Going through assessment and eating disorder

Hi, my daughter was recently assessed for an eating disorder, as she had dropped to 82% of her recommended weight and was /is obsessing about calories, weight, being slim and exercising. Five weeks later, she has only put on 700g and is trying hard to put weight on but still struggling and has an overwhelming obsession with food/exercise. 

During our assessment, the eating disorder nurse suddenly told me they think Katie has HFA an that there is no mental health issue, it's all to do with rigid thinking and that food and health are her special interests. I do know she has a few traits, but I don't agree that there's no eating disorder at all, she has many classic symptoms even if they are caused by autism. All sh talks about is eating healthily, is obsessed with helping me cook and won't eat chocolate unless she has decided maybe one day in ten to allow herself a treat day. But she does enjoy her main meals as long as they are healthy and she knows roughly what the calories are etc.

The paediatrician this week said she may be borderline so is sending us and school questionnaires. She'll use those to decide whether to do in depth assessments which could take a few months or possibly up to a year due to waiting lists. In the meantime, I am so anxious and upset trying to  encourage my D t eat more and dreading the weekly weigh! At least she's not losing weight now but her arms are so thin and she just isn't her usual self. I am ok most mornings, I work from home as a writer which has been flexible but also a little tough while I'm feeling like this. I would call the camhs nurse back but I don't think they will do anything as they say there's not a mental health issue. Only option I can think of if the weight doesn't go on well, is to self-refer via the anxiety route, as the ED is based on anxiety about getting fat and unhealthy.

Parents
  • Hi my daughter has ASD and is being treated for an eating disorder.  It is highly likey that if you , her mum,  are worried she has an eating disorder then she DOES have an eating disorder.   If you are concerned about her weight loss fight for your daughter to see CAMHS again.   I have and still am in your situation .  When my daughter first became ill at 14 I would sleep in bed with her worried she would have a heart attack and I wouldn't be there.   She ended up in A&E was in hospital for 9 weeks and then in a tier 4 CAMHS unit for 14 months.   

    Diagnosed with ASD whilst an inpatient we have been advised that it is more difficult for ASD girls to let go of their anorexic thoughts due to their rigid thought patterns.   Try and get treatment for your daughter as soon as possible because early intervention is essential to avoid inpatient admission..  4 months after discharge my daughter was readmitted as an inpatient and has been there since February.

    I know this post sounds negative and scary but I have lived with anorexia and ASD for 2 years now and I know how heart breaking and  scary it is and it is difficult for friends and relatives to understand the fear and helplessness it can create. 

    I am grateful for the inpatient treatment that my daughter is receiving (even though she hates being there) because without it my daughter wouldn't be here.   Summary: catch it early, fight for treatment for your daughter and steel yourself for a long haul.  Recovery from eating disorders is a slow process.

Reply
  • Hi my daughter has ASD and is being treated for an eating disorder.  It is highly likey that if you , her mum,  are worried she has an eating disorder then she DOES have an eating disorder.   If you are concerned about her weight loss fight for your daughter to see CAMHS again.   I have and still am in your situation .  When my daughter first became ill at 14 I would sleep in bed with her worried she would have a heart attack and I wouldn't be there.   She ended up in A&E was in hospital for 9 weeks and then in a tier 4 CAMHS unit for 14 months.   

    Diagnosed with ASD whilst an inpatient we have been advised that it is more difficult for ASD girls to let go of their anorexic thoughts due to their rigid thought patterns.   Try and get treatment for your daughter as soon as possible because early intervention is essential to avoid inpatient admission..  4 months after discharge my daughter was readmitted as an inpatient and has been there since February.

    I know this post sounds negative and scary but I have lived with anorexia and ASD for 2 years now and I know how heart breaking and  scary it is and it is difficult for friends and relatives to understand the fear and helplessness it can create. 

    I am grateful for the inpatient treatment that my daughter is receiving (even though she hates being there) because without it my daughter wouldn't be here.   Summary: catch it early, fight for treatment for your daughter and steel yourself for a long haul.  Recovery from eating disorders is a slow process.

Children
  • Hi Eleanor thanks for your insight and advice. Unsure as to what to do now as my daughter has started to eat a bit better and has put on 2kg. She is till very rigid about some things but actually allowed herself a curly wurly and cake this week. She says she still feels very anxious about putting on weight and scared of getting obese, as she puts on a little bit she says she will be terrified that her weight willgo out of control, so her thinking is still not great. I have signed us up to walk a charity run that she was determined to do and I'm finding that telling her she can't do it unless she keeps gaining gradually is making her force herself to eat more. She says that she doesn't want to eat the snacks etc but wants to do the sponsored walk more so her rigidity is actually helping her in this instance!

    I'm wondering about keeping an eye on her as she gains (very slowly) and if whe seems very anxious once she has gained a little more, going back to cahms to see if she can access support for her anxiety, cbt ec, as they just said there's no mental health issue. Diagnoses for autism is a long term thing and the weight and anxiety is my immediate concern. She is still only 43kg and 160cm tall.