Advice please

Hello

My daughter is awaiting a diagnosis for autism. She has been seen by many healthcare professionals and they have all said that it very clear she is autistic. This is completely new to us as a family and I am learning as I go. I am seeking advice and support where I can. We have just celebrated her 13th birthday and we did everything she wanted to do. She has seemed really happy all day and this evening she has had a huge meltdown, she is withdrawn and crying. She struggles to communicate (she can talk perfectly but she cannot express herself in words) this has always been the case. I am unsure why she has reacted like this, like I said this is all new to us. I am looking for advice and to ask if this is a common thing. Maybe it’s all been too overwhelming for her I don’t know. She refused to do her birthday cake and wants to leave it until tomorrow, which we totally respect and we wouldn’t push it. It’s quite upsetting as a parent I don’t know what we have done wrong. 

Thank you

Parents
  • It sounds like you haven't done anything wrong! It's amazing you've been kind and respectful about her requests.

    I had similar issues with language when I was young (I still do occasionally). I had trouble expressing the vivd imagery in my head, as every though is very visual. I had trouble identifying or finding the word for exchanges, emotions, objects, etc. Now when I get stuck, I just start describing the entire scene in my head. Because I had difficulty building my vocabulary, it was hard to follow nebulous cliches or when someone else wasn't specific and direct. Even now, in my 40s, there will be moments when a word becomes nonsense or I need to double check I'm using the correct term for the definition I'm attempting to convey. 

    My mind is a bit like a library - things are catalogued but not orderly. There are volumes of things I'd love to just delete. I intake everything and all at once, so it's easier when my surroundings aren't too chaotic or I can focus on doing one task at a time. If there's too many humans, too much noise, several things happening at once, it's a bit like being poked at from every angle with everything demanding my attention or constantly being interrupted. I've learned to focus on one thing to completion if possible or I can even become a safety issue! 

    Crowded locations can still bring me to a puddle of tears on a rare occasion, when I was young I'd just cry all the time out of frustration or when asked a question where I had images but couldn't assign words to them. As I gradually learned to create my own psychological and physical space, exit when overwhelmed, create my own aesthetics (sensing much more than most), assign proper emotional and physical boundaries, make lists, etc., it definitely eased the frustration. And learning logic helped a great deal - the system of communication / argumentation. However, it took a long time to expand my use of language.  I think in my mid 30's the melt downs stopped but I wasn't well parented. Although, I had a friend throw a massive birthday for me at 35 and I think I retreated in to a dark room alone several times during the night to just breathe and regroup. That helped get me through the night. The friend who threw it felt offended a bit but years later realised I was autistic & that changed her memory and her feelings about it!

    You sound like a supportive parent. At times I had wished my mother would treat me like a complete stranger & assume she didn't know me. She was always more open and (even if it was pretend) seemingly gave humans she didn't know room to express, or would genuinely seek to understand them. My son now is a bit more like me. I've taught him how to tell me when he's overwhelmed and stressed I just allow him time decompress. He knows I'm always available to help however I can. Just being available and seeking to understand is incredible parenting! Why not cake for breakfast? 

Reply
  • It sounds like you haven't done anything wrong! It's amazing you've been kind and respectful about her requests.

    I had similar issues with language when I was young (I still do occasionally). I had trouble expressing the vivd imagery in my head, as every though is very visual. I had trouble identifying or finding the word for exchanges, emotions, objects, etc. Now when I get stuck, I just start describing the entire scene in my head. Because I had difficulty building my vocabulary, it was hard to follow nebulous cliches or when someone else wasn't specific and direct. Even now, in my 40s, there will be moments when a word becomes nonsense or I need to double check I'm using the correct term for the definition I'm attempting to convey. 

    My mind is a bit like a library - things are catalogued but not orderly. There are volumes of things I'd love to just delete. I intake everything and all at once, so it's easier when my surroundings aren't too chaotic or I can focus on doing one task at a time. If there's too many humans, too much noise, several things happening at once, it's a bit like being poked at from every angle with everything demanding my attention or constantly being interrupted. I've learned to focus on one thing to completion if possible or I can even become a safety issue! 

    Crowded locations can still bring me to a puddle of tears on a rare occasion, when I was young I'd just cry all the time out of frustration or when asked a question where I had images but couldn't assign words to them. As I gradually learned to create my own psychological and physical space, exit when overwhelmed, create my own aesthetics (sensing much more than most), assign proper emotional and physical boundaries, make lists, etc., it definitely eased the frustration. And learning logic helped a great deal - the system of communication / argumentation. However, it took a long time to expand my use of language.  I think in my mid 30's the melt downs stopped but I wasn't well parented. Although, I had a friend throw a massive birthday for me at 35 and I think I retreated in to a dark room alone several times during the night to just breathe and regroup. That helped get me through the night. The friend who threw it felt offended a bit but years later realised I was autistic & that changed her memory and her feelings about it!

    You sound like a supportive parent. At times I had wished my mother would treat me like a complete stranger & assume she didn't know me. She was always more open and (even if it was pretend) seemingly gave humans she didn't know room to express, or would genuinely seek to understand them. My son now is a bit more like me. I've taught him how to tell me when he's overwhelmed and stressed I just allow him time decompress. He knows I'm always available to help however I can. Just being available and seeking to understand is incredible parenting! Why not cake for breakfast? 

Children
  • Hi

    Thank you so much. I don’t care if my daughter had five heads she’s my daughter I just want to understand what more I can do to help her. She is struggling with lots of things at the moment. She has always struggled with communication. She keeps reverting back to a toddler with her behaviour at the moment that is difficult for me to understand why, she s 13. She has health issues, doesn’t sleep much, eye problems, really bad excema I think due to stress, anxiety and panic attacks, she has some sort of seizure when she does sleep and she has started questioning her identity. Again boy, girl I don’t care I love her and that won’t change. I will always be there for her and support her but I need to talk about things I am struggling, my daughter seems like a completely different person and this is very hard and if I am completely honest it’s upsetting at times and I am shattered. She isn’t of course she had been masking all her life and got to the point where she couldn’t anymore I think. As I have said this is all new to me. 

    You also sound like an amazing parent and very supportive of your son. It must of been hard not having that support from your mum. I know things were a lot different when we were children although it shouldn’t have been. Home should be every child’s safe place and free from judgement and to feel accepted and loved no matter what  

    it’s very good of you to share I am so keen to learn as much as I can to not only help my daughter but to understand more to help my husband and son understand too. It can be very difficult when my daughter doesn’t communicate. 

    No cake she has been very withdrawn today so I will try again tomorrow