Dd (recently dx ASD) and a social situation - any advice?

[NoHaudinMaWheest]

Dd is 15. She has had a conversion disorder (where psychological difficulties show up in physical symptoms) for several years and has been using a wheelchair. She spent the summer in a specialist hospital unit and made quite a bit of progress. She now uses crutches and sticks a lot of the time but still needs the wheelchair in certain situations.
While she was in hospital she was assessed for and received an ASD dx. I was sceptical at first but can now see things that could well fit. DD appears to have found the dx helpful and now talks about situations she always found difflicut but never mentioned before.

She and I go to church regularly (very much her choice to go). The people there have been concerned about her mobility problems and are naturally very pleased to see the improvements. We haven't really been explicit about the possible psychological background.

Now that she is back regularly people are always commenting on how well she is doing and patting her on the back and shoulder. They do this even when I have said that she doesn't want to talk about it. She finds this difficult because it means she is expect to talk about things that are difficult for her and because she is pretty touch sensitive and hates especially being touched on one side and not the other.

I don't know how to get across to people that she really needs to be left alone without drawing attention to dd's dxs which she naturally doesn't want to be public knowledge.
She doesn't want to stop going to church and if she had a break it would just all start again when she went back. She also finds going to other churches difficult as she doesn't like changes in the order of type of service.
Any ideas on how to handle this gratefully received.

Bumping this because we had another difficult day today. I feel like putting a "Please do not touch' sign on her back.

That sounds incredibly difficult. Well meaning people often become offended when it's pointed out their wellmeaning is actually not. I think it's a natural level of human selfishness.

Could you tell them touch is painful for your DD because of her physical symptoms and she'd like to talk about normal teenage stuff with them and school etc? Say she has enough talking to professionals about her disability and outside of that would like to live her life to the full without it defining how people see her?

It sounds very difficult. Are they like this with her because they see her as a child, or as disabled or are they just generally touchy feely people with everyone?

I have been trying to think how it could be broached, and it's not easy is it?
I think I might put it across as a self conscious teenage thing finding it a problem, which to be fair, many would.

Another tack I might use would be a very bright "and how are You" said loudly to head them off.
How may people need to get the message?

I meant, How many people need to get the message?

Thanks for the thoughts. There is a weekly newsheet but I think dd would die of embarrassment if I put anything in there.

There are a lot of different people involved and they are not necessarily the same people each week. Some of the touch thing at the "peace' for example is just what people do especially to anyone who is known to be having a difficult time. I think she gets it especially because she is a 'disabled child - poor thing' UGH.

I am torn between hovering to protect her and leaving her so that the teenagers are more likely to talk to her. She says they are more understanding about what she might want and not want to talk about.

Interesting what your DD is saying about the other teens, would she find it manageable being 'left' with them?

I have had another thought, and wonder if your minister would be sensitive to this. Presumably lots of people may have a problem with touch/ personal space, even though many find touch comforting.

Maybe he/she could give it some thought.

does she have a death stare? (you know the sort, the one that melts concrete) do you?

does sitting down and closing her eyes help in the peace... (one would have to be an insensitive bugger to interupt..

can you recruit some of the teens to do a protective wall? can she?

would she die if you said please do not touch it hurts her. then kick them in the shins see hows they likes it

That will probably work for the after church bit so long as a keep an eye and make sure she isn't pounced on by some well meaning older person.
It is still difficult at other points though.
I know people mean well and dd was very active in the church - a server and helping me with the after church coffee for example before she developed mobility problems. So it is natural for them to be concerned and interested. But the relationship is a bit superficial so it is hard to let people know the best way to handle it.

Actually her body language makes it abundantly clear that she doesn't want to be touched but people just seem to be offended rather than get that she is uncomfortable. I think I will have to make a big thing of it being painful although that isn't the main issue. (And dd and I are both really bad at lying.)

Susan I might suggest the meditative pose to dd. I think that could work.

Dd3 would hate to be touched like that too! She only touches and hugs on her terms!

I wonder if you could approach the worst offenders on the quiet and just say look Dd really wants to chat but she is very uncomfortable with being touched especially just at the moment after being so unwell!
I dont know it might help!

I tend to dive in front of Dd3 if people that she doesnt know well try to engage with her, her hard stare can come accross as rather rude

I think her shirking could be interpreted as rude.

She can't easily stand which is I think part of the problem. She also always used to be very compliant (masking). The ASD dx has freed her to tell me how much she hates it and to use body language to others but she still isn't able to say to others that she finds it difficult.

Thats exactly what Dd3 is like. She rants and raves to me about some things/people but she will never ever speaks out when there are people around who she doesnt know!

We have stopped sending her to school because this was getting worse and worse and leading to a great deal of stress and I am hoping that with lots of support and prompting we may get her to speak to people about things that are important to her.

I have always been a buffer for Dd3 and although we do need to work on it at the moment it works for us!

FWIW, when I first told Dd3 about her ASD she stopped masking at home and we had some very interesting moments behaviour wise, she never stopped masking at school though It was exhausting for her to hold it together every day!

I hope you and your Dd can come up with a solution the the touching thing, I totally understand how she feels, I hate it too!!

Good luck