Hello,
My daughter has aspergers/autism and struggles with bright lights, smells, noise and scratchy clothing. We have also recently noticed however that she seems to have great difficulties moving about most of the time. Since being born she was very passive, did not move much, and seemed generally very calm, sort of extremely relaxed. She barely ever cried, or asked for anything. She was good at learning to walk, but liked to be held up when moving around. She had no difficulty standing firm on her legs or using her legs, but seemed to like to be held up and positioned in different places if that makes sense (i.e. did not enjoy walking around without being held up or leaning on her baby walker). She loved being swung and loved her baby bouncer so I don't think it was a vestibular problem. When she potty trained she had no difficulty knowing she needed to 'go' but whenever she did need to, she would not take herself to the potty, she asked to be picked up instead and tried to hold it in as long as possible. She hated walking anywhere and would have meltdowns if we tried to coerce her even with pleasant things. We ended up carrying her absolutely everywhere, even around the house. She hates dressing herself, brushing teeth and hair, putting on shoes or basically moving her arms, head, legs or any other body parts in any way. She likes having her hair and teeth brushed by me, but just completely collapses emotionally (crying, screaming) if she has to move her arms to do it herself.
At primary school we have seen this get much worse. She refuses to let go of the school wall or the fence in the playground and appears to be virtually 'glued' to it. She refuses to play sports and even to get up out of her chair for playtime. She likes playtime but it seems to be that she is finding it immensely difficult to move herself and get herself up our of her chair, and then stay standing. She has been checked for physical abnormalities and has none, in fact her muscles are very strong and she has very good stamina and strength when these are stress tested. She is not in any pain either. Medically she is in great physical health and is well developed.
I am sure this is a sensory problem but I have failed to find any cause for this in the sensory profiles I have read. I am really hoping someone else has some experience of something similar. I can imagine this is going to cause awful problems for her in later life if we do not get to the bottom of it soon.
If I had to summarise her difficulty I would say it looks like she is hypersensitive to moving herself, to actively moving, including remaining upright or standing (she slumps and sits down most of the time, or lies down, or asks to be held upright even now, she is 7). If she has a meltdown she is exceptionally strong and can get up and run around with ease. But it seems she is trying to keep her sensory system calm by not engaging this sense which has to do with keeping herself upright and moving about. Is it proprioception?? I have read proprioception can cause 'floppiness' but I have not ever read of anything this extreme. She is virtually unable to move without having a meltdown it would appear. Often she finds it hard work even to speak or communicate I think for the same reason, as if she is just unable to do it without getting very distressed, because from her face she looks desperate to say something but just can't bear the effort of moving herself enough to do so, leading to frustration and more crying.
If anyone has any experience of this, please, we would love to hear from you. Thanks so much.