Struggling!

Hi

This is the first time I have posted here but after another "kick off" i thought I would see if anybody else has similar issues or ideas to help.

We have a daughter who is 11 nearly 12 - along with Autism she has mild cerebral palsy - which currently is less of an issue. 

For the last few years her behaviour has got worse with meltdowns over things she used to have no problems with, for example hospital appointments, haircuts and dentists, even swimming which is what set her off tonight. She is only happy when complaining to us and is constantly rude to people with the way she talks. Its almost like a trigger goes off and she tells herself she must have a meltdown, as that is what she does. I know her brain functions differently and obviously we explain things before doing something different but school have no problems with her at all - nothing - she attends mainstream and the teachers think she is wonderful, Its like she saves it for her family.

I sort of think its because she knows she can, as we will always love her and I know some of it is hormones but it really is draining and I wish there was a way to break the cycle as it does just seem to be a habbit if that is the right word.

We have had a chat tonight about her counting to 10 before she says/ acts on things to give herself a chance to decide if it needed or if to just carry on quietly but i am unsure if she will. It is hearbreaking to see her sobbing as she has got herself into such a state she doesn't know why or how to get herself out of it.

I really am at my witts end with what to do and also dreading a hair cut tomorrow ( the hairdresser has done my hair for nearly 20 years, at my MIL house and used to be able to cut my daughters hair until the last few years. Tomorrow is different tactics as I am hoping to do it under supervision - she has thick curly hair so not easy. I have also tried taking her to a salon, asking her if she would sooner have a man or lady, just have a trim, or have the works - her choice but she refuses all)

We also have a hosp appointment on Mon for a follow up after an op on her leg/knee 6 weeks ago but thats another story but lets say she needed sedating to get her out of the waiting room for the op.

Any advice of help will be much appreciated as things can't go on. I think I will also contact the paed and try to get an appointment to go without her so we can have a proper chat.

Parents
  • I would endorse writing things down. I kept notebooks for this from my twenties, and wish I'd done it when younger, but doubt I'd have been able to keep it secret without questions being asked. 

    Writing things down and working out where things go wrong has been a useful strategy for me. It could be entirely personal to her, or a basis for talking things over with you, but the notes made would need to be for her eyes only to be effective. Asks a lot of a parent not to peek, but getting things down on paper and looking at how things fit together, could be really useful to her.

    The problem with autism is it takes a long time to process misunderstood information. If you are only picking up parts of dialogue, you are then left trying to understand what was meant, or why people reacted badly to something you didn't feel unjustified. Often these are things that NTs would say and forget. Someone on the spectrum may still be trying to resolve it weeks ior months later.

    She might say rude things but perceive jokes and double meanings as direct insults to her.

    As a result the brain is constantly in turmoil and has difficulty taking in current information. Being able to write things on paper, draw connecting arrows, and so on, takes this activity out of the grain and into a different storage system.

    It is important for parents to appreciate that social communication on the spectrum is foggy at best. Part of the problem is that being poor at picking up inflexion and body language means you don't learn from numerous exchanges through life as NTs would do. So the autistic brain becomes an analytical machine re-examining thousands of perceived sleights into infinity.

    It may be that people underestimate this, supposing it isn't as bad as being deaf, but I think this underestimates the problem. You hear, but you don't integrate and interpret social information properly. With autism you don't get enough context, but you do hear a lot of puzzling speech. Trying to sort it out is what does the damage.

Reply
  • I would endorse writing things down. I kept notebooks for this from my twenties, and wish I'd done it when younger, but doubt I'd have been able to keep it secret without questions being asked. 

    Writing things down and working out where things go wrong has been a useful strategy for me. It could be entirely personal to her, or a basis for talking things over with you, but the notes made would need to be for her eyes only to be effective. Asks a lot of a parent not to peek, but getting things down on paper and looking at how things fit together, could be really useful to her.

    The problem with autism is it takes a long time to process misunderstood information. If you are only picking up parts of dialogue, you are then left trying to understand what was meant, or why people reacted badly to something you didn't feel unjustified. Often these are things that NTs would say and forget. Someone on the spectrum may still be trying to resolve it weeks ior months later.

    She might say rude things but perceive jokes and double meanings as direct insults to her.

    As a result the brain is constantly in turmoil and has difficulty taking in current information. Being able to write things on paper, draw connecting arrows, and so on, takes this activity out of the grain and into a different storage system.

    It is important for parents to appreciate that social communication on the spectrum is foggy at best. Part of the problem is that being poor at picking up inflexion and body language means you don't learn from numerous exchanges through life as NTs would do. So the autistic brain becomes an analytical machine re-examining thousands of perceived sleights into infinity.

    It may be that people underestimate this, supposing it isn't as bad as being deaf, but I think this underestimates the problem. You hear, but you don't integrate and interpret social information properly. With autism you don't get enough context, but you do hear a lot of puzzling speech. Trying to sort it out is what does the damage.

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