eating issues

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

  • 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 oOk hand tone3he info that’s here as well, I feel sure I’m going to get some helpful tips. Super exciting Ok hand tone3 Best of luck to you and your boy and the earth suit’s getting more comfortable by the day! Blush

  • Hi BlueRay

    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!

    Guy

  • Hi Ross,  thanks for pointing this out - so much helpful info on the website!

    best regards 

    Guy

  • Just to add, I’ve never had body image problems. I don’t care what shape it is, I wouldn’t of ever thought about that if my sister hadn’t brought body shape to my attention. To me, it’s a body, if it does it’s job, good, if not, fix it. I don’t care how my eyes and nose etc are arranged on my face, it’s a face, we all have one and we’re all beautiful. And this started when I was a little kid, 18 months old in fact, maybe even before, so it’s definitely not a problem with body image for me. It’s the whole thing about putting stuff in my body, like I’m a dustbin or something. I don’t like how food feels in my stomach, it can make my heart race, it can give me anxiety, it can make me angry, or tired, or snappy, it can do so many things to me and I don’t like it.  There’s always the fear of what will happen when it hits the stomach. I don’t seem to get any strong reaction when I eat raw food so although it’s not the most exciting food in the world, it’s simple, quick to prepare, it’s nutritious and doesn’t harm me or send me weird in some way. It’s taken me a long time to work this out. 

  • 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! 

  • 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. 

  • Hi NAS36699,

    There is an information page here on the NAS site about eating problems in people with ASD which you can view here - http://www.autism.org.uk/about/health/eating.aspx. There is information about what the causes may be, strategies for managing difficulties with food, communication tips, and links to further information about coping with eating disorders in a child on the autism spectrum. 

    If you would like to talk to someone directly, please call the NAS Helpline on 0808 800 4104 (open 10am-4pm Mon-Thurs, 9am-3pm Fri).

    Best wishes,

    Ross - mod

  • Hi AngelDust

    thanks for replying - you mirror what the Therapist is telling me, so I will continue to keep the faith.  The trouble is we, as Parents, don't have any access to advice.  We want to prevent the manifestation of the eating disorder taking over his & therefore our lives.  Not least to avoid further mental & physical health issues

    Eating Disorder or ASC??  difficult to say as I have very little understanding of either.  Cause & effect...

    It appears there's a common link between the 2.  Obsessiveness & sensory factors are strong in both,  body image, perception, puberty,  esteem,  anxiety,  having control over something unlike in most other areas of his life.  It's a myriad of stuff, but one which our lack of understanding (Harry's challenge to communication) is at the heart of our mutual anxieties.  It's a mess & we simply don't know what to do to help

    coupled with the fact that ODD/PDA traits make it seemingly impossible to give any reasoned & simple advise.  Whilst he's being given the opportunity to have his 'safe-space', he's increasingly going the other way with his eating/over exercise/toileting obsessions/body dismorphia....  Clearly very challenging for parents to experience,  and go against better judgement to try & help

    Think I'm just repeating myself now,  going round in circles as ever

    Assume that I just need to be making a nuisance of myself with Cahms, to get more eating disorder advice.  Rather than adding to the fuel with Harry by giving attention to the problem,  which he is so very adept at inducing

    Thanks again

    Guy

  • Hi Guy, 

    Do you believe your son has an actual Eating Disorder, such as Anorexia or Bulimia?  If you do, I think that your son should be referred onto the Eating Disorder Pathway, so this could be a direction to pursue, if applicable. However, if you believe your sons relationship with food is more 'grounded' in his ASD, his obsessions or compulsions, then Art Therapy could really be a great help to him with this.   

    In this respect, please don't underestimate the potential worth of Art Therapy. Although I do appreciate that, for those who are (helplessly) witnessing it, rather than experiencing it themselves, it may well often look like a waste of time and load of 'feel good' meaningless rubbish.  But, if it is done well, real 'work' definitely takes place, it can be fantastic, and can enable positive change to occur in 'real life' terms.  

    However, I think that it would be better for everyone if you did feel more involved in your sons treatment. Although attending his sessions would be inappropriate as this is his much needed 1:1 time with his therapist, perhaps you could instead arrange an appointment to meet with his Art Therapist/Psychologist  alone, to discuss how you may help him best at home, reflect on his progress together, and to let them know you are feeling excluded. 

    Best of luck. 

  • Hi Tracy

    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

    Guy

  • Could be an OCD issue. I have this. I want everything to be perfect and can spend up to half an hour in the supermarket just trying to find the perfect tin: the tiniest blemish will put me off. Unfortunately, those nosy neuro-typical types come over to me and ask me why I am spending so long (can't they mind their own business?), and this just makes me more anxious!. Luckily my support worker was with me today when this happened, and she told one nosy lady that I was simply looking at the ingredients, to which the lady replied, 'but there is nothing in these tins, just tomatoes'!.

    OCD can be treated but it takes time and set-backs are to be expected. Support workers, I find, are more helpful than CBT therapists

     

  • Hi Claire

    Sounds like tadie123 has first hand experience and is probably best to guide you on this one.  I just wanted to add that we got a referral to a dietician via our paedatrician and he was excellent.  He did not just give us a diet but he was great at the psychological side of motivating our son to eat the foods we wanted to encourage, advice on supplements in various forms and ways of sneakng them into food and he has a fantastic understanding of ASD.

    Hopefully the one in your area may be similar.  In my totally inexperienced view, I agree with everyone else, let him eat what he wants.

    Good luck, I am sure it will turn out ok with you giving him such great support.

     

     

    Good luck.

  • Hi Tracy

    Thanks so much for your kind response.

    Well we tried the nuts and as you can imagine no chance ! camhs told us not to overfeed him but in my opinion i share teh same view as you both that eating something is better than nothing.

    We do have issues with texture, look and feel already, it was the weight loss and being sick that wa a worry. Camhs just seemed to think we could give him nuts and seeds and mackerel and it would fix him !!

    I not sure what has triggered it whether it be stress or control but we have noticed his repetitive handwashing has reappeared recently. We are all quite close as a family and i cannot pinpoint anything. Excercising is normal for his age and the only sport he plays is snoooker!

    We were told that it too early to say anorexia so we got to see if we can get any weight back on him if not go back, i must say the gp seemed more concerned than camhs.

    Thanks so much with all my heart for your advice and i am going to set about accessing help and contacting the places you have suggested.

    Thanks again Claire xx

  • Hi Claire,

    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.

    Tracy x

     

  • Thanks so much for your reply.

    I will have a read of the info sheet ASAP.

    Well they said to see if he gains weight and if not to take him back   !

    Think i iwll be back in touch with them.

    Thanks again Claire

  • Hi Claire 

    I am sorry that you are having problems at the moment.  I have posted a link below for an advice sheet that might be able to help you.

    http://www.autism.org.uk/Living-with-autism/Understanding-behaviour/Dietary-management-for-children-and-adolescents/Dietary-management-restricted-diet.aspx

    I wonder if your son makes himself sick after he has eaten a certain kind of food or whether it is more random than that.  If he has a favourite food that you don't let him have very often because of it is not very good for him, then I would let him have that just to get something inside of him.  If he loves pizza, then let him eat it as much as possible because at least he will be getting something that he can keep down.

    I would also go back to CAMHS.  My experience is that they will never do anything unless you create a fuss.  Their advice about nuts, seeds and fish is, quite frankly, pointless and they need to think again.  

    I hope this helps

    Good luck

    ColinCat