it is the first time I am writing n this forum, but I somehow felt like doing it, probably because I saw a lot of similarities with my daughter (also 13 years old and probably on the autistic spectrum).
I am not offering you any advice what to do, as each child is different and needs different help. However, I would like to tell you my story, as there are many similarities. Maybe, it will give you some hope or ideas what you could do to help your daughter.
My daughter was admitted to an ED ward in December last year (by then 12 years old). Before anorexia ‘broke out’, she was an almost normal, happy teenager, though there were some signs of obsessive and autistic behavior (actually, we had her tested on autism, when she was 6 years old, but were told that she was not autistic, as she was able to make friendships. We have always had our doubts on this negative diagnosis…).
Anorexia started quite suddenly in November 2019, in form of rapid weight loss, with the onset of puberty. Mid December 2019 she was hospitalized in an ED Ward. There she immediately started to copy behavior of other ED-patients, in a competitive way. After about a week, we hardly recognized our daughter anymore: she refused to drink and eat and had become highly suicidal. Soon, she was tube fed, but manipulated the tube very often. In addition, she scratched her arms and legs open and was very, very depressed, and anxious. She could not think rational anymore.
Since she had become highly suicidal and refused tubefeeding, she was soon replaced to the high protective ward, where she stayed for about 6 weeks. It was somehow better for her, as there were no other ED-patients there and there were more personnel to keep an eye on her. Still, even there she managed to harm herself very often. She got medication (Olanzapine): we first saw some improvement (less anxiety), but after a few days, the effect waded away. The only real improvement we saw during her stay on the high protective ward, was that she got rid of the tube feeding. From then on, she got most of her daily calories in form of a liquid astronaut food (which is called Fresubin, here in Germany).
In March this year, the doctors told us she was on a healthy weight, so weight gaining was stopped, and they kept her on a diet of about 2000 calories a day (mostly in form of Fresubin). From then on, the focus was on mental recovery in form of psychotherapy. We had our doubts about this decision, as she could not be reached by any rational argument. The therapy particularly focused on ‘taking responsibility’ and on ‘making the choice to be healthy again’. It did not make any sense to her. The only thing she kept repeating, like a mantra, was that she wanted to be underweight. We also had family therapy, during which the therapist wanted us to find out the reasons that our daughter had developed anorexia. It just did not make any sense to us…
By that time, we did not see any light at the end of the tunnel anymore. We thought we had lost our daughter forever: we feared she would either die or she would remain in mental wards for the rest of her life. As she could not be reached by any rational argument, we really did not understand how psychotherapy was going to help her.
So, we decided to take her home (Mid-March). The doctors and therapist were not amused at all when we told them about this decision and warned us that it was highly irresponsible to do so.
The first 2 months after we took her home were hell. We kept her on the same diet as in the hospital (very difficult, but we somehow managed to let her eat). She did not make any mental progress at all. We had to keep an eye on her 24/7 as she was still suicidal. She was screaming all day, scratching her arms and legs and pleading us to make an end to her life. It was very, very stressful for all of us and very often, we had to call the emergency line of the mental hospital to ask for advise (where they mainly told us to simply bring her back).
We had arranged a therapist nearby, whom she visited twice a week, but she did not respond to the therapy at all. Already after a few weeks the therapist, told us, she did not know what to do anymore. She strongly advised us to send our daughter back to the ED ward of the hospital.
We started reading, on this forum, but also in many, many books about anorexia and discovered that our daughter was not weight-restored at all. We told this to the doctors and therapists of the hospital, but the doctor found it highly irresponsible (even dangerous) to raise her daily calories, because of the suicide danger. The only thing the told us, was that we had to bring her back to the ED ward. He kept repeating that she was, according to statistics, not underweight anymore, even though we told him many times that her pre-anorexia weight had been much higher…. He even told our daughter herself that she did not have to gain any weight anymore.
Early June we officially quit her therapy, as we had not seen any progress at all. Instead, we radically decided that we wanted our daughter back. We started to raise her daily calories drastically (3000 calories a day), despite extraordinarily strong warnings not to do this from the psychiater of the clinic. We hired an online FBT therapist from abroad and with this support, we managed to let her gain about 0.5 kilo a week.
After only 3 days of 3000 calories a day (mainly consisting of adding fat in form of cream, butter and oil, wherever possible), we saw some very subtle signs of mood improvement and less anxiety. After 1 week her (autistic) brother told us that he had the impression ‘she was doing much better’ and after only 2 weeks, she told us herself that she felt some better. From then on, for the first time in many months, we saw light at the end of the tunnel: though ED thoughts are still present, she is increasingly more able to cope with these thoughts and is making great mental and physical progress. She even told us last week that she simply feels happy again and that she is not depressed any more. She also started to work on all kind of hobbies and last week, she even went some hours to school.
She is still on the way of recovery and I know we have to be patient, as it will probably take a long time to recover fully. However, when we compare her mental and physical status with her status of only 7 weeks ago, the difference is very, very impressive. As she is still not weight restored right now (still a few kilos ahead of us), we only expect her to become even better. But even already now, we have our daughter back, though she is still ill and will need a lot of support from us in future times. Still, she is no longer the ‘monster’ we did not recognize anymore. Even the psychiater told us 2 weeks ago that he was extremely impressed by her mental and phsyical recovery (although the clinic officially still does not support rapid weight gain…).
In our case, we ‘simply’ listened to our parental instinct: both the therapy in the hospital as well as the therapy that she got when she got home, did not bring any progress at all (rather the opposite). It just did not make any sense to us.
Back to your daughter: I am not sure if my story can help you. But the main question I want to ask you is: are you sure she is weight restored? Are you sure she gets enough food (especially fat; My daughter still needs a lot of fat…)? I found it amazing what a great difference it made, when we increased her diet to 3000 calories a day, a large part of it being in form of butter, cream, and oil
I know what you are going through, and I wish you all the best to find a way to help your daughter. Please take care of yourself as well and do not give up hope. There will be light at the end of the tunnel.