Published on 12, July, 2020
My daughter (15 years old) has recently been diagnosed with Aspergers. I have been directed to this website as a source of information and I would really appreciate any advice anyone could offer. My child is also self-harming, has an eating disorder and rarely sleeps at night. She has been bullied at school and is now a loner who obsesses over her studies and has quite spectacular meltdowns at home. We are attending sessions at CAMHS for the eating disorder. The school is aware of this and also know that my daughter is not eating or drinking for the entire school day (in the year of GCSEs) but I feel I am up against a wall of silence. There are no responses to my emails or telephone calls following the diagnosis. Eventually the CAMHS counsellor called and was assured the school would do whatever it could to protect my child - but nothing is being done apart from my child then being taken out of a lesson and asked if everything was okay. What should I do?
Hi there, I have Aspergers myself and I've been sure for a few years that my eldest daughter (now 21) also has Aspergers, she also has history of eating disorder, it's at a manageable level now but I do remember well how traumatic I found it a few years ago when it was at it's worst. There is something about having watched my child trying to starve herself to death that has left a scar that will never completely heal, even now I'm hyper vigilant if I think she's not eating enough or is exercising too much. So I can completely empathise with how anxiety provoking this must be for you. It's really good that she's seeing CAMHS for the eating disorder, do you feel that is helping? As for the school, I think someone else has given some good advice as to how to get help for her in school, the fact that she's formally diagnosed with Aspergers should go in your favour in terms of getting her support at school but I guess as with everything there's a process to go through to get that support. Good luck and let me know how you get on.
Hi Kitsun, thanks so much for your post. I'm sorry to hear about what you have been through with your daughter. I find it hard not to get upset when I find evidence that my daughter has been through the bin or munching handfuls of cereal when she is on her own. There was a slight increase in her weight when she was weighed at CAMHS this week and she wasn't happy with this, so since then she has eaten next to nothing. The CAMHS counsellor is being very supportive - just I still find it difficult sometimes to cope with on a day to day level. I wish you and your daughter the best of luck
One thing that just caught my attention is that you said your daughter wasn't happy with the small increase in weight when she was weighed this week. When my daughter was being seen and weighed weekly by CAMHS they used scales where the weight wasn't displayed on the scales, it was connected by a wire to a device that the practitioner held in her hand which displayed the weight, so my daughter couldn't see how much she weighed and whether she had gained or lost weight. Maybe ask the people who are seeing your daughter if they could do the same as it sounds like it isn't helpful for your daughter to know if she has gained weight.
I have to say that the only way I got my daughter through the worst stage was by sheer determination and relentlessness on my part, I know they give you all this advice on being gentle and understanding about it but honestly, I nagged her til she ate all of her meals and snacks; even though it took over an hour, I sat outside the toilet or her bedroom with the door open to ensure she wasn't being sick after meals, often while breastfeeding my now 4 year old at the same time; I had her on 1:1 observation from the moment she woke up to the moment she went to bed while also looking after the baby and I snuck pureed marzipan in her milkshakes and hid anything else high calorie in any other meals/snacks that I could get away with her not noticing. And it worked because I'm a very determined person when I set my mind to something. And I make no apologies for how I went about it, because, as a mother, when your child's life is in danger, you do what you've got to do.
For the record I'm not in any way advising you to do things the way I did, and I would certainly never do any of that to a patient, I'm just explaining how I did it with my own child.
That’s ok.
That type of thinking, the goal focused tunnel vision thing can be a strength once you learn how to harness that ability to achieve positive things but it can be a bad thing when it’s focused on more negative outcomes. Unfortunately it takes age and wisdom to learn that. I think that style of thinking is also a reason why eating disorders are quite common among females (and some males) with ASD, you need that single mindedness to be able do that to yourself. Research shows that even people who suffer from an eating disorder but don’t have an ASD diagnosis, will still have a higher number of autistic traits compared to the general population. Personally I’m lucky enough to have never had an eating disorder but I belong to a few Facebook groups for people with Aspergers and there are people posting about their eating disorders quite frequently.
Hopefully a more positive outlook towards food can be maintained.
You mention that she hair pulls due to anxiety, has she been doing this for long? I’ve actually been a hair puller since I was 8, though I’ve stopped for a few months now. What I realise now is that it’s stimming/self calming behaviour.
Thanks for all your replies, by the way. I really appreciate it
Hi, your character sounds like my daughter (total tunnel vision to achieve a goal) :). You know how it is, one step forwards, three more back. This was a very positive moment for her, but it's maintaining this attitude to food that's the problem (and yes, there are sensory issues with the eating disorder). It's half-term now and I am hoping that she can feel more relaxed about her food while she's at home. I overheard her helping herself to some pizza today - but then I see her tugging at her hair while she's working out how many calories she's consumed (she has pulled out a lot of hair due to her anxiety).
Hi, yeah as I said I would never advise anyone else to use the same approach as I did. It’s just how I am, it’s how my Aspergian brain works. If I want/need to achieve something then I get total tunnel vision and the only thing that matters to me is achieving that goal. I do however also realise that most people are not like me and that tactfulness and softly softly may often be a better option.
Also though, it was a response to how critical things had got with her. Prior to starting seeing CAMHS She’d got down to 5 1/2 stone. She was only eating 400-500 calories a day and that was being brought back up as soon as my back was turned. CAMHS were quite clear that If it hadn’t been for mine and my husbands profession, she would have been admitted to an eating disorder unit for several months. So it was a case of getting her to weight restore ASAP or she’d have had to go to a unit.
It must be worrying for you that she is self harming also. It’s difficult isn’t it, trying to rationalise with someone with an eating disorder? I remember having untold amounts of circular conversations with my daughter, trying to break some of the thinking patterns and challenge the beliefs that were allowing the illness to keep a hold of her. I do remember also though when the odd bit of insight started to creep in, like at one point she was on a 3500cal/day diet as that was how much it was taking for her to gain weight. She actually turned around to me one day and said ‘if it takes this much food to gain weight then what was the point in me restricting my food so much in the first place?’
Its really positive that your daughter ate a good amount of the burrito. I do hope it’s a sign that the illness is starting to weaken its grip on her. It sounds like there’s an element of sensory issues involved in your daughters eating disorder.
Hi, my daughter is also self-harming, so I do feel the need to walk on egg shells around her. CAMHS know about this, so together we are trying to convince my daughter that putting on weight is not a crime. What I am trying to do is introduce her to different foods/textures with lots of colour - often when she isn't expecting to see food. A few days ago, I surprised her by buying a burrito while we were in town and she couldn't stop herself from eating a good portion of her food. She even shouted out 'Who wants an eating disorder when you can have food like this'.