Help! 12 year old son not eating

Hi, This is difficult. I am autistic as well and I have a lot of issues around food, eating and digestion (ARFID issues mainly, periods of eating only handful of foods in set pattern/routine, more of a tendency of restriction and often end up very underweight, but have had issues with binging too)- so I am not sure if I am the best to advise given that I am nowhere near sorting out my own eating issues, but I thought I would just share my thoughts and what I learnt so far. 

It sounds like he is somehow overwhelmed or struggling- that often makes issues around eating worse (and it sounds like from what you have said that he previously also was somewhat selective in his eating? and that he might have always had more of a tendency to undereat?). Stress/anxiety can huge impact on appetite and also digestion at least for me. And there can be more of a need for something to be predictable in life when other aspects of life are stressful- and that one predictable thing might be food (from personal experience I get much more stuck in keeping things exactly same, sticking to my routine, safe foods etc. when I am stressed or other parts of my life are unpredictable). Just because he is doing well academically, doesn't necessarily mean that it isn't school that is the stressor.... But I think you already know all this- it sounds like you and your family have a lot of experience and understanding already. I also don't know how you can best find out what could be troubling him. 

In terms of getting help, in general I think the advice is that it is very important to get help early for eating issues- GPs etc can be reluctant to refer though. However on the other hand I have to say that the eating disorder services that I have dealt with have had very little understanding or experience with autism related eating issues (such as ARFID), they are much more geared up to deal with anorexia nervosa, bulimia or binge eating. I didn't have the best experience in the past, but I think it's really a matter of which professional you fall on and how good the service in your area is and maybe services have become better at understanding autistic individuals since. I would probably push for a referral to an eating disorder service- the waiting times are long (especially if weight is not extremely low- I know it is sad and not right, but they use people's weight to determine how quickly they are seen... at least in my area...) so I think it is best to get the referral going and to seek out more support- if it's not needed by the time the appointment comes through, great, but if you do end up needing more help, you don't want to end up in a situation where he only gets referred when his health has further deteriorated and you then still need to wait.

In terms of advice on eating issues I highly recommend ringing Beat. I think they also provide advice for children. I have rung them more than once and they are amazing. They will be able to advise you, sign post you to resources, they can send you a leaflet to take to GP to help with getting necessary referrals and they can even advocate on your behalf if necessary. The UK's Eating Disorder Charity - Beat (beateatingdisorders.org.uk) - I think they will be able to give good advice. 

If you wanted to get advice from a dietitian privately, I have a very good one- I'm not sure she works with children but she is lovely and very experienced so she might also be able to advise and/or suggest someone else who does work with children. She has a lot of experience of working with autistic individuals (she is actually the one that realised I was probably autistic which resulted in me asking for a referral for diagnosis). She has been a huge source of support for me over the past years- her advice is highly individualised and she has helped a lot with my mental health in general. The main issue is that it is very expensive. home | dalia weinreb (dalianutrition.com)

In terms of practical advise how to handle the not eating much situation, it's really hard to say. Out of curiosity, what foods does he still eat? Is there a common feature about these foods? eg. texture, colour etc? Does the environment he is in when eating have an impact on how it goes? (eg. how is his eating at school vs at home? or at home, is it better/worse if more people are there etc.?) I'm thinking, it might be a good idea to keep a food diary for a bit- write down time and what he eats and possibly also where he ate it/ who was there, what was going on etc. and any other relevant thing that happened that day. Maybe that can give you some insight into triggers/ patterns and it will also be useful to have a food diary to show to any professionals. 

These are the main things I can think of for now... hopefully you can figure out what underlying factors might be making his eating worse and hopefully you can remove or mitigate some of those factors... 

I'm sorry I can't be of more help. I hope you get the help you need for your son! 

Hi, This is difficult. I am autistic as well and I have a lot of issues around food, eating and digestion (ARFID issues mainly, periods of eating only handful of foods in set pattern/routine, more of a tendency of restriction and often end up very underweight, but have had issues with binging too)- so I am not sure if I am the best to advise given that I am nowhere near sorting out my own eating issues, but I thought I would just share my thoughts and what I learnt so far. 

It sounds like he is somehow overwhelmed or struggling- that often makes issues around eating worse (and it sounds like from what you have said that he previously also was somewhat selective in his eating? and that he might have always had more of a tendency to undereat?). Stress/anxiety can huge impact on appetite and also digestion at least for me. And there can be more of a need for something to be predictable in life when other aspects of life are stressful- and that one predictable thing might be food (from personal experience I get much more stuck in keeping things exactly same, sticking to my routine, safe foods etc. when I am stressed or other parts of my life are unpredictable). Just because he is doing well academically, doesn't necessarily mean that it isn't school that is the stressor.... But I think you already know all this- it sounds like you and your family have a lot of experience and understanding already. I also don't know how you can best find out what could be troubling him. 

In terms of getting help, in general I think the advice is that it is very important to get help early for eating issues- GPs etc can be reluctant to refer though. However on the other hand I have to say that the eating disorder services that I have dealt with have had very little understanding or experience with autism related eating issues (such as ARFID), they are much more geared up to deal with anorexia nervosa, bulimia or binge eating. I didn't have the best experience in the past, but I think it's really a matter of which professional you fall on and how good the service in your area is and maybe services have become better at understanding autistic individuals since. I would probably push for a referral to an eating disorder service- the waiting times are long (especially if weight is not extremely low- I know it is sad and not right, but they use people's weight to determine how quickly they are seen... at least in my area...) so I think it is best to get the referral going and to seek out more support- if it's not needed by the time the appointment comes through, great, but if you do end up needing more help, you don't want to end up in a situation where he only gets referred when his health has further deteriorated and you then still need to wait.

In terms of advice on eating issues I highly recommend ringing Beat. I think they also provide advice for children. I have rung them more than once and they are amazing. They will be able to advise you, sign post you to resources, they can send you a leaflet to take to GP to help with getting necessary referrals and they can even advocate on your behalf if necessary. The UK's Eating Disorder Charity - Beat (beateatingdisorders.org.uk) - I think they will be able to give good advice. 

If you wanted to get advice from a dietitian privately, I have a very good one- I'm not sure she works with children but she is lovely and very experienced so she might also be able to advise and/or suggest someone else who does work with children. She has a lot of experience of working with autistic individuals (she is actually the one that realised I was probably autistic which resulted in me asking for a referral for diagnosis). She has been a huge source of support for me over the past years- her advice is highly individualised and she has helped a lot with my mental health in general. The main issue is that it is very expensive. home | dalia weinreb (dalianutrition.com)

In terms of practical advise how to handle the not eating much situation, it's really hard to say. Out of curiosity, what foods does he still eat? Is there a common feature about these foods? eg. texture, colour etc? Does the environment he is in when eating have an impact on how it goes? (eg. how is his eating at school vs at home? or at home, is it better/worse if more people are there etc.?) I'm thinking, it might be a good idea to keep a food diary for a bit- write down time and what he eats and possibly also where he ate it/ who was there, what was going on etc. and any other relevant thing that happened that day. Maybe that can give you some insight into triggers/ patterns and it will also be useful to have a food diary to show to any professionals. 

These are the main things I can think of for now... hopefully you can figure out what underlying factors might be making his eating worse and hopefully you can remove or mitigate some of those factors... 

I'm sorry I can't be of more help. I hope you get the help you need for your son!