Hypotonia in ASD children

[Shufflingby]

Hello. Does anyone’s daughter have hypotonia (low muscle tone)?

My daughter has no core strength, very rounded shoulders, and weakness in her fingers especially - so much so that she can’t safely carry a cup of tea using the handle. She is also dyspraxic.

I wonder whether anyone has found support for their daughter - such as OT - through the NHS for this issue? Thanks ☺️

Definitely look at an OT and physio via the NHS.

Does DD have an EHCP? If so, OT and physio can be included in there to a greater extent than what DC typically receive via the NHS.

OT can also look at any adjustments/equipment that are needed at home.

Thank you. She doesn’t have an EHCP as she was diagnosed too late - although MH issues before that.

We’ve seen rheumatologist for pain, and she also has bladder issues (but wouldn’t fill in the diary - she was 16 at the time).

She minimises and masks everything, but she’s about to go off to Uni, and I’d like to get her onto some pathway with support beforehand.

She is very severely dyspraxic as I mentioned, can’t ride a bike, is always spilling things, hurting herself, and can’t stand for any period of time before it gets painful.

I was thinking of Erlhes Danlos (spelling?), as she also has very smooth skin and other symptoms although not hyper mobility. Apparently it’s co-occurring with ASC?

An OT assessment will definitely help. Have a look at your council’s aids and adaptations team (or whatever they call themselves). That can help will functional aids to help her around the house. A physio assessment is worth looking at too.

Has DD applied for DSA?

In case it is relevant in the future for other DC or friends, you don’t need a diagnosis for an EHCP.

EDS can be a co-morbidity, would DD consider a referral to explore that?

That’s helpful. She already has an autism diagnosis, but it e just chatted to her about it, and apparently she is somewhat hyper mobile - her hips are very loose. Lotus position easily with no pain and leg up to the shoulder sideways. I had no idea she could do that and it looks very odd! Is this usual?

I don’t think it is exceptionally rare, particularly in teen girls, but coupled with the other aspects of your posts, it adds to the picture that further assessment would be a good idea.