Scared for my daughter, worried about handling this badly

[Nooneelse]

Hi, my daughter is 14. She is autistic, I mention this because she is very order driven, much of her life revolves around doing certain things at certain times in certain ways - having control. Although she describes it as "her brain", not herself, if that makes sense??

She has always been fit, healthy and enjoyed an active way of living (particularly loves to dance). She has always enjoyed her food, yes, she has to have certain foods cooked particular ways and only served certain ways, but she's never turned down any chance to enjoy her favourite foods.

In the last 3 months she has "taken control" of her food. She has dropped 2 dress sizes (not in the habit of weighing, so no idea how much actual wight she's lost, but it's very noticeable), and will only eat what her brain tells her to eat. Her meals are regimented, and she will only eat at meal times. She will not eat any extras, no snacks, no puddings, nothing.

I'm watching her struggle with tiredness, she's always cold and she has no desire to do anything other than her routine things. I just don't know how to handle this and I'm scared of doing or saying the wrong thing. I've no experience of eating disorders, and I'm really concerned this is the way she's heading.

She is eating under half of the recommended calories per day for a 14 year old girl. She does two 1.5 hour dance classes and an hour Zumba each week, and my DH wants this to stop until she eats more. I haven't told her this as she will panic. I know she exercises in her bedroom, but not sure how often or what she does, but from what I'm reading, these are all signs things are rapidly going downhill.

I really hope someone here can advise me please, I've thought about the doctors, but don't think they'll take me seriously as she eats still - I almost feel daft for worrying when I imagine the conversation with the Dr, but, I can see her wasting away in front of me and I'm terrified.

I hope I've made sense, sorry if I've rambled. Happy to answer any questions and grateful for any help.

Thank you for taking the time to read.

Hi @Nooneelse

You are absolutely right to be concerned. As a woman with anorexia (I am long in recovery now and have had no relapse since 2007) I can see very clearly that this is an obvious threat with both her restriction and her exercise behaviour. There is a misconception that people with anorexia don't eat. They do, they just restrict -often to the barest minimum to survive - and often they will over exercise to compensate for those few calories that they do it.

Mentally it is a cage and one that is so incredibly hard to escape and it isn't just a case of telling someone to eat. There is an incredible fear of eating, of the food and the way it makes you feel. Often people with anorexia will start self-harming in other ways, such as purging in order to feel at peace. Peace comes with emptiness. I know this feeling so well and I fight this constantly.

As her mother, you know her best. You must take her to a doctor who should refer her to a local ED clinic. It will be horrible and she will fight you maybe every step of the damn way. If the GP doesn't help, you see another one. And another until someone refers. Her life depends on this. But you can do this. She is so lucky to have her loving mum looking out for her and worrying (my 11 year old autistic daughter is showing signs and I get the fear). You are doing a great job. You are her strength. It'll be a fight, but you will win it. Things can get worse, and they'll go up and down, but there is no other option but to press on. EDs are lethal. But, you are already winning because you can see it and you are here posting. Much love to you both.

Hi @AloneLonelyLoner ,

Thank you for taking the time to read and respond. It's strangely reassuring to hear I'm not going mad and these are genuine concerns of something very real. I also admire your strength in sharing your experience and your worries for your own daughter (I hope she's ok).

I recognise the fear of food that you mention. She thinks long and hard about everything she eats, or considers eating. We do food shopping together, and cooking too, which she loves. Every new food is studied meticulously before the decision is made whether to buy or not. She bakes almost daily, but won't eat any of it. She eats meals that she cooks, but won't eat from anywhere outside of the house - she used to love takeaways and afternoon tea at Costa occasionally.

I won't go on, it's obvious really. I'm just terrified it's all out of control. I'll call the GP tomorrow and see where we go from here.

Thank you so much for your advice and kind words, it means so much that you reached out to help.

Hi,
I’m sorry you find yourself in this situation, my daughter is recovering well from Anorexia, please feel free to message me and I’ll point you in the direction of some great resources as accessing help for ED can be a long wait.

Can you involve the school, they will have resources and experience

Thanks Goawayquickly, I've messaged you .

EleanorReally, we took her out of school and she is homeschooled (online schooling) now. Due to difficulties related to her Autism and sensory problems she couldn't cope in the school environment.

I've contacted the place we were referred to for her diagnosis of autism in the hope that they can help - they have said they have specialists in all areas of difficulty. So far they have asked me to supply her height and weight, so I don't hold out much hope as she's technically just within healthy weight, not yet below. Although she looks so very thin .