Teenage daughter eating disorder

I’ve also just read the other replies and I repeat: get the crisis team involved and get urgent support in an a&e setting. It may be the only way to get through to her. She may need the no from them to take away the hyper fixation on that as a quick fix. Also, take her phone off her or take off the apps that she can be getting this info from (TikTok, instagram being the main 3) because she will not stop hyper-focusing on it if she has free access to the ana images on those platforms.

Also, as someone that does have anorexia and ARFIDS, I also think a tube might be the only way to improve because my sensory issues have become completely overwhelming and I can’t cope with trying to eat things in enough of a quantity to stay alive. Please push for NHS support through CAMHS. Your GP will not act until she becomes so underweight that she will be too far gone to be helped properly. For the sake of your daughter, give her what she wants and get CAMHS/crisis involved when you do. 

Good luck! 

Hi, I realise I’m not a teenage girl but I started to develop my eating disorder when I was 13. When my weight and bloods were all okay, when everyone in my life ignored my requests for help and ignored me when I said I’d passed out. Just because they hadn’t seen it or because they didn’t want to accept that I was telling the truth. I’m now 34 and have an official diagnosis of anorexia alongside ARFIDS. My BMI is mid 17 (trying desperately to get help before I get any more unwell) and dropping every week. I have had heart failure, organ issues, chronic bowel problems, nutritional deficiencies, and yearly anaemia (that gets treated and then comes back every single year without fail). My blood pressure currently sits well below where it should be, my heart has a permanent misfire in its beating, and I vomit blood if I don’t take meds to keep food down if I do manage to get any food in. 

If your daughter has said she’s having problems, please take her seriously, and make sure her GP does too. If, however, she is getting it off TikTok or any other social media, then please be aware that what could start as a hyper focus can very easily turn in to an actual disorder. Especially if she thinks she’s being ignored and not being taken seriously. 

As for her request to go to A&E. Take her, speak to the triage nurse (without your daughter listening) and explain that you need to speak to the crisis team because your daughter is hyper focusing on a disorder that can turn her health upside down in less than a week. Especially if she decides to try and force the issue about getting an NG tube to be fed through. They can speak to her and refer for psychological support, as well as discussing it with the local autism team and the local ED team in time. However starving yourself is as bad for your body as any obvious physical self harm and to ignore it could result in permanent damage. The CAMHS team for your area will know more once that first contact is made. If you’d rather not go to A&E then ring your surgery the next day they’re open and ask for an urgent appointment because this isn’t a routine issue and your daughter could go to extreme lengths before she’s even made it to that appointment. 

Always remember when an autistic person hyper focuses on an eating disorder it is twice as difficult to treat once it takes hold. Please don’t assume your daughter is just messing around. By the time you know she’s serious, you could be forcing her into inpatient stays for the next 1-2 years and having her lose out on so many experiences she should be getting to enjoy. 

Oh I see, I'm sorry that I misunderstood. It's good that you are giving her so many options. It can be hard to talk to people about eating issues and sadly a lot of professionals have misconceptions about eating difficulties and especially with autism related eating issues. In terms of a dietitian I can recommend Dalia Maori. home | dalia weinreb (dalianutrition.com). I have had a lot of bad experiences in terms of help with eating and mental health but Dalia is the only person that has made a positive difference- She probably saved my life and is still providing me with so much support. She is very caring and sees you as a person not just a problem- She has a lot of experience with autistic patients. If your daughter is willing to try a dietitian again, I would really recommend her. She also knows good eating disorder therapists and might be able to help with finding some more support. 

Hi thanks for the reply. For the eating disorder referral she had bloods so I'm assuming the tested for all of these things. 

Hi thank for your reply. Maybe I wasn't clear enough in my initial post. I have arranged counselling and she won't engage. I've offered nutritionist and dieticians. I've tried to get more information but she shuts down. She is on the camps waiting list and I have arranged another counsellor she starts seeing next week. We've tried different  foods and protein shakes. It's not about me not getting her the help. It was more about her fixating on going to a and e  or expecting a quick fix. I've been back to the gp again  today.

Hi, I personally would take anyone that says that they have an eating disorder/ that they struggle with disordered eating, very seriously. It's good that her bmi is good and her bloods are fine but this doesn't mean that she doesn't struggle with food. Eating disorders can occur at any weight- it's about what is going on internally and the struggle is not always visible to the outside. 

I can mainly speak from personal experience: I have struggled with disordered eating and digestive issues for years (undereating at times, tendency to eat the same thing over and over again, ARFID-type issues, comfort eating/binging at times, love for routines, anxiety about eating socially etc). I've recently realised that I am autistic and it is becoming more and more obvious that a lot of these challenges around food are related to autism. My eating issues are not motivated by a desire to change my weight/shape. 

I have periods where I eat what would look to an onlooker as 'normal' (varied healthy diet with regular meals/snacks etc) but I may still be suffering and struggling a lot internally- for example with digestive issues, or lack of appetite, stress about choosing what to eat etc. etc. Just because her eating looks fine from the outside, doesn't mean that she isn't having difficulties and struggling internally. 

Also her bloods being fine is not evidence that she doesn't have eating issues. 

Unfortunately medical professionals often have very little experience with eating disorders, and even less experience with eating issues associated with autism. In my experience, too much emphasis is often put on weight (both in the sense that doctors assume patients are fine if their weight is normal and also in terms of assumptions being made if patients are underweight- I was wrongly diagnosed with anorexia even though I never intentionally lost weight and this misdiagnosis has been quite damaging for me.) 

Your daughter is being quite insistent in telling you that she wants help regarding eating. I would take this seriously. What I am not sure about is how to make sure she gets the right kind of assessment and support. I have had great support from a dietitian for over 2 years now - She is great and has a lot of experience with autistic patients. Unfortunately sessions with her are quite expensive (I was lucky that my university initially helped fund them), so I am not sure if this is an option you would consider: home | dalia weinreb (dalianutrition.com) Here are her details just in case. Unfortunately I think you are probably right that going to A and E is unlikely to give her access to the support she needs. But I really do think it is important that her concerns get taken seriously and that she does see someone about them, ideally a person that has some understanding of eating issues as well as autism. 

I am also becoming more and more aware of how common issues with eating are for autistic individuals. 

Has your daughter specified what aspect around eating she struggles with? Issues around eating are so much more complex than the stereotypes of typical eating disorders. It could be related to sensory issues, digestive issues, lack of interest in food, challenges with recognising fullness/hunger (very common in autistic individuals), struggles to make decisions, love for routines, anxiety etc etc. the list is endless. 

I really hope that your daughter gets the support she is asking for. Issues around food can be so so detrimental and in my personal experience, they only got worse and more complex over time. I got the wrong kind of help for my eating issues when I did seek help (as I was misdiagnosed with anorexia nervosa and not believed when I said that my eating issues had nothing to do with weight). This was extremely damaging and left me with many more issues around food (the binging in part stemmed from this). I wish I had received appropriate help sooner. It can be so exhausting and detrimental to quality of life if you have issues around eating- plus there is the risk to health depending on how these issues unfold. 

Of course everyone is different and I cannot judge what is going on with your daughter in terms of food, if anything. I think the safest route is to make sure that your daughter's concerns get taken seriously and ideally to make sure that she is seen by someone that understands autism related eating issues. If it's all fine then it is unlikely that this would cause any harm. but if she is indeed struggling with food, which is what she is saying, then getting access to the right help early on could be life changing. 

Is she drinking enough? What is she eating? Did they test her vitamin and mineral levels or just do standard blood tests? If she has a very limited diet she may have a vitamin deficiency. She may also have ARFID and see tube feeding as a less stressful option? Or as you mention TikTok it is possible she’s become obsessed with eating disorder related content. Does the eating disorder charity have any therapists who can try and discover the root of her behaviour?