I have a a 12 year old son who has autism and has been diagnosed since he was 6.
He has always been fussy with his food, but just recently we caught him making himself sick on an number of occasions and we know of other times he has been sick many other occasion but we dont know if he has done that himself. He is also very underweight and all his bones are visible through his skin.
We had him back to camhs where we have been told it too early to diagnose anorexia . Also they said to give him vegetable fats in abundance such as nuts seeds and fish !! not gonna happen !
Just after some advice really or similar experiences
Thanks claire x
Lovely to meet you. Sorry to hear that you are having problems with your son's eating. We have had similar difficulties ourselves when our son was 15 and this was before we realised that he had Aspergers. We had a very difficult 2 years with him until we learnt about his particular way of thinking and had to adapt accordingly.
The most important thing here is to try to stay calm. The word "Anorexia" can conjure up so many fears and distress for parents but the key is to try to limit your son's anxiety. I agree with ColinCat let him have whatever foods he likes particularly if they are high in calorie. Maybe you can find ways to add extra oil or fat to the foods he likes in order to introduce more calories.
In my opinion it is important try to work out what might be causing the problem, if at all possible. Is it texture, smell or even colour of certain foods. Could he be obsessed with 'healthy' eating and/or exercise as our son is? A friend of ours used to make himself sick because he wanted to become vegetarian and couldn't bear to eat meat. If he has a special interest at the moment could this be the clue to it?
Professor Janet Treasure is a Psychiatrist who has done some research about the link between disordered eating and Autism/Aspergers. I believe she is based at the South London and Maudsley NHS Hospitals. It might be worth trying to contact her team to ask for some advice.
Hopefully you will soon find out the reason why he feels he has to do this and things will get back on track. The NAS helpline was of great support to us and you could also try the eating disorder support organisation called BEAT www.b-eat.co.uk/.../ for some information and support.
It may also be worth enlisting the help of a nutritionist to work out a diet that he is happy with that would allow him to gain a healthier weight. Please also keep going back to your doctors for some help as boys of your son's age need a lot of calories and can see a rapid weight loss especially if they are keen on sport. If you feel fobbed off by them, the NICE (National Institute for Health and Clinical Excellence) guidelines do tell the medical profession what you have a right to expect from them. You should be able to find these on the internet.
Good luck, I'm here for you whenever you feel in need of someone to offload to.
Having just trawled the NAS site, your reply seems most relevant to our son (13yo) who is rapidly descending down an eating disorder route. ASD/ADhD,with long felt traits of ODD or PDA. Battled to get help at CAHMS, rejected by LDcahms re higher than threshold IQ, just started seeing an 'Art Therapy Phycologist' but we aren't getting any advice as parents about how to deal with Harry's obsessiveness with eating, over exercise & toileting fascinations.... In fact not confident we're getting the right support for H, reckon he just enjoys 'his focus time' with child centered Cahms because it gets him time off school... I'm a persistent parent, just need to know which direction i should be putting most of my energies into? Hoping you are still active on this NAS forum.... or anyone else with ASC & Eating Disorder link. It's taking over my son's already heavily burdened life, and considerable effects upon the rest of life/family etc...all the usual stuff for a super parent of super ASC children
Help much apprecauted
Hi Guy, I don’t think I’m going to be much help here, it’s just my experience of food and eating. I’m 50 years old with autism and have had difficulties with eating all my life. I’m ok if I follow a strict program and I get into a habit. What I find interesting is that today, I’m feeling so happy and I HATE food. I want nothing to do with any of it. It’s like it drags my life down. When I get on a role, I can eat it and even really enjoy it but when I’m feeling so good, like today, the thought of eating or even drinking is such a big distraction that I don’t want anything to do with it. It’s like it has nothing to do with me, why would I want to eat it? It drags my soul down and makes me feel sick and sometimes I do vomit. I would regularly vomit as a child after eating if they managed to get any food down me. I was vomiting a couple of days ago. I think that because I don’t identify with my body, in the way most people do, I don’t have that natural connection towards food. I’m a nutritionist and Ayurvedic practitioner so I know all about food and healthy eating etc but when it comes to me and food, we don’t get along.
I’m going to ease myself into eating a mostly raw food diet. I don’t over eat on raw food and it doesn’t make my stomach feel heavy or sap my energy. It doesn’t mess with my emotions etc and after 50 years of trying different ways of eating etc, I think that this may be my answer. I feel much better on a wholefood plant based diet but I think I need to take it to the next stage. I don’t particularly want to but I know I’ve got to sort this damn eating issue out and this seems like a solution that could work, at least one that’s worth trying.
p.s. I’ve also had a life long obsession with exercise and a fascination with toileting needs. I was first taken to the doctors when I was just a little kid, with my eating problems. The doctor simply said I didn’t chew my food so needed to chew it. I thought, of course I’m not chewing my food, I don’t want any of that stuff in my mouth so I’m not going to chew it. I have always eaten things of a certain colour, shape, smell, texture etc but this was more about trying to do damage limitation, to have as much control as possible over this stuff (food) that has to go in my mouth. After 50 years, despite people telling me I have an eating disorder (I have never in my life considered this) I have finally realised, that it certainly ‘looks’ like an eating disorder. That shocked me. The realisation came only a few days ago when I was yet again, throwing up after eating a really nice dinner. I would never go down the eating disorder route. I will not have my eating habits pathologised, but now I’ve got a greater awareness of it, I can deal with it.
For me, the top and bottom of it is that I don’t identify with my body as if it was a part of me, beyond let’s say, an earth suit, that I wear while I’m here on planet earth. ‘I’ don’t need food but I understand and accept that my body might, so I’m willing to try. I’ll try a raw food diet and if just doesn’t work, I think I’ll become a breatharian! Lol! They don’t eat (or drink I don’t think). There was one in Bali the year before last when I was there but I never got to meet her.
Excercise and monitoring my bowel habits etc are good for me, the exercise keeps my mind fit and I can tell from my bowel habits how healthy my diet is and if I need to make adjustments. I was once told by a super excited consultant that I had the cleanest bowels he had ever seen, and he’s seen quite a few over the years, he was over the moon by it! Lol! So at least I know I’ve got clean bowels! lol!
thanks for taking the time to reply, especially in such great detail. As our son doesn't tell us much about things, this is very helpful to have a little insight into some of the possible processes going on in his wonderful mind.
All the very best to you & your Earth suit!
And thanks to you for bringing this up. I’m going to check out the links that Ross gave ~ I would love to be free from this eating disorder. I’m going to try raw food only but I’m going to check ohe info that’s here as well, I feel sure I’m going to get some helpful tips. Super exciting Best of luck to you and your boy and the earth suit’s getting more comfortable by the day!