Introduction and request for advice for a parent of a 14 year old daughter with HF ASD?

Hi

Having read a few threads, I thought I'd reach out to this wonderful community and see if anyone can offer me any advice on how to communicate better with my daughter who has high functioning ASD. I am not great at asking for help but this is a challenging time . . . I was diagnosed with early stage *** cancer a couple of months ago. I've had two rounds of surgery and am just going back in for more radical surgery tomorrow. The good news is that it is early stage so the prognosis is good, but the day to day living is rather gruelling and adds a whole new dimension of challenge to our family life.

Our 14 (nearly 15) year old daughter (M) was diagnosed 18 months ago with ADHD and high functioning ASD following a period of high anxiety, withdrawal and a bit of self-harming. She is an only child. The ADHD diagnosis was a huge relief to her as she seemed to feel that it explained a lot of the things which she used to get into trouble at school (and sometimes at home) for – and it certainly helped us understand her much better. But the ASD was different – she refused to acknowledge it – saying that she was nothing like that. An example she uses is that she does have a great circle of friends at school (although she has forgotten that she found friendships much more challenging when she was younger). She is also bright as well as being very good at art, singing and drama – and she is a lovely kind and generally thoughtful girl. In terms of recognisable symptoms, probably the most obvious is her desire to control her surroundings and do things in specific ways – eg: meal times can be challenging as she will insist on laying the table in a very particular way and at a particular interval of time before we sit down to eat – no one else is allowed to help and if not allowed to do this, she will have a meltdown. She also tends to have a very 'self' focus – she will help herself to things without offering to others – want things to be done for her, but will not consider other people's needs – not because she doesn't want to be helpful, it just doesn't occur to her unless it is pointed out. She is generally mortified when she realises that she is doing it.

We have tried to get a second opinion and have at last been accepted for a referral through the NHS (the original diagnosis was a private one) – but that was agreed in April and we are still waiting for the appointment.

Most of the time we muddle along reasonably well – but it can be challenging, We are stretching ourselves to pay for a private school – who are being very supportive, and are very understanding when she needs the odd day off school. Her father is older and is the one that looks after the home while I am the one that goes out to work. Despite her father being very loving, he has a very short fuse – and sometimes finds it hard to distinguish between general teenage bad behaviour and ASD behaviour and can get very angry with her when she is rude or thoughtless (he sometimes also questions whether he, himself, is on the spectrum). I struggle most when I am anxious myself – particularly with this cancer diagnosis or when things are stressful at work.

M is having a lot more meltdowns at the moment and seems very anxious and angry with us. We still do have good days where we are all the best of friends, M is not so hypersensitive and we can have some fantastic conversations. But these days are less frequent - As an example of the type of situations that are becoming more regular and are worrying me: M told me last night that she needed to replace some eyebrow makeup. Our bank account is always quite stretched and it is a constant challenge to get her to understand that when we say no to something, it isn't because we are trying to punish her, but because we simply can't afford to spend the money. So, I suggested that this should be bought out of pocket money. She went into a meltdown about this and told me I was being unfair. When I asked her to explain, and tried to explain that we had to be careful with money, she just started to shout at me that I was unfair and always was mean to her. At this point her father told her to stop being so rude to me – which triggered a complete meltdown and started to scream that she hated him and that he only cared about me and not her, and that we were both horrible – and started to hit herself. She wouldn't let me near her and wouldn't speak to me so I backed off. Once she had calmed a bit, I asked if we could talk to try and understand, but she refused to talk to either of us at all and started watching a television show that she wanted to watch. By the end, she was behaving as though nothing had happened. It is like she just shut it all out.

One thing I realise is that because her father is worried about me, she is interpreting his behaviour to mean that he cares less about her. But there is, I am sure, all sorts of things behind this too, and I don't seem to be able to get her to speak to me She seems so unhappy at the moment and I want to be able to support her but I don't seem to be able to do the right things. I also don't know how to get important messages (like there are boundaries to how much money we can spend on her) to her without her interpreting them as being some sort of punishment.

I am going back into hospital for surgery tomorrow and I know I will be feeling pretty feeble for the first few days after that – I am dreading any miscommunications between her and her father – and any advice anyone could offer would be very gratefully received.