13 year old - low mood and losing weight rapidly

Hi, I am not sure if I can give any advice but I can share my personal experiences. I am autistic and I struggle with a lot of digestive issues and issues around food and I also tend to get stuck in quite rigid routines around lots of things including movement. I think it’s very important than when you seek support for your daughter they are aware that she is autistic and have a good understanding of autism. I have gone through phases where I unintentionally lost a lot of weight and I survived off eating only a handful of foods in the same pattern. It was terrifying and not intentional but I also couldn’t seem to change things. This often coincided with me getting extremely burnt out and overwhelmed and exhausted and I sometimes think that this was my body’s way of telling me I needed a break and that I needed to stop. For me digestive issues complicate things as it makes eating harder and as I am also anxious about triggering digestive issues which makes me more cautious and more likely to stick to familiar foods and routines. I unfortunately got misdiagnosed with an eating disorder eventually (before I knew that I was autistic) and it caused a lot of damage and further issues around food that I hadn’t had before- Thankfully a dietitian eventually realised my diagnosis was not appropriate and she suspected I might be autistic (as my behaviour around food reminded her of other autistic patients), which is how I eventually ended up getting assessed. The NHS also eventually recognised that the eating disorder was a misdiagnosis but the damage was done. It’s very important that medical and mental health professionals understand about autism. There is also evidence that autistic individuals with more typical eating disorders also benefit from tailored treatment and support. 

It sounds like your daughter is struggling at the moment- how does she feel about school? You mention that she eats when at home but that you suspect that she doesn’t have much at school- do you think this could possibly be as school could be a stressful place or because the food there is not right? I’m not saying this is it but stress can also have a massive impact on appetite so this doesn’t necessarily have to be deliberate restriction of food. 

Do you think there could be anything else worrying her or stressing her?

I also don’t know how to best help- it can be a vicious cycle as under-eating also affects mood and low mood affects appetite etc. 

It sounds like you are doing the right thing by being there for her and being supportive without putting too much pressure on her. When seeking help, I would try to ensure if you can that you can see someone who has a good understanding of autism. If you do end up having to engage with eating disorder services, you could if necessary consider sharing some info on links between autism and eating issues eg. https://peacepathway.org . I also believe the NAS has some good resources that could be useful. 

Regarding the exercise routine- it could be a way of trying to burn calories but it could also mainly be a way of relieving stress. When I am feeling overwhelmed, I tend to get more rigid in my routines and having something like an exercise routine to do everyday which is going to be the same no matter what unexpected and unpredictable things happen that day, can be very comforting. However it can also become a source of stress in itself as it can be very stressful when you then can’t do it… I do feel trapped by my routines at times as it makes me very inflexible. It does help to know though that all of these behaviours are there for a reason and tend to perform some sort of function. That doesn’t mean they are necessarily healthy or helpful or harmless in longterm but often they are ways to cope. 

I’m sorry that I can’t be of more help. I hope you find a way forward. 

Hi, I am not sure if I can give any advice but I can share my personal experiences. I am autistic and I struggle with a lot of digestive issues and issues around food and I also tend to get stuck in quite rigid routines around lots of things including movement. I think it’s very important than when you seek support for your daughter they are aware that she is autistic and have a good understanding of autism. I have gone through phases where I unintentionally lost a lot of weight and I survived off eating only a handful of foods in the same pattern. It was terrifying and not intentional but I also couldn’t seem to change things. This often coincided with me getting extremely burnt out and overwhelmed and exhausted and I sometimes think that this was my body’s way of telling me I needed a break and that I needed to stop. For me digestive issues complicate things as it makes eating harder and as I am also anxious about triggering digestive issues which makes me more cautious and more likely to stick to familiar foods and routines. I unfortunately got misdiagnosed with an eating disorder eventually (before I knew that I was autistic) and it caused a lot of damage and further issues around food that I hadn’t had before- Thankfully a dietitian eventually realised my diagnosis was not appropriate and she suspected I might be autistic (as my behaviour around food reminded her of other autistic patients), which is how I eventually ended up getting assessed. The NHS also eventually recognised that the eating disorder was a misdiagnosis but the damage was done. It’s very important that medical and mental health professionals understand about autism. There is also evidence that autistic individuals with more typical eating disorders also benefit from tailored treatment and support. 

It sounds like your daughter is struggling at the moment- how does she feel about school? You mention that she eats when at home but that you suspect that she doesn’t have much at school- do you think this could possibly be as school could be a stressful place or because the food there is not right? I’m not saying this is it but stress can also have a massive impact on appetite so this doesn’t necessarily have to be deliberate restriction of food. 

Do you think there could be anything else worrying her or stressing her?

I also don’t know how to best help- it can be a vicious cycle as under-eating also affects mood and low mood affects appetite etc. 

It sounds like you are doing the right thing by being there for her and being supportive without putting too much pressure on her. When seeking help, I would try to ensure if you can that you can see someone who has a good understanding of autism. If you do end up having to engage with eating disorder services, you could if necessary consider sharing some info on links between autism and eating issues eg. https://peacepathway.org . I also believe the NAS has some good resources that could be useful. 

Regarding the exercise routine- it could be a way of trying to burn calories but it could also mainly be a way of relieving stress. When I am feeling overwhelmed, I tend to get more rigid in my routines and having something like an exercise routine to do everyday which is going to be the same no matter what unexpected and unpredictable things happen that day, can be very comforting. However it can also become a source of stress in itself as it can be very stressful when you then can’t do it… I do feel trapped by my routines at times as it makes me very inflexible. It does help to know though that all of these behaviours are there for a reason and tend to perform some sort of function. That doesn’t mean they are necessarily healthy or helpful or harmless in longterm but often they are ways to cope. 

I’m sorry that I can’t be of more help. I hope you find a way forward.