for any number of reasons (pick a card! ..this is how it often felt for me when my son was a child), but it’s definitely worth getting her checked to be certain as my son fractured a bone in his hand and had no sensation of pain at all and no swelling and it was only when we realised he wasn’t using that hand that we went to get him checked at e & e. He was at secondary school when that occurred, but I can think of various times when he had injuries and just wasn’t aware of pain, or even blood, beyond finding it fascinating to look at. Maybe, if you can get in there tomorrow, pop in to see your GP first, assuming they are competent and know your daughter. Also, finally, although your daughter may not speak, I’m sure you’re aware of how much she understands things and how she reacts to your reactions, but I’m sure you are used that aspect of non verbal autism anyway. Good luck, I’m not sure whether it’s better that is not physical iykwim as at least physical cause is likely to be self limiting, whereas if she’s taken against walking then that’s behavioural which as we know takes a lot more effort to deal with!

Just called our local a&e who said the wait time is 4 hours and the best time to come is in the morning

Will take her early tomorrow

Can't believe it

Thank you this was super helpful. I think she has an injury and needs an x-ray

She did fall over a week ago in her bedroom. She cried and then was fine. Walking normally, playing normally.

I'd say that she stayed home on wednesday with me, as i wasnt too well and she'd had a poor night's sleep, and since then she has been not herself. I thought she was tired or bored from being at home.

Ive had similar happen to me where I broke a toe but it didnt cause an issue until a few days later so could be a fracture 🥺

Just saw your last post, it could be UTI. Try if you can to get a sample in a clean pot at home before you go to A&E.

If your ASD child is hyposensitive to pain then they may not display pain cues and can have hidden injuries such as a fracture and still walk on it. DD1 who also has ASD is like this, her pain tolerance is so high she will just pick up a hot pan without flinching.

I'm trying not to freak out now but she really was refusing to walk and just sat in the car park despite my promises of sweeties so that is a red flag

Agree its so hard to know whats up but I feel rubbish that she may have been in pain since wednesday 😢

Thank you for replying - agree that I would like a clear answer as to what it is. I get what you mean, I don't want this to be a life decision that she has made 😅

Okay I think that she isnt registering the pain then 🥺

Okay will do - gonna try tonight, will ply her with fruit shoots and try and pop her on the toilet

Ive got some nurofen so will stick it in her fruit shoot and see x

Ive been meaning to buy one so may have to use the overdraft and bite the bullet tonight

Have checked her toes with my phone flashlight - nothing out of the ordinary

She usually walks fine with socks or barefoot or in her crocs but shes just refusing

I took her for a bit of a walk on Sunday, I wonder whether it was downhill from there for her

I wondered about a UTI also. They’re horribly uncomfortable and would explain excessive weeing.

I tried offering her sweets and nothing

Ive mentioned her favourite thing, swimming, and she still wouldnt walk 🥺

Called them and i'm taking her tomorrow 🥺😳

UTI could explain the disordered pee - and really it could be anything op so I don't want to worry you, but I think when you go in to the hospital it might be worth asking about nerve issues if she seems to have lost bladder control as well as use of her legs.

Then again it could just be a stubborn phase!

Poor lamb in any case.

I have a non verbal asd 8 year old son. Last year he had the flu and he was really poorly (he did have the vaccine). When he started to get over the flu, he stopped being able to walk. Refusing to stand, crawling and in pain. I did take him to the gp's as I was so worried. In the end it was the virus infection affecting his calves as it was muscular. Has she been unwell recently - colds? Virus? Could it be muscular? With breaks there would be bruising and swelling.

I know how stressful it is when an asd child goes to hospitals. Is there an out of hours gp's you can see instead?