Published on 12, July, 2020
Hi
my 17year old son around 8 weeks ago started reducing calories to 300 per day. He has currently been in hospital for refeeding for the last 5 weeks - this initially was done by tube feeding and more recently he has orally been drinking fortified shakes. He at present is medically fit for discharge but mentally miles away from healthy. He struggles to explain his feelings but says that he is in a constant state of anxiety and has been for many years. The local eating disorder clinic is involved but I feel they do not understand his autism. He has yet to receive any form of counselling/therapy and due to being 18 in a month or so there is an ongoing conflict of who will provide this. Any advice would be greatly appreciated.
thanks
Hi.
I had this problem, I was diagnosed with autism and an eating disorder on the same day whilst in hospital.
I had been hospitalized three times and no one really knew how to help me because I didn't talk about it. I would eat when I was in hospital so the doctors thought I was okay but the problem didn't really get solved. I had to get therapy.
I was also drinking the fortified shakes.
For me it felt like it would never go away that I was always going to be falling into relapse.
Over three years later I no longer have an eating disorder (autism's never going away though ).
What helped me was realizing the pain wasn't worth it anymore, have an eating disorder causes SO much pain, let me tell you and also muscle gaining.
Now for a parent point of view, my mother was not equipped to handle a child, like myself, she would get angry and it only stressed me more and made me not want to eat anymore. Try to get him interested in something else. PLEASE do not show your anger with him, issues with me have started because everyone was screaming in my ear and I felt so isolated and I still haven't told my mum about my eating disorder to this day. I think our relationship is tainted now and I don't know if she can ever gain back that trust.
Also, with anorexia nervosa, what helped me was the idea of getting fit and muscle gaining. This is such a hard time, I am so sorry you both have to go through this.
I know it's hard, but it will be so hard for him, he most likely doesn't want this. Just show him that you are there and ready to get support in any way he expresses it.
I hope this helps.
Good luck to you both.
Thanks for the reply!
I really recommend you looking at the Maudsley resources (link in my first post) – cutting edge in terms of treatment of anorexia in patients with autism.
Hi, I have issues with eating and digestion too, which are most likely autism related, though I do not have anorexia nervosa. I can only recommend my dietitian- She has experience with autistic patients and is one of the most caring and sensitive people I know: home | dalia weinreb (dalianutrition.com). She was the person to realise that I am autistic and thanks to her I am now in the process of diagnosis.
She probably saved my life as I unintentionally ended up very underweight and have had really struggled with mental health. She has been a huge source of support to me, not only in terms of nutrition, but also emotionally and she has encouraged me to seek more support and helped me to find it.
The problem is that the sessions with her are very expensive. I was lucky that my university helped pay for sessions as I was in a bad state and it was taking very long to receive support through the NHS. However if this would be an option for you, I can only recommend her.
Unfortunately I think a lot of professionals do not have much experience with autism but I think it is highly relevant to eating issues: I did quite a lot of reading about this recently, when I became aware of my own autism and there is a lot of literature about the link between eating disorders and autism and how conventional eating disorder treatments are not always best suited to the needs of autistic patients. Love for routines and having things the same, sensory sensitivities, high levels of anxiety etc etc. can be so relevant. If you want I can find some of the references for you? I know that for me my autism is also very relevant to my eating problems.
Have you mentioned your concerns to the treatment team? I really hope your son gets the right support and also some help to deal with the anxiety- I'm sorry that I can't offer more help.
Hello. I was diagnosed and hospitalised with anorexia (and OCD and anxiety) aged just 19 (so hospitalised in an adult acute psychiatric ward – it was 1991 so not many specialist units). I was diagnosed by the South London and Maudsley NHS Trust as autistic just before my 50th birthday at the end of last year. I feel that if it had been known that I was autistic as well, the different professional people trying to help me over the years might have been able to take a different angle that I would have been able to benefit from a bit better. There has been lots of research done into the connection between anorexia and autism and there are some places who are really looking into better ways of addressing anorexia in autistic people. I think the approach outlined here would have helped me: https://www.peacepathway.org/patients There is information here for professionals here too. I hope the people treating your son might look at this. My very best wishes both to your son and to you and all your family.