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.

Does it happen even when you aren't there?

Yes. The only time it does not seem to be happening is when she gets a lot of vestibular or tactile input and then she becomes almost hyperactive, but it can easily lead to a meltdown when she gets into this state, and she seems to be in an almost negative state of high arousal to everything. She has bitten people and thrown things at other children when she's been in this state. She also seems to lose all sense of danger or fear when this happens, whereas normally she is a very fearful and hesitant child.

Has she had any integration therapy? I don't have aspergers/autism and I've mostly figured out what to do on my own, (avoidance ftw XD) but even the little things help sometimes to make a difference. For me, I obsessively put lotion on my hands because feeling the air directly on my hands and feet is uncomfortable to me. (Which is why I mostly always wear socks.) Maybe it'd help to find the things that comfort her? Like smells a stuffed toys or in my case lots of hand lotion. (That might seem like not a big deal but I do freak out if I don't have any and because I keep building up layers sometimes I can't even open a door because my hands can't grip the nob. It's funny for me to giggle at, but humor helps.) I also am very picky about my clothes, so figure out what materials don't bother her, and don't give her anything itchy to wear. Like one little itch on your back from your clothes can turn into a feeling like ants are covering your body. At least with me, that's what it is like.If you make her as comfortable as you can, then maybe introduce one stressor to her, in a controlled way, so that she slowly becomes more ok with it. So with being held, maybe put clothes on her that give her that snug I'm being held feeling, while not like putting her in straight jacket (I can only imagine that'd be the worst.) so like clothes that more heavy, then as you walk with her and your arms are around her she can get used to the weight of the clothes. Then as she's walking slowly hold her less, until you're just there and she thinks you're around her. Then show her that you aren't and she's doing fine on her own? When I was a kid, I was afraid to have my training wheels taken off of my bike so my parents kept raising it up more and more, until they weren't actually being useful. Just seeing them there was a comfort to me though and when they felt I was ready, they showed me that I was riding my bike all along without help. This made it easy to take the wheels off since I knew I didn't need them anymore. Maybe the same type of thing can be used on your daughter? I'm no expert, so if it helps that's good, but stop if it seems like it's not helping.

Thanks a lot for replying. She has not had any integration therapy. This is the way we need to go however I think. I was mainly worried that her particular difficulties don't seem to fit into any of the sensory profiles I've been able to find so was worried it may not work for her, or might start of a cycle of panic if it is not recognised how difficult she finds moving herself by the OT or whoever else may try to help her with her sensory issues, but I think it is worth a try because she is just not managing.

Thanks a lot for all your suggestions and insight into how you feel yourself.

NP, and everyone with it is different, though it helps to know other peoples coping mechanisms and see if they will help you.

https://www.youtube.com/watch?v=AFYpdiOaeKs She does a good video on the subject, breaking things down that might help you when you talk to your daughters therapist so they know what she's like. If too like the only way you can go is worse, than doing something is at least trying. That and right now she's probably really frustrated that she's feeling a way that she can't articulate to you. With me I'm an only child, so my mom just learned to understand me but she had no frame of reference for what "normal looks like". She's was a teacher, but she dealt with kids only in the first grade, not babies. I learned quickly how to avoid the things that bother me. XD I also taught her those things so she knew what not to do, because it'd make me upset. So she just didn't do that. Like I never really liked to be dirty or feel sticky, and she'd always be there to clean my hands off. ^_^ She's the best. As an adult I do that on my own lol, but when you're a toddler and baby I mean. Like I was never even one to be ok with being messy when I ate food. I was never the kid who'd put her face into a cake. (As much as my mom wanted that picture, I never gave it to her. lol) So I do think early on there were signs that I was different, but as you get older you learn to cope in a better way. (Just tonight I couldn't open a bottle and gave it to her and she was all -_- yeah I can't open it either now that you put lotion all over it with your hands. XD) Making light of things helps. ^_^