My 11-year daughter was diagnosed with ASD at the start of this year. This came after many years of struggle and of being either rejected and/or misdiagnosed by professionals.
I am looking for advice regarding two specific 'Catch 22s' that we have been battling with for some time as a family. I'm sorry if this is a long post - disregard if you please, but I really need to get this off of my chest. We've had no support since the diagnosis, there doesn't seem to be any bespoke helplines out there, and it's eating me up:
Firstly, attachment. For many years, she struggled with separation anxiety. This was mostly prevalent with me, but happened with her dad too. It sometimes took two members of staff at the school to separate her from me. It finally eased at around Year 5 of Juniors. These days she's very independent - fighting for more of it in fact (we're going for the drip feed approach as she's only just started secondary school, which so far is going very well) - but she still craves and demands my undivided time and attention when we're together. She loves her dad, but is very, very focused on me and spending time with me. She likes to know what I'm doing and when, and becomes very distressed if I'm ever ill and in bed. The only exception to this is when she is watching the telly, which is very much a go-to for her - either to wind down, or as a default when she doesn't know what to do with herself. She has a younger sister aged 8 and can be exceptionally jealous at times, despite us repeatedly reassuring her that we are being fair. It's like Big Brother watching me. If anything, I have more 1:1 time with her than with her sister. However, she will invariably pick me as her 'sounding board' and lament. She will mention something that is making her anxious, like a friend taking her time getting from one lesson to the next, and as soon as I show sympathy and try and counsel her, it quickly descends into a huge rumination exercise. I advise, she rejects my advice, and then we go round in repeated circles until it drives me completely crazy, and I lose my temper. She will do nothing of the sort with her dad. So for me, it's a complete Catch 22, and it seems brutally unfair. I either brush it off and show complete apathy - which goes completely against my maternal instinct - or listen, be present and supportive, show her that I have her back, and then pay a hefty price. What am I supposed to do here?
Secondly, structure. From a very, very early age, she has not known what to do with herself when there is downtime. Her default is to watch telly, but I don't allow more than about an hour as I don't think it's healthy. She will generally watch really nice programmes - Blue Peter, Strictly, Love your Garden, but takes comfort in watching and then rewatching, sometimes many times. If we're all pottering, she's all at sea. Completely and utterly lost and very anxious. We try so very hard to suggest ideas, but she will invariably reject them, or interpret them as criticism. Every single one of them. She loses her temper, then either I, or her Dad, or both of us lose our temper with her as she's so rude, and the weekends are more often than not a write-off these days. Most upsettingly though, her sister is starting to really feel it. When it happens, everything else has to disappear as the situation demands all of our focus and energy. She's done nothing wrong here, but she hates it and is completely bewildered by it all. We haven't (yet) told her about the diagnosis, but I am wondering whether this discussion needs to be brought forward. We try and plan weekends, but we are an ordinary family with lots of jobs that need doing. We don't have any family locally, but we try and chat with them on webchat when we can. Again, how can we extricate ourselves from this toxicity?
Back at the start of this year, we gently made her aware of a diagnosis through reading a book together, but despite our best efforts she still feels a lot of shame and has a severe lack of self-esteem. The above two Catch 22s are only making this situation worse, and we really need help in pulling her out of this. She gets herself completely stuck, and it's like she can't get herself out of her hamster wheel thought patterns. We so want to help her, but we just don't know how.
I'd be so grateful for any insights, thoughts, advice. I'm trying so very hard to help her, but the more I try, the worse it's getting, and now as a family we are all struggling in very different ways.
Thanks so much for reading x